I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: kristina on November 28, 2014, 03:32:04 AM
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Hello,
I have just been told that my pre-dialysis-days are coming to an end...
My 43 years of struggling to keep my kidney function going for another day are finally ending...
... and I have to start the dreaded dialysis very urgently ...
As a "chronic optimist" I was very much hoping - until the very last minute - that my "two little fighters" might recover a little again
as they did in 1971, but it looks very unlikely now ... and I am finally "in for it"...
I just have been told that I have become an emergency now and perhaps I have been trying so very hard for much too long...
... right now I am waiting for the telephone to ring, because my Creatinine and Urea blood-test-results have suddenly become life-dangerously high,
and I have sadly become an emergency to be put on dialysis as soon as possible...
Kristina.
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Wishing you all the best Kristina. I wish your little fighters could have held out longer but what a good fight they have put up. Let us know how you're doing.
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The very best of luck!...
Darth...
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Oh Kristina, I am so sorry to hear this. I know how hard you have been trying for all of these years to avoid dialysis, and you have done a remarkable job! You are to be congratulated. I can't think of anything more that you could have done.
You will be OK. Since your wonderful husband has offered to become part of a chain, transplant is in your future, so now your task is to remain as healthy as possible so that you can be transplanted as quickly as possible. Dialysis is just one more step you have to take to stay healthy until a kidney is available.
Please let us hear from you to let us know what your doctors have in mind for you. You are in my thoughts.
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You are very self-educated on everything about dialysis. You will do fine.
Keep us posted.
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This is always a very difficult transition time but as others have said you are well informed and will continue to be an educated patient. Thinking of you and wishing you the best.
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Oh dear Kris I'm really sorry that you have to start now, but like all said above: girl what a fight!
You'll be fine, with all your knowledge, and after adjusting to D, and with the outlook on a transplant.
Lots of luck, and love, and 'feeling better' -vibes, Cas
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Kristina, I am so sorry to hear this news. You have done so well for so long, I was beginning to think you would never go on D, but here it is. I think once they ( the two little fighters) know they need to give up, it is done remarkably fast. You are not going to have any problems, I am sure, and before you know it, you transplant time will be here. Stay calm and take lots of deep breaths and I just know you will be fine. We are all here to listen to you and how it is going for you and will be anxiously awaiting any news. Take care. Best Wishes.
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:cuddle; :cuddle; :cuddle; You gave it your all! I am sure you'll tackle dialysis head-on and do well. Sending you BIG HUGS!
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Wish you all the best. You have put up a great battle . You have not lost the war , you're just going to fight it another way so don't give up. :grouphug;
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I know you never wanted to go on dialysis, and you and you an your two little fighters fought long and hard to prevent this day. You always take charge of any situation you find yourself in, and I think dialysis will be no different. Same war, new battle. I have no doubt you will triumph again! Keeping you in my thoughts as you beginthis new adventure.
:boxing; :boxing; :boxing;
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I am sure you will do just fine, Kristina. Fear of the unknown is usually worse than the reality.
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I'm sorry. Your life is a success story and I know it'll continue to be a success story through this bump in your road. You already know how to handle the worst challenges and come out on top.
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Kristina, welcome to the club. We have been waiting for you for a long time! You'll be right ( a great Australian expression )! One day at a time is the way and you keep on top of things and, with your intelligence and enquiring nature, I'm sure you will. I've been on HD for over 5 years now and, despite all that's wrong with me, I feel damned well!. Very best wishes on your new adventure!
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Kristina - is IS possible to have a great life when on dialysis. I thought dialysis would destroy my life, but it hasn't worked out that way. The biggest sacrifice has been switching from 40 hours/week to 30 at work because of all the time on the machine.
If you are the personality type that can handle it, home dialysis (PD or hemo) can make it suck a whole lot less.
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Welcome to dialysis. What a thing to get welcomed to! Good luck as you begin a new way of life. It will take time to develop a new way of living with dialysis. Tackle it head on.
You know a lot already, Make wise choices for you.
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Thank you all for your very kind and understanding replies!
It has touched me very much and your kind understanding has helped me a lot to handle the shock much better!
This Friday - or the coming Monday - I shall get my (chest) access "installed"
and I shall have to start with dialysis the very same day (...I have certainly left it to the very last minute...) .
In a way I am sad about this development, but I am also very happy that my body could last so long
and I shall try my very best to approach this new adventure with positive thoughts...
Thank you all again from Kristina. :grouphug;
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Thank you all for your very kind and understanding replies!
It has touched me very much and your kind understanding has helped me a lot to handle the shock much better!
This Friday - or the coming Monday - I shall get my (chest) access "installed"
and I shall have to start with dialysis the very same day (...I have certainly left it to the very last minute...) .
In a way I am sad about this development, but I am also very happy that my body could last so long
and I shall try my very best to approach this new adventure with positive thoughts...
Thank you all again from Kristina. :grouphug;
I think you will be pleasantly surprised at how much better you will feel on dialysis . Ny wife perked up the first treatment she ever had . Then you can focus next on home dialysis as that will even feel better. ASk any questions you have . We have all been there where you are.
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Best of luck. Continue to keep positive as you were in the past when you described how you delayed dialysis. If you can keep positive I think you will find dialysis quite manageable.
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Thank you all for your very kind and understanding replies!
It has touched me very much and your kind understanding has helped me a lot to handle the shock much better!
This Friday - or the coming Monday - I shall get my (chest) access "installed"
and I shall have to start with dialysis the very same day (...I have certainly left it to the very last minute...) .
In a way I am sad about this development, but I am also very happy that my body could last so long
and I shall try my very best to approach this new adventure with positive thoughts...
Thank you all again from Kristina. :grouphug;
Strange as it may seem now, you will find that there will be less stress in your life.
Flow with the 'I shall try my very best to approach this new adventure with positive thoughts...', it will be a helpful companion.
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Thanks again for all your kind wishes and kind thoughts, it is very much appreciated!
... Over the past few days I had "a little talk with myself" and it made me realize, that without dialysis
my life would definitely come to an abrupt end within the next few weeks ... or days...
... but with the help of dialysis I shall be able to continue my life and - with a bit of luck - I might be even able to continue with my work and career
and that would be absolutely magnificent ! Welcoming dialysis might give me also a chance to "be around"
whilst all the medical research into better kidney treatments carries on ... and who knows what might be discovered...?
... All in all, I shall welcome the opportunity to continue my life with the help of dialysis and hopefully
being on dialysis might "start a new chapter" in my life and this new chapter might "only" involve a few new routines...
Thanks again from Kristina.
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Kristina,
you are a trouper. Look at how long you have managed to keep yourself going without dialysis. As others have said, you may be pleasantly surprised at how much better you feel. Carl often said that he felt 10 years younger as soon as he started dialysis!
Keep your spirits up. That is more than half the battle!
:grouphug;
Aleta
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Kristina, you will feel better once you start dialysis. Hubby went 10 years pre dialysis and was pretty sick before he started. That was almost 18 years ago and he is still going strong. He cuts his own firewood and does everything that he wants to do. One of the main things he says has helped him is accepting dialysis as part of his life. He says the main thing is to look after yourself and watch your fluids!!
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Thanks again for your kind wishes.
I shall make a point to prepare myself mentally for dialysis
and hopefully my whole body agrees with the new treatment as well
... and hopefully my body will also agree with the new medication
without getting into an allergic reaction because of drug-intolerance...
I shall do my very best to "embrace dialysis" and I shall also do my very best to carry on living
and hopefully I might be having enough energy once again to go back to my work and career.
Best wishes and thanks again from Kristina.
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Thanks again for your kind wishes.
I shall make a point to prepare myself mentally for dialysis
and hopefully my whole body agrees with the new treatment as well
... and hopefully my body will also agree with the new medication
without getting into an allergic reaction because of drug-intolerance...
I shall do my very best to "embrace dialysis" and I shall also do my very best to carry on living
and hopefully I might be having enough energy once again to go back to my work and career.
Best wishes and thanks again from Kristina.
Kristina, you are an important member here. I want to offer all i can to help you through the beginning of dialysis. Please ask any questions you have and lean on those of us who are already there. We can help you get through this.
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Thank you obsidianom for your very kind humanitarian thoughts.
It is so good for me to know that I can come here with any questions I may have
and it is so sweet of you to offer your kind assistance.
Thanks again from Kristina.
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I thoroughly support obsidianom, kristina. I've got over 5 years up and am happy to add my two-bobs worth where necessary!
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kristina,
Hope your journey into dialysis will make you feel well and strong! Already you sound emotionally strong, hopefully dialysis will make you feel physically stronger, too!
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Thanks again galvo and PrimeTimer for your very kind emotional support.
It is very much appreciated and it is so good for me to know where to come with my questions...
Thanks again from Kristina.
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Kristina you are very important to all of us here.
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Thank you obsidianom for your kind reassurance...
... I wish I could be a little less nervous about the event...
Best wishes and thanks again from Kristina.
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... In a strange sort of way my life would come to an end right now,
but with the help of modern medicine, determined medics and regular dialysis
and the genius of the inventor of dialysis, Willem Johan Kolff,
I am given another chance to continue with my life and perhaps even with my career ...
(if I continue to take great care of myself and keep an eye on my strict vegetarian very healthy diet...)
... a very strange and a very eerie thought..
...and it makes me feel very humble indeed... :grouphug;
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I know that feeling, Kristina. I have had nearly 26 years on bonus days because of dialysis and transplantation. Made me take on challenges that I probably wouldn't have done otherwise and an appreciation of life that I don't think healthy people probably don't understand.
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Thank you Amanda,
I shall do my utmost best to achieve many bonus days & bonus years as well.
Thanks again from Kristina.
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... and thank you JW77 for arranging this telephone call !
It was like medicine to actually talk so someone who has been there and seen it and it was extremely helpful!
Thanks again from Kristina.
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Thank you all very much for your good wishes and for kindly keeping your fingers crossed .
I had my cath "put in" my chest today and everything went extremely well and I am very pleased.
It still feels a little sore, but that is all and I am now mainly recovering from the mental strain of anticipation...
... and I shall be able to start dialysis within the next few days.
Thank you all very much again; it is so good to be able to come here and exchange our experiences...
Best wishes and thanks again from Kristina.
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Was it true for you, that the anticipation was worse than the experience itself?
I am so glad the cath insertion went well. I am greatly relieved. Thanks so much for telling us, and please do keep us updated once dialysis starts. I have great hopes for your future!
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Hello MooseMum,
Yes, it is true, the anticipation was much worse than the actual event.
I also feel very lucky that I came across a most professional and very kind-minded nephrologist
who specializes in these chest-op's and he involved me at the same time in a most interesting literary discussion.
I hardly noticed anything of the operation itself and our interesting talk made me concentrate on what we were discussing...
... I feel very lucky because I was at the right time at the right place and came across a most professional medical team...
... and I very much hope that my good luck continues a little longer and I come across a good dialysis centre as well...
... and hopefully there won't be any drug-intolerances or allergies or problems with "my" photosensitivity
...and hopefully my body is going to be able to take dialysis...
Thanks again from Kristina.
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Hello MooseMum,
Yes, it is true, the anticipation was much worse than the actual event.
I also feel very lucky that I came across a most professional and very kind-minded nephrologist
who specializes in these chest-op's and he involved me at the same time in a most interesting literary discussion.
I hardly noticed anything of the operation itself and our interesting talk made me concentrate on what we were discussing...
... I feel very lucky because I was at the right time at the right place and came across a most professional medical team...
... and I very much hope that my good luck continues a little longer and I come across a good dialysis centre as well...
... and hopefully there won't be any drug-intolerances or allergies or problems with "my" photosensitivity
...and hopefully my body is going to be able to take dialysis...
Thanks again from Kristina.
Kristina, if you do have any problems with dilaysis, bring them here to us. I can help you figure things out. The good news is that there arent really any medications involved. Its just a matter of the speed and fluid removal . Do you still urinate ? That makes a huge differance.
We are here for you.
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Kristina, I am so pleased that you are happy with your medical team. You know what difference that makes!!
Any news on the transplant front?
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Thank you for your kind concerns, obsidianom and MooseMum
I don't know any news about my transplant yet, because my body has to get much stronger first
and my understanding is that this is going to happen through my oncoming sessions of dialysis...
... fortunately I don't have any direct ESRF-problems showing "loudly" yet, things and my body-functions are "still in place"...
... The only symptoms of ESRF showing is the (very bad) water-retention in my feet... and I have swollen eye-lids ...
... and I am extremely exhausted and feel really dead-tired at all times...
Thanks again from Kristina
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Kristina, my computer was in the garage and I had no idea you were " that" close. But, even without me, you did well, just as we all knew you would. You are one great role model and I am so glad things went well for you. :cuddle;
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Kristina, I'm hapy to hear your catheter placement went well, and that you are so happy with your medical team. Hoping dialysis removes the extra fluid and relieves the swelling in your feet and eyelids, and improves your strength and energy level quickly.
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Okay... today is the BIG day. You will be fine. Take a blanket or two. Wear a shirt that buttons down the front so they can get to your chest catheter. Take a small water and a snack if they let you eat at your center. Only ask a few questions a day! At least with a catheter you don't have to deal with needles at first.
You got this!
:yahoo;
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Hello again and thanks again for your kind thoughts.
Today I had my very first 70 minutes of dialysis and I am pleasantly surprised.
The nurses were very kind and they looked after me, explained everything and brought me coffee, biscuits and sandwiches .
I do hope my good luck continues...
...Strangely enough, my life would come to an end right now, but with the help of dialysis it can continue...
... and I am very grateful to be given this chance...
During the dialysis I did a few crosswords and noticed that dialysis is a very new routine I need to get used to.
Rerun, many thanks for remembering that it was my BIG day today !
It went surprisingly well and I thank you again for your kind thoughts.
Kind regards and best wishes from Kristina. :grouphug;
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Now THAT'S great to hear! Thanx for the update.
Love, Cas
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Dear Kristina,
Just know you are not alone on your new journey with hemodialysis.
We will be here to help you along.
Love and luck,
--Zach
8)
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Thank you very much again.
It is quite a new journey and today I feel very exhausted and relieved
from my initial fear and anticipation...
Thanks again from Kristina. :grouphug;
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So glad it went well. There will be a few ups and downs, but nothing you won't be able to handle. Kind thoughts to you.
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Thank you galvo for your kind thoughts.
My ups and downs have already started and I am on a bumpy road right now,
but I feel very lucky that I can share my experiences and continue to ask my questions here.
That makes a difficult situation so much easier to get sorted ...
It is very much appreciated and thanks again from Kristina.
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:grouphug; Hope all continues to go well.
Jenna started emergency dialysis 2 days before Christmas 2004.
I am glad you were prepared, much better that way.
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Thank you okarol, for your kind thought, it is very much appreciated.
I do hope Jenna is doing well, is in good health
and I am very sorry that she had to start with dialysis in 2004 two days before Christmas...
... It made me feel very strange when I was "entwined with the machine" in the dialysis-centre before Christmas ...
... Thankfully I was already mentally prepared for dialysis when I started with it, but strangely enough,
the actual experience was very different again and I am still trying to find my way into the new routine,
and also try very hard to make it a success and I feel very grateful that I am still alive
because without the invention of dialysis I would not be alive anymore right now ...
and that is a very strange feeling... almost a little bit eerie...
... I have also noticed, that in order to avoid too many mishaps with dialysis,
I better stick vigilantly to my healthy vegetarian diet ... and also better stick to the limited liquid-intake....
... it is hard and unfortunately there is no other way...
Thanks again and best wishes from Kristina.
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Hello again,
Having used one of the dialysis-machines in “my” dialysis-centre for 16 times during the last 4 weeks and 5 days,
I have noticed that the transition from pre-dialysis to dialysis has happened
without any noticeable "hiccups" or "upsets" within my body ... (touch wood)...
...and I feel extremely relieved and very grateful about this ...
...The transition from being pre-dialysis to my starting with dialysis was perhaps not overly hard or abrupt to my body,
because I did continue to eat exactly the same vegetarian diet as I did in all those years whilst being pre-dialysis ...
... Perhaps my body has remained so calm during all this upheaval and great transition,
because there was no change whatsoever with my diet ... ?
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Sounds very poss Kristina. I hope you'll keep feeling well till your transplant honey
:cheer:
Love, Cas
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Thank you for your kind thoughts, Cassandra,
I do appreciate it very much.
Best wishes and thanks again from Kristina.
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... I have asked the medical team and the dietician how I should continue with my vegetarian diet since starting dialysis,
because supposedly I need so much more protein whilst on dialysis... They all had a look at my monthly-blood-test-results
and told me that I should certainly "continue with what I am doing" because all my blood-test-results are fine
and there is nothing at all that needs a change in my vegetarian diet ...
Because of that I shall continue with the same vegetarian diet as I did before in my pre-dialysis-years ...
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kristina, that is great news! Paying attention to your lab results each month will tell you if/when your diet needs some tweaking. It will also tell you if you have room to spare and can indulge in something you normally wouldn't...hee, hee. It's good that you don't have to change anything right now. Good luck, keep well!
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Hey Kristina - I am almost there myself GFR dropped to 13.5 from 18 a month ago. I'm a little scared about those huge needles. I plan on in-center hemo to begin with. We have a lot of people pulling for us here. Group hug is needed :grouphug; and welcome.
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Hello Gracie,
... It depends how you feel with your GFR in the near future and I am sure you know when your body needs dialysis...
... I have a "tunneled chest-catheter" and I get "my" dialysis through the catheter and don't "need" any needles,
which is very important for me because I am not quite a "needlephobic", but I am not that far off from it either...
... It is true that we have lot of people pulling us here and there is always lots of support to be found here...
I do wish you good luck and all the best,
Kristina.
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Take a small water and a snack if they let you eat at your center
Take it even if they don't. Often the rules "as applied" differ significantly from those "as posted" (or in the literature)
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Take a small water and a snack if they let you eat at your center
Take it even if they don't. Often the rules "as applied" differ significantly from those "as posted" (or in the literature)
... I always take a sandwich with me and eating this sandwich at the very beginning of each session,
seems to "ease my body" into the procedure...
... after about two hours of each dialysis-session a lady comes along with a tray of sandwiches and I always chose one ...
... she also offers coffee or tea and a biscuit... and all that helps a lot to make each session a little bit easier to take ...
... and it also puts a human touch into it ...
Thanks again from Kristina. :grouphug;
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... My husband kindly offered to donate one of his kidneys in an exchange,
so that I could have a kidney-transplant and we both went through all the necessary medical examinations...
... I was very lucky and "sailed through" every medical examination without any medical problem being noticed or found
and unfortunately my husband was diagnosed with cancer...
... But we were very lucky, because the cancer was "spotted" in its very early stage
and my husband "only" needed a quick operation and no other treatment was necessary for him ...
... After his very successful operation we were being told that we now have to "wait and see" for about two years
to have another chance and try again...
P.S. We still can't believe that without my husband's kidney-donation-work-up
this cancer would not have been noticed or diagnosed, because there were no symptoms at all ...
... and we still can't believe how quickly it was medically sorted out ...
... It feels now like a nightmare which disappeared as quickly as it came about ...
Kristina.
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... My husband kindly offered to donate one of his kidneys in an exchange,
so that I could have a kidney-transplant and we both went through all the necessary medical examinations...
... I was very lucky and "sailed through" every medical examination without any medical problem being noticed or found
and unfortunately my husband was diagnosed with cancer...
... But we were very lucky, because the cancer was "spotted" in its very early stage
and my husband "only" needed a quick operation and no other treatment was necessary for him ...
... After his very successful operation we were being told that we now have to "wait and see" for about two years
to have another chance and try again...
P.S. We still can't believe that without my husband's kidney-donation-work-up
this cancer would not have been noticed or diagnosed, because there were no symptoms at all ...
... and we still can't believe how quickly it was medically sorted out ...
... It feels now like a nightmare which disappeared as quickly as it came about ...
Kristina.
Kristina, I am truly sorry to hear this. But at the same time so glad that your husband's cancer was found at such an early stage. Most cancer evades detection until there are some symptoms, and even when there are some symptoms, a lot of people ignore them. Your husband sure was lucky and you were the reason for this luck.
Best of luck to you both :grouphug;
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Kristina, two years must seem like a long time, especially since we were all thinking that you'd be transplanted possibly this summer. So, I'm sorry to hear this news, but I'm sure your husband will be checked frequently. Perhaps his doctor will give his consent for your husband to donate in less than two years if all of his reports come back clean. We will all be hoping for the best.
In the meantime, you have always taken good care of yourself, so I am very confident that you will cope well with dialysis just as you've coped well for so long during your years of pre-dialysis. Are you still on the transplant list in the UK? Would you be willing to have a cadaveric donor? If so, is it possible that you won't have to wait for 2 years for a new kidney?
:cuddle;
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Dear Kristina, I'm sorry to read your news, and agree with Athena about your husband's 'luck' with the early detection.
Best of luck, and health to the both of you of course, and I would think you are on the waiting list anyway, so you never know, those 2 years might be much shorter.
Lots of love, luck and strength to you both, Cas
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Many thanks for your kind support Athena, MooseMom and cassandra,
it is very much appreciated because at the moment I feel a bit "down in the dumps" about the attitude of some nurses at "my" dialysis-centre...
Unfortunately, not many nurses/medics appreciate my suffering from severe photosensitivity due to "my" SLE/Lupus/MCTD
and that is the reason why I find myself again and again explaining again and again my severe symptoms etc. of photosensitivity
(even though it is already medically gone into and clearly medically explained in my medical file ...)
... This situation makes me feel sometimes like a hopeless parrot who has to repeat (and explain) the same story over and over again
and it really brings me down, because by being forced to explain over and over again my situation, it really "rubs in" my terrible medical condition ...
The problem is unfortunately, that in my case it can become seriously life-dangerous, if I am exposed to artificial ultraviolet lighting for too long,
because that causes an SLE/MCTD-flare-up and raises my BP to such an extend, that in the past it has caused me to suffer
from cerebral haemorrhages, a severe CVA-stroke and some other life-threatening medical complaints ...
It should then go without saying that such a severe condition explains itself without much to add, but unfortunately that is not so...
Yesterday I was forced to put on my "parrot-suit" again to defend my position again and again
and fortunately I finally could stand my ground two hours later ...
... The question is now, what might happen the next time at the dialysis-centre and what is going on in the first place
when all about my medical condition has already been fully explained in my medical file anyway ...?
Thanks again from Kristina. :grouphug;
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Oh Kristina, I sure do know how it feels like to have to adopt the position of being a parrot. When I was one week in hospital earlier this year (which was a renal ward), I had to repeat myself over and over again that the airconditioning was too cold for me & that I was constantly freezing. When my body temperature reached 35 degrees, they decided to 'approve' an electric blanket for me - and then at the last minute, they changed their minds because my next temperature reading, while I was waiting for the electric blanket to arrive, was 36 degrees! I positively felt tortured. And I thought doctors & nurses understood that kidney patients readily feel cold. I felt like I was tortured for 1 week.
I don't know anything about photo-sensitivity but if it's documented in your medical file and is a recognised condition - then they CANNOT ignore it. It's all there in black & white. If they are ignoring or neglecting this, are you able to write a letter of complaint to the hospital or any other appropriate health complaints regulatory body? That is what we are advised to do here in Australia if there is any unsatisfactory element of healthcare. If there is a formal letter of complaint, they are not able to ignore it. Is that how it works in the UK as well?
(Making a complaint is never an easy thing though. I'm still procrastinating about making my formal complaint).
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Thank you for your kind support Athena,
... unfortunately there is a problem about complaining when it concerns my suffering from photosensitivity,
because practically all public places and hospitals have these new artificial ultraviolet lightings installed
and if the complaints of the very few who suffer from photosensitivity would be taken on,
all these artificial ultraviolet lightings would have to be changed and that would be very serious money ...
... My sort of "compromise" has been for many years, that I am quite happy, if my suffering from photosensitivity
(as a result of my suffering from Lupus/SLE/MCTD etc.) is being taken into account and taken care of,
by giving me a chance to be put into a place/room/corner where I am given a chance to switch off this light ...
... Lets hope things improve ...
Thanks again and best wishes from Kristina. :grouphug;
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Kristina, I don't know how your photosensitivity manifests itself but I have to just add that I find these new environmentally friendly ultraviolet lights to have a horrible depressing effect on me. The light is so dull. And any photo that is taken in that light makes people look awful as well! I think I can understand how some people can actually fall ill from them.
Hopefully from all the repetitive feedback you've given them, they will ensure you get a good corner with proper lighting in future.
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Unfortunately as busy as medical people are in a dialysis center, your file has probably not been read by more than two people and they need YOU to speak up for yourself. Be the parrot and ask for what you need. I have asked for TVs that are around and on to be turned off if no patient is using them due to it being a light source. I have also had to ask for the blinds to be lowered so street lights are not glaring into the room at night ay my center.
In addition at Kaiser hospital I am like a vampire in my room. The lights are off and I want the curtain and door closed so lights and noise from the hallway are not bothering me. I have had to ask nurses to put on their work lights over the counter and try to keep from turning on the over head lights when coming in to do vitals. After explaining that the lights bother me they have always been nice about it.
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Many thanks for your kind understanding Athena and kitkatz, it is very much appreciated.
Fortunately "my" photosensitivity was being accommodated for
at my last dialyse-session and hopefully "things" are eventually getting sorted out.
Thanks again from Kristina. :grouphug;
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... After "jumping" through many (uncounted) "hoops" because of former cancer-issues ...
... and after waiting patiently for a considerable time, I have just been informed
that I have (finally) been put onto the UK-kidney-transplant-waiting-list...
... But I still have to continue being patient, because I have also been informed,
that waiting on the kidney-transplant-waiting-list can still take up to 3 to 4 years ...
... But at least I can be rest-assured, that I am now on the transplant-waiting-list ......
... and I feel truly ready for this next adventure...
... and ... hopefully it all goes - eventually - well ... :grouphug;
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Congrats Kristina, maybe next time at your (probably) yearly transplant waitinglist visit you can ask what your antibodies are.
Wishing you all the luck and love in the world, Cas
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Thank you Cassandra for your lovely thoughts, they are very much appreciated !
The doctors told me during my medical transplant-waiting-list-work-up that I am a "lucky girl" because no antibodies were found ...
... They were quite surprised that despite my dreadful health-history I could avoid blood-transfusions etc. during all those years ...
... and hopefully it brings good luck in the future ...
Many thanks again from Kristina. :grouphug;
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Thank you there ...that's what I get to do now seems my fistula isn't working right ...
Get to get catheter in neck bone ..... Funny happened though .... Nice short little asian lady was humm ing in my ear' as she put needles in , then when she started having trouble she cussed....(under her breath). Made me feel right at (ship) home !
She said it was to deep and surgeon would work on it.
Needle has to be near vertical and was to short.
Anyway , I don't like to talk
about it ---
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Thank you there ...that's what I get to do now seems my fistula isn't working right ...
Get to get catheter in neck bone ..... Funny happened though .... Nice short little asian lady was humm ing in my ear' as she put needles in , then when she started having trouble she cussed....(under her breath). Made me feel right at (ship) home !
She said it was to deep and surgeon would work on it.
Needle has to be near vertical and was to short.
Anyway , I don't like to talk
about it ---
I am very sorry, Blake nighsonger, that I don't understand how the above can be connected to my thanking Cassandra
for her lovely thoughts and my mentioning doctors telling me during my medical transplant-waiting-list-work-up that I am a "lucky girl"
because no antibodies were found ... and that doctors were surprised that despite my dreadful health-history
I could avoid blood-transfusions etc. during all those years ... and that it hopefully brings me good luck in the future ... :grouphug;
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Thank you there ...that's what I get to do now seems my fistula isn't working right ...
Get to get catheter in neck bone ..... Funny happened though .... Nice short little asian lady was humm ing in my ear' as she put needles in , then when she started having trouble she cussed....(under her breath). Made me feel right at (ship) home !
She said it was to deep and surgeon would work on it.
Needle has to be near vertical and was to short.
Anyway , I don't like to talk
about it ---
I am very sorry, Blake nighsonger, that I don't understand how the above can be connected to my thanking Cassandra
for her lovely thoughts and my mentioning doctors telling me during my medical transplant-waiting-list-work-up that I am a "lucky girl"
because no antibodies were found ... and that doctors were surprised that despite my dreadful health-history
I could avoid blood-transfusions etc. during all those years ... and that it hopefully brings me good luck in the future ... :grouphug;
Hello again Blake nighsonger,
I do hope I have not offended you in any way or form with the above comment ...
... But for me it is such a huge step forward to be accepted & activated on the kidney-transplant-waiting-list ...
... and I am extremely grateful to be given this enormous chance ...
Best wishes from Kristina. :grouphug;
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Kristina, your husband is a very lucky man. Congrats on being placed on the transplant list!! :clap;
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Thank you, del, you are quite right and it is true that my husband is a very lucky man:
If he had not offered to me one of his kidneys and had gone through the whole transplant work-up,
his cancer would not have been detected because he had no symptoms whatsoever ... and we had no idea ...
... We are still amazed about it all and we still can hardly believe it ...
... and now the cancer is gone and he is healthy again ... (touch wood it continues like that !!!)
... Many thanks also for congratulating me to have been placed on the transplant waiting list ...
... Since receiving the letter (... it was really THE letter...) ... I have been "walking on clouds"
... and I am very positive about the future and hope for the best...
Thanks again from Kristina. :grouphug;
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well your being a bit sensitive my fine lady. as I had no idea that you were going through all that when I spelled out my shareing. I'M so happy to read about your husband finding out about cancer that's so great!!!! I had similar thing happen and I'm grateful too.
yes ma'am that's fantasic too about your listing up date, I still have to lose about some wight. sure i'm not too swiff on this form, board, group information thing here so i'll try to be careful not to post on were I shouldn't. sorry, hows the peanoi playing doing? I love liustening to classical music steering 1170ft. of tow. I't allways shapen my wit. and calms me going throu a tough spot. or holding it up in the wind.
thanks you it's sure nice to share this experience here with you you benefit me and others greatly.
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Actually it seems to me your both lucky to have each other, though I my experience luck goes to those who deserve it, clearly you both deserve the good fortune to have each other.
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Many thanks Blake nighsonger and Michael Murphy for your kind thoughts, it is very much appreciated.
It is true, my husband and I have been lucky when we met each other ...
Strangely enough, we both grew up in different European countries with different background, different education & different languages
and we have remained soul-mates ever since we first met ... According to East Asian/Chinese folklore, there exists a "Red string of fate" and according to this myth, there is an invisible "red cord" tied around the ankles of those that are destined to meet one another in a certain situation to be together and to help each other in a certain way ... And the two people connected by "the red thread" (or "Red string of fate") are destined to be together, regardless of place, time or circumstance... This "magical cord" may stretch or tangle, but never break and this myth is similar to the Western concept of "soulmate" ...
Thanks again from Kristina. :grouphug;
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Hello, my Dad told me once that there is no such thing as luck... only when he met my Mother
....so I can appreciate that story of the "red string"
.
... My folk had a period in there lives where there good friend Gerrie lived with us (4 kids) (she sleep on couch ). Anyway, she worked with the folks, selling door to door , "Dare to be Great" stuff like (cosmetics)
....she was and is the kindest most fun and classiest lady (went to church in mornings and every ("get it over with") Saturday night ones ... He would make her laugh every time he say to her ...using her last name he'd say......you know what excites me most about you?....................... is that I'm not married to you".
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Welcome to dialysis family.
We do our best to encourage and support one another.
God bless!
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Thank you TheLivingWater, what and eye opener to finally be here ....my perspective has change greatly.
Hope your folks are doing well...
Best to you
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Hello again,
... After starting with my dialysis-treatment, my "two little fighters" became a bit lazy and they certainly "took their time" to function ...
... But, nevertheless I continued with my kidney-friendly vegetarian diet all the same and also adhered strictly to my liquid-intake-limit every single day
(a little over 1 liter was allowed each day) ... and then, all of a sudden, during the past few weeks, my "two little fighters" have surprisingly started
to become busy again, especially during the night ... and all this came along as a huge surprise ...
... This new development also shows clearly during my dialysis-treatment, because I can't have the "usual" amount of liquid taken off any longer ...
... and I do hope my "two little fighters" continue to show their good spirit for as long as possible ... :grouphug;
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I learned a new thing this week Residual Kidney Function or RKF, was reading a paper on Renal Uroligy Ners RUN about how to keep RKF in patients that still have function left. The thing that impressed me is that the paper recognized how much RKF improved patients lives. I know how much better my life is with RKF and it was nice to see someone in the medical establishment acknowledge how important it is. Plus I used to not be happy getting up every 2 hours at night to answer natures call. After dialysis I began to appreciate it now I don't care how often I get up.
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Many thanks for sharing your experiences Michael Murphy, I appreciate your kind thougts very much.
It seems that Residual Kidney Function is very important for our ESRF-survival in the long term and I must say that I also don't care how often I need to get up and "go for walkies" to the bathroom during the night because I am very grateful that my "two little fighters" still provide me with their service after all these years...
To have Residual Kidney Function certainly improves the quality of life despite dialysis and hopefully it continues for a long time to come...
Many thanks again from Kristina. :grouphug;
P.S. My daily cup of peppermint-tea continues to inspire the function of my "two little fighters" and it seems to keep them going...
... and so does my daily glass of fresh lime-juice made from half a lime which is mixed with filtered water...
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LOL I am more of a 'Lemon' person, as I like my lemonade, but since becoming diabetic have been only enjoying it rarely.
Lime, well, I like it in Key Lime Pie! Other than that maybe a slice, or two, stuffed down the neck of a Corona. But there again, I rarely have that but maybe one or two bottles a year. Many years none. But last year I think I set a personal record, NINE. All within two months. It was a hot summer.
I may have to get into that peppermint tea. I have some but very rarely get into it. It is one of about a dozen in the cupboard. How much, how often, I don't doubt body size can make a difference. I'm sure my 225 pounds may require more for my size than you are using. Suggestions are appreciated.
I know a Lady that keeps near one hundred different tea's, using many as treatment of a number of common conditions with some degree of success.
It just adds weigh to my belief that all things are here for use to use responsibly. But mankind has forgotten what each plant is to be used for, and how each is to be used.
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Hello folks,
Thanks you for the writings hope this fines you well.
Just a note to tell you I got activated on transplant list!!!!
Lost the weight I needed thanks to dialysis.
Thanks talk with you later
Best to you
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Hello folks,
Thanks you for the writings hope this fines you well.
Just a note to tell you I got activated on transplant list!!!!
Lost the weight I needed thanks to dialysis.
Thanks talk with you later
Best to you
Congratulations, Blake nighsonger! That is great news! Hope you continue to get good news and share it with us! You have reason to celebrate this weekend! :2thumbsup;
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Thanks PrimeTimer,
Beautiful day to do just that!
take care.---- thanks again.
Blake
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... Having "jumped" through all the "hoops" to be accepted on the kidney-transplant-waiting-list and since being listed on the kidney-transplant-waiting-list,
I had to change my life-style a little and was finally forced to "jump" straight into the 21st century and "make friends" with a mobile telephone,
plus, I have to have it switched on at all times 24/7.
... The luxury of the "old days", when I still could resist the need of a mobile telephone are gone and now, all of a sudden,
whenever the telephone rings I "jump" a little and wonder whether or not it is THE telephone call I am eagerly waiting for ...
Such is life...
Kristina. :grouphug;
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... Having "jumped" through all the "hoops" to be accepted on the kidney-transplant-waiting-list and since being listed on the kidney-transplant-waiting-list,
I had to change my life-style a little and was finally forced to "jump" straight into the 21st century and "make friends" with a mobile telephone,
plus, I have to have it switched on at all times 24/7.
... The luxury of the "old days", when I still could resist the need of a mobile telephone are gone and now, all of a sudden,
whenever the telephone rings I "jump" a little and wonder whether or not it is THE telephone call I am eagerly waiting for ...
Such is life...
Kristina. :grouphug;
Kristina, that is great news to hear that you are on the transplant list now! Hope you get your phonecall and soon!
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... Having "jumped" through all the "hoops" to be accepted on the kidney-transplant-waiting-list and since being listed on the kidney-transplant-waiting-list,
I had to change my life-style a little and was finally forced to "jump" straight into the 21st century and "make friends" with a mobile telephone,
plus, I have to have it switched on at all times 24/7.
... The luxury of the "old days", when I still could resist the need of a mobile telephone are gone and now, all of a sudden,
whenever the telephone rings I "jump" a little and wonder whether or not it is THE telephone call I am eagerly waiting for ...
Such is life...
Kristina. :grouphug;
We know this feeling well...with our daughter being a heart transplant candidate in 1990 *they gave us a pager that would go off constantly-in error* and got one call for a real potential donor, which ended up being a no go due to the child being a victim of child abuse...which broke my heart for that child :(
Our heart would race every time that dang pager went off. :o
Now, that our daughter is near the top of the list for a kidney(I am one of the caregivers-if we see a call that shows up as "Mayo Hospital" our hearts skip a beat or two
No call yet, but all the docs are excited as we are...and we even have the personal cell of one of the 7 transplant docs that will be doing the procedure. So we wait, patiently!
Good luck to you Kristina!
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Many thanks Prime Timer and Xplantdad for your kind encouragement and lovely thoughts, I do appreciate it very much.
It was a very decisive moment for me when the doctor told me that I have been activated on the transplant-waiting-list
and it is also very uplifting, because it implies that my body is capable to take on the strain of a transplant plus the transplant-anti-inflammatory-medication etc.
... and I very much look forward to take it on and hope for the best...
Many thanks again for your kind thoughts from Kristina. :grouphug;
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Today (Sunday morning), for the first time in ages I was able to sit down at the piano and play my favourite pieces by Bach and Couperin without any mistake
and in total concentration and relaxation ... and this makes me very grateful to my husband and the nurses who have assisted me so much
to get my fluid-restrictions right and to get as precise as possible to get the right amount of fluid taken off during dialysis and not only that,
but because of all that positivity some of my "esprit" to agree with my existence (despite everything) has returned again as well ... :grouphug;
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kristina, your update brought me so much joy!
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Many thanks for your kind message LorinnPKD, it is very much appreciated and I do hope your fistula heals up well
to start your in-clinic hemo and I also keep my fingers crossed that you are successful to follow your dad's shining example.
Best wishes and good luck from Kristina. :grouphug;
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Today (Sunday morning), for the first time in ages I was able to sit down at the piano and play my favourite pieces by Bach and Couperin without any mistake
and in total concentration and relaxation ... and this makes me very grateful to my husband and the nurses who have assisted me so much
to get my fluid-restrictions right and to get as precise as possible to get the right amount of fluid taken off during dialysis and not only that,
but because of all that positivity some of my "esprit" to agree with my existence (despite everything) has returned again as well ... :grouphug;
That's a great update! Stay healthy.
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Thank you iolaire, your kind thoughts are very much appreciated and I shall try my very best to stay as well as possible for as long as possible with regular exercising walks around the block etc. ...
... I also try to compose myself in order to try and continue with my poetry (translations etc.) and I also try to continue with my paintings and hopefully things have a chance to go along a little better ...
... Of course, it becomes ever so difficult at times and it certainly takes much more strenghts to try and continue, when the process of dialysis takes away so much strenghts, energy and durability ... but I live in hope and hopefully I shall be lucky and get a transplant and then hopefully all the needed strenghts, energy and durability may come back for me to continue with my work and art ...
Many thanks again from Kristina. :grouphug;
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I thought I would post a little up-date about my life on dialysis (just over two and half years now) with emphasis on how I manage.
Just to recap, I am on haemo-dialysis at a dialysis centre; I have a ‘Tesio Line’ chest access, 3 weekly sessions, 4 hours each session.
Fortunately I have had no problems with the ‘Tesio Line’ and hopefully it continues like that. The access site is cleaned with an antiseptic solution each week and covered securely with a sterile drape. I protect this area with my life. When I shower I always have the shower-head at leg height and use a flannel to clean my upper body very carefully thereby avoiding any water contaminating the sterile drape. I am extremely careful not to pull or jerk the line so as to avoid the line dislodging. For me there are absolutely no compromises here. This is my ‘LIFE LINE’.
At my dialysis centre there are two types of dialysate solution (A6 & A28). I commonly use A28 because it is a potassium-low solution which I need because as a vegetarian my potassium intake with regard to food & liquid may be higher than normal. My monthly blood test would show the potassium level and reveal whether any adjustment needs to take place.
I do not drink liquid at dialysis sessions. I only have an egg sandwich plus a ‘small’ mixed salad composing of new potatoes, olives, gherkins, tomatoes, all mixed with a little cider-vinegar and olive oil; this is my early evening meal and last of the day on dialysis-days - yum! Yum!
I can adjust my potassium level by monitoring and adjusting my food intake. All in all my potassium-level blood results are nearly always within the nominated parameters.
My sodium level is always within the nominated parameters, because, firstly, I never use any salt, and secondly, I keep away from any food which may contain raised amounts of salt; granted, one cannot entirely avoid salt but by adopting such a strict limitation I can still keep the level in the normal range. Salty food makes one want to drink and this is seriously not good for me as a dialysis patient.
Since the day I first began dialysis I have kept a ‘dialysis diary’ for every session: recording weight & blood pressure before & after, fluid taken off, dialysate type, and any other experience related to my dialysis-treatment which is relevant. I also record my weight every morning before a shower. One soon easily gets into this simple routine and I must say it has been, and still is, very useful for numerous reasons.
There are two "things" I cannot control: iron levels and the red blood cell count. To assist in their control I need occasional iron infusions, and ‘Epo’ to stimulate the bone marrow to produce oxygen-carrying red blood cells, as and when the specialist deems it necessary.
Dialysis-sessions can be difficult to endure. By dividing the time into several interests, the time goes much quicker. For me, I like to read a magazine or an interesting book or do my crosswords in the first two hours and then I have a little computer-device on which I watch some of my favourite films or explore new programs and also I like to listen to classical music concerts. All this keeps me very busy and enjoying myself as best as is possible during the four hours.
When I get home I always do some gentle exercises like cycling with my legs and just a few other types of movements which get me out of the “cramped” feeling which one gets on dialysis.
Surviving and having some sort of life whilst on dialysis is a tricky business.
I have noticed over those two and a half years of dialysis, that it helps me greatly and makes my life much more easy and stable when I follow this type of strict dialysis-life-style because it provides me with much more energy and makes me feel much more positive about my life. So, the more I adhere to this strict regime of my vegetarian diet and strict liquid-limitations, the better my body reacts and the easier I can try to do things I like. It is very tough, but worth doing.
I know dialysis is my life-support, and without it I would have died two and a half years ago. For me the fantastic invention of dialysis has allowed me to continue with developing my interests and reaching goals which two and a half years ago would have been impossible, had it not been for my dialysis-treatments. I look at it this way, in a positive way, and work my life-style out to achieve positive results.
I am now looking forward to the next chapter in my life, which will be the good fortune to have a kidney transplant.
But whilst I am on dialysis, however long it will be, I am determined to give it my best effort.
Kristina. :grouphug;
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That was a good read Kristina, thanx for sharing, and keep it up my darling
:2thumbsup;
Lots of love, luck and strength, Cas
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Good for you. It is always good when you find a way to make dialysis work for your life.
I look at dialysis as that part time job I go to three days a week. I have to show up for my own good.
Payment is a cleaner system and feeling better during the week.
I have also developed systems for dealing with my whacky tummy during dialysis.
On dialysis days I always eat the same things before dialysis. It helps to keep a wobbly tummy happy during a six hour run.
I also take an Ambien before I go into dialysis. This has helped with anxiety I have had the last three years after my serious run in with infection and intestinal surgeries.
Funny how after fifteen years on dialysis I developed anxiety about it.
I have found my own routines help me to survive a six hour session in the chair.
Read my tablet for a while or a book. Sleep for two or three hours.
Have a snack or cheese stick and rye cracker and sliced apples.
I have a mini picnic going on.
Then TV watching or Netflix or reading something.
When I get that anxious feeling going I divert my attention to my tablet try to find silly things to look at.
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Many thanks Cassandra and kitkatz for your kind thoughts.
Yes, you are right, it is good to find a way to make dialysis work for us and it is a lovely idea to look at it like a part-time-job three times every week!
I very much like this idea, especially since “payment” for this part-time-job is a cleaner body-system, which assists us to feel better!
Many thanks again for your encouraging kind thoughts from Kristina. :grouphug;
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Kristina, you are blessed with intellectual curiosity. At the very least, the time you spend on dialysis gives you plenty of opportunity to read and learn, so well done you!
(You are also blessed with rigorous self-control!)
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Very neat read Kristina, Like you my daughter had a chest cath before her transplant. She wouldn't let anyone near it except me :)
When the surgical team pulled it out after transplant, the doc praised "whoever" took such good care of the access and the site around it. We just winked and smiled at each other!
:thumbup;
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Many thanks MooseMom and Xplantdad for your kind thoughts, it is very much appreciated..
... Hopefully "my" kidney transplant happens in the not too distant future and my mobile telephone is switched-on 24/7 and I also keep my fingers crossed for the best possible outcome...
Thanks again Xplantdad for sharing your experiences about the tesio-line (chest cath), it is quite re-assuring, because I was thinking for a long time which "access" to choose and because of my piano-playing, a chest-cath seemed to be the most suitable option for me. Of course, I have to take great care, because a chest-cath can become much more dangerous, if it is not taken great care of, but I do take the greatest care possible and thankfully it has given me no problems and hopefully it continues like that in the future.
Many thanks again from Kristina. :grouphug;
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Dear friends
Recovering from my transplant. Shall write more later.
Best wishes from Kristina. :grouphug;
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Congratulations! I hope all goes smoothly.
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What??? Really? This is the most exciting surprise. Congrats!
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I can't stop thinking about this wonderful news! I am so happy and so thankful! Please write more when you feel able! Take care!
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So wonderful Kristina! Wishing you an easy recovery.
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kristina, I am so delighted for you!
Wishing you a smooth recovery and good things ahead!
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Congrats Kristina! wishing you nice nurses, speedy recovery and best wishes from Cupcake!
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Dear friends
Recovering from my transplant. Shall write more later.
Best wishes from Kristina. :grouphug;
Kristina: That is good news! I'm so very very happy for you! Best wishes on your new life!
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:cheer: Fantastic news Kristina !!!! Get well soon girl!!!!
Love, luck and strength, Cas
:flower;
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That's terrific, Kristina. Best regards for a speedy recovery.
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The call will come when you least expect it.
My cell was at home charging when my wife got the call when we were at the vet with our little guy. "Best kidney you will ever be offered, surgery starts around midnight".
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Oh my gosh kristina! Fantastic news! Best wishes for a speedy and smooth recovery!
To be honest, my time on the list was short an easy. Got my first call only a few days active (good kidney but turned it down) and then got called again, in the middle of dinner (I remember it was chili, haha) a day or so later for my wonderful little bean (and pancreas). People that wait long, such as Kristina and others here, have my respect!
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Many thanks for your kind wishes, it is all very much apprecited. Still recovering, more later. Thanks again and best wishes from Kristina.
Just imagine it is a perfect match and I am so grateful.
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A perfect match is perfect girl!!!!
:cheer: :cheer: :cheer:
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Dear friends, I am still recovering from the operation and it is getting better. My new kidney works wonderfully well and I am so very grateful. I shall write more later and send you my heartfelt good wishes from Kristina. :grouphug;
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Hello again
Unfortunately my recovery from the transplant operation leaves lots to be desired. For starters, I suffer from permanent sleep deprivation since the kidney transplantation and that makes it impossible for me to move forward and find a way to recover. Unfortunately the medics cannot help me about this as it appears to be a problem within other patients who appear to be racially motivated towards me. Very sad. My only hope is to be discharged as soon as possible which does not make any sense if one thinks about the great skill of the medics and the great cost and great care a kidney transplant necessitates. Unfortunately I have come across a most terrible experience and hopefully this nightmare stops soon and hopefully I soon may have a chance to return as soon as is possible back to civilisation again as soon as I have a chance to return back home again. Who would have ever thought that my recovery from the long awaited kidney transplant could become so very difficult ?
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Hang in there Kristina!
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It’s always nice when someone graduates.
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Sorry to hear you are having this issue.
I will say the high levels of prednisone made me sleep very badly and have nasty dreams. That started to resolve as the prednisone was tapered down.
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Hello again
Unfortunately my recovery from the transplant operation leaves lots to be desired. For starters, I suffer from permanent sleep deprivation since the kidney transplantation and that makes it impossible for me to move forward and find a way to recover. Unfortunately the medics cannot help me about this as it appears to be a problem within other patients who appear to be racially motivated towards me. Very sad. My only hope is to be discharged as soon as possible which does not make any sense if one thinks about the great skill of the medics and the great cost and great care a kidney transplant necessitates. Unfortunately I have come across a most terrible experience and hopefully this nightmare stops soon and hopefully I soon may have a chance to return as soon as is possible back to civilisation again as soon as I have a chance to return back home again. Who would have ever thought that my recovery from the long awaited kidney transplant could become so very difficult ?
Dear Kristina,
I am sorry to hear you are having a difficult time while still in hospital. Is there a particular reason why they have not let you return home? Have you had complications with either the surgery or the meds? I had my surgery on a Sunday morning and was released just 3 days later; the transplant recovery unit was fitted with special HEPA filters to help prevent post tx infection, but even so, they told me that hospitals were dirty places and so they like to get their patients home as soon as possible. Now, I know the NHS may do these things differently than tx centers here in the US; is that why you are still in hospital? Are post tx patients in the UK just kept in hospital for longer? Can you demand to be released? Do you feel ready to return home?
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Many thanks for your kind concern and kind wishes. Unfortunately it was not "plain sailing" after the transplant operation. First of all I had the catheter "in" for a little too long, which enabled "it" to develop a nasty "little" infection and that took time and hopefully
I am soon in the clear to start getting better and start the process of recovery. :grouphug;
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It's very disturbing, and hard to believe, that other patients, for whatever reason, would be determined to make your recovery as difficult as possible. I'm sorry that you've had to encounter human nature at it's worst, when you should be feeling nothing but positive about the gift you have received. This is one of the most hateful stories I have ever heard. I hope they all get sepsis.
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O bugger Kristina, get better soon and stay strong!
Lots of love, Cas
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Dear Kristina, so sad to here your recovery is slow. Hang in there! I agree that getting home and into your own routine will be the best medicine.
You are such a lovely and positive person--sending you lots and lots of good vibes! You are much loved.
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Oh kristina, I am very saddened to hear your recovery has a few set-backs. :( You are a strong and intelligent woman so that I know you will get through this and be on your way at this new life soon!
I know that you are unwell so only explain when you are well enough, or, you don't have to explain anything further, as it is your right too. However, I am just pondering how sleep deprivation with other patients at the root could be possible. Are you in a ward? Silly question to ask as such a scenario wouldn't be beneficial to tx patients. At my tx, I had a private room on a tx-restricted floor. It was all very quiet and I only encountered other patients doing our walkabouts. Only issue with a patient was a poor man going through pre-liver transplant protocol (a lot of bathroom use) but that was it. I barely slept for 2 weeks though! Up at 2 or 3 am watching television...
I am sorry that you developed an infection. :'( But take heart! I developed a serious wound infection and having the incision opened, drained, and antibiotics solved it fairly quickly! You will be ok and on your feet soon! Take care! We are rooting for you!
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Many thanks for your kind concern and kind wishes. Unfortunately it was not "plain sailing" after the transplant operation. First of all I had the catheter "in" for a little too long, which enabled "it" to develop a nasty "little" infection and that took time and hopefully
I am soon in the clear to start getting better and start the process of recovery. :grouphug;
I just felt it in my waters that something was not quite right. Keeping the catheter in for too long smacks a bit of incompetence. Sleep disturbances are certainly an obstacle to a quick recovery. I hope things get better quickly.
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Dear friends, this morning I woke up feeling very relaxed about my transplant and the future looks much brighter now and I send you my best wishes from Kristina. :grouphug;
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:yahoo; :cheer: :yahoo; :2thumbsup;
Keep it up girl!!!!
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So happy to hear it! Don't forget those steroids mess with your head; my outlook improved the third week when I was down to the 5mg daily maintenance dose.
Good luck! Have a wonderful Holiday Season!
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That's very good news! I hope you can go home soon.
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Super news! :cheer:
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Hello friends, the latest is that now I suffer from a urin-infection and I wonder what is going on and it seems extraordinarily that "things" still do not get themselves right. It seems a rough ride at this moment and hopefully it gets better soon and my recovery starts hopefully very soon as well and ... I still live in hope ... :grouphug;
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Hello friends, the latest is that now I suffer from a urin-infection and I wonder what is going on and it seems extraordinarily that "things" still do not get themselves right. It seems a rough ride at this moment and hopefully it gets better soon and my recovery starts hopefully very soon as well and ... I still live in hope ... :grouphug;
Do you mean a urinary tract infection?
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You've had that catheter for four years, haven't you? Why did you choose a Tesio over a fistula?
You are usually a very thoughtful person, but, as Cupcake said, the meds could be messing with your head.
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You've had that catheter for four years, haven't you? Why did you chose a Tesio over a fistula?
You are usually a very thoughtful person, but, as Cupcake said, the meds could be messing with your head.
This post makes me wonder if I've misunderstood something, Kristina. Were you referring to the catheter you used for dialysis the catheter inserted into the bladder during surgery/post-op? I assumed it was the latter, but I could well be wrong. Apologies!
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Hello, I take heavy antibiotics because of an urin-infection probably come about due to the post-op-catheter. With my dialysis-chest-cath there were luckily never any problems during all those years.
I don't understand what cupcake means that the medicines could "mess up" my head, what could it mean ?
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Hi Kristina,
When Cupcake noted that the medications mess up one's head, she most likely was referring to the high dose of steroids, Prednisone, that patients receive post-transplant operation. This sort of drug, especially in the higher doses that patients receive after transplant, are notorious for causing sleep disturbances and mood changes.
The good news is that the dose of this drug is tapered down over time, to a very small management dose, that those symptoms/side-effects go away.
Take care and speedy healing.
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Many thanks for the explanation Ukrainian Tracksuit, it is very much appreciated. Fortunately I had no trouble yet with medication and I am very grateful about it because trouble with medication after a kidney-transplant was a fear I hear often mentioned. I am hoping now for my creatinine to drop down further and hopefully it does happen.
Best wishes from Kristina. :grouphug;
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I am hoping now for my creatinine to drop down further and hopefully it does happen.
I looked back on how long it took my creatinine to settle down to its final resting point with a cadaver kidney, it took from July 13th for my first set of labs to a lab result below with creatinine at 1.5 on August 29th, so almost a month and a half. It took roughly a month to get to 2. It took 2.5 weeks to get to creatinine of 3.8. So at least in my experience there is a fairly long slope down to the final resting point. This was with creatinine starting at 8.7 post transplant. (No dialysis needed after transplant.)
Best wishes.
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Many thanks iolaire for your comprehensive information, it is very much appreciated and makes me very happy and clearly shows, that after the transplant we need to be very patient. I have talked to a medical person who assured me that a vegetarian diet without any spices would go a long way because the kidney does not "like" to get "excited" about heavy spiciness. At the moment I try to learn as much as is possible about "mollicoddling" my new kidney as much as is possible so that we can "walk" for as long a road and as far as is possible in unison together. I am extremely grateful for this great surprising gift from my anonymous donor. Life sometimes turns out to become a real miracle. Just image, a complete stranger donating his kidney to me and the excellent medics operating and all turns out to become a real miracle. We have certainly become an extremely civilised and refined society in the truest humanitarian context and I am very grateful ... :grouphug;
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That sounds as positive and encouraging as the old Kristina. I hope you got a good night's sleep. "Sleep that knits up the raveled sleeve of care."
Iolaire, I read it took about two months to start feeling normal, so you were pretty much on track.
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Many thanks enginist for your kind thoughts, it is very much appreciated, especially right now whilst I try so hard to "get rid" of that nasty infection. But "things" look already a bit better and hopefully I shall have a chance soon to go home and hopefully my body finds a way soon to "settle" from the huge upheaval.
Best wishes from Kristina. :grouphug;
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Is this infection impacting your new renal function in any way? Are there any concerns about your new kidney?
Take care of yourself, and I am hoping you get to go home soon. Any word from your docs about when that might be?
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Dear MooseMom, this infection is being treated and it has not yet influenced my new kidney function, touch wood. I also wish to go home soon, but the doctors want to make sure and I am grateful for their great care. I shall let you know as soon as I know more and I thank you for your kind concern and send you my kind wishes from Kristina. :grouphug;
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That's very reassuring news, Kristina. Thank you very much for the update. :cuddle;
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Kristina, hope you are "up and at 'em" again real soon! But if the doctors want to keep you a bit longer I would definitely listen to them. Give yourself all the time you need to rest and recover because once you are back at home, no doubt you will enjoy a long list of things you will want to do and see.
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Dear PrimeTimer, many thanks for your kind concern. The doctors told me, that they want to be as certain as is possible, that everything is being reliably covered before they discharge me from hospital and there are still a few "bits and pieces" that need to be sorted in order to have it all covered in an effort to avoid nasty surprises later on. I go happily along with it because it sounds very logical and a good logical thought is always very convincing. Better take the time now and give me a chance to get as strong and as healthy as possible...
Thanks again from Kristina. :grouphug; :
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Many thanks MooseMom for your kind thoughts they are very much appreciated. My transplant really and truly was much bigger than I first thought. It was quite huge on my body and my mind was also very much under stress on occassions, but slowly and surely I am gettimg there ...
Best wishes and thanks again from Kristina. :grouphug;
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Whilst in hospital I have noticed that quite a few transplantees are plaqued by regular urin-infections (Urinary tract infections) and I wonder whether there are in existence some ways to take precautions and avoid such urin-infection?
Many thanks from Kristina. :grouphug;
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:flower; :flower; :flower; So great you are recovering. Good luck and get well!
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Many thanks for your kind thoughts kitkatz and fortunately my body has really started to "pick up" and I am finally on my way. Of course I have to drink an awful lot and this is a bit hard right now after all these liquid-restrictive years and I shall continue to give it my very best.
Best wishes and kind regards and thanks again from Kristina. :grouphug;
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You do sound appreciably better now than you did a week ago. I'm a relative newcomer here, but everything that I have read by and about Kristina indicates that you are a much-loved member of this site. Don't forget about us when your new kidney makes you busy with your new life, which may include placing a rose on Bach or Schumann's grave.
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Whilst in hospital I have noticed that quite a few transplantees are plaqued by regular urin-infections (Urinary tract infections) and I wonder whether there are in existence some ways to take precautions and avoid such urin-infection?
Many thanks from Kristina. :grouphug;
Hi kristina,
Some people are pre-disposed to UTI's from their biology - how they are made - so they can be a common occurrence for some. There are people who ended up on dialysis from congenital bladder or urinary tract problems, needed some forms of reconstruction, and resulting issues harmed the kidneys. These people go for transplant too and still the physical issues cause them to have more numerous UTI's. Women too have a propensity for more UTI's just in how we're made. We have a shorter urethra so bacteria gets into the bladder easier. Add in this quotient that these areas have naturally occurring bacteria and a suppressed immune system. So, UTI's can be common in tx patients and doctors always ask if you have any symptoms because it could become serious.
Anyone on the transplant floor who had a catheter is exposed to development of a UTI simply because it was there. Subsequently, when you have your bladder stents removed, the doctor may give you an antibiotic "just to be safe" since they are messing around with your urethra. I heard a lot about them right after transplant too and I was so afraid of developing one. Knock wood, at this point, I haven't.
To prevent them, in the best ways we can, a lot of it stems around good personal hygiene. (In general, not saying it applies to you, so please do not be offended!) But certain things like "wiping that area from front to back" decreases the spread of harmful bacteria. Always wear clean and breathable underwear. Drink a lot of water so that you urinate more frequently and "clean out" your urinary tract before bacteria have the chance to enter/grow. Being regular for a #2 (so, avoid constipation) apparently helps as well. I doubt you use such products but don't use things like "feminine sprays" or douches in that area. Anything that causes irritation.
It is always recommended to urinate after intercourse to "flush" away any bacteria. The science is really conflicting but I regularly drink cranberry juice. This was pre-transplant but when I got married, "les dames âgées" suggested it, on their experience. Hope this helps! You will learn as you go and be fine! :)
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Subsequently, when you have your bladder stents removed, the doctor may give you an antibiotic "just to be safe" since they are messing around with your urethra.
Standard practice at the center I used was bactrim + cipro, though they held my bactrim because of low WBC. The stent removal was full sterile procedure - drapes, sterile gloves, multiple betadine washing of my junk, etc.
Always wear clean and breathable underwear.
Aren't you always supposed to wear clean underwear because you never know when you will go to the hospital ER?
Semper ubi sub ubi.
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Yes, same here, regards the procedure. It happened in one of the "treatment rooms" with stainless steel scary things and a big screen to aid the doctor's passageway. It was cool to watch. But as you say, draping, betadine washing, some weird apron on the doc. Doctor brought in a student, asked my consent if he could watch, and I was like, ehh, who cares at this point. Again, like you, there is a Bactrim protocol, and concurrently, I had a prescription for amoxicillin for another infection, so they just extended that.
Doctor scolded me for having a full Brazilian wax because the complete lack of hair causes an easy passageway for allergens and bacteria. So, while the stent removal was easy/painless, I remember it clearly for that.
Haha, it's true, always wear clean underwear because you never know what happens! But, some people don't get that memo, as eww as it seems. It really says a lot about the world we live in when one of our locally shared papers had a small blurb to reiterate sharing underwear with someone else is a bad idea in regard to STI's. Gee, you think? :waiting;
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You do sound appreciably better now than you did a week ago. I'm a relative newcomer here, but everything that I have read by and about Kristina indicates that you are a much-loved member of this site. Don't forget about us when your new kidney makes you busy with your new life, which may include placing a rose on Bach or Schumann's grave.
Hello enginist,
It is most unlikely, that I would disappear ... after all, I shall always be involved with my kidney-treatment, one way or another and it is so important to keep involved with our treatment at all times ... and what better place to come along and see the medics and to come here?
Mind you, the idea to place a flower on the grave of Bach and Schumann sounds very appealing and I shall look forward to do just that one day. Not too long ago I placed a rose in our Houses of Parliament where the burial stone of Muzio Clementi (24 January 1752 - 10 March 1832), the composer, pianist, great pedagogue, music publisher, editor, piano manufacturer and conductor is permanently being placed. It was ever so sweet to watch how the MP's very kindly avoided to walk over my rose at his burial stone and it was quite a lovely experience.
Many thanks Ukrainian Tracksuit for your kind advise and the kind thoughts of "les dames âgées" about this. Mind you, it is so very important to keep absolutely clean at all times...
And Simon, you are absolutely right, we have to be ever so careful and because of the fragility of the new kidney our body is much too vulnerable to take on any risks and with these easy-going new washing machines, showers etc. we don't have to do too much to keep as clean as is possible anyway...
Thanks again from Kristina. :grouphug;
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I once placed a rose on Beethoven's grave. After touring his Geburtshaus in Bonn, I took a train to the cemetery in Vienna. As you probably know, one of the cemeteries in Paris holds the remains of a whole roster of the famous dead, including Chopin, Oscar Wilde, Proust, and Jim Morrison. Never heard of Muzio Clementi.
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I once placed a rose on Beethoven's grave. After touring his Geburtshaus in Bonn, I took a train to the cemetery in Vienna. As you probably know, one of the cemeteries in Paris holds the remains of a whole roster of the famous dead, including Chopin, Oscar Wilde, Proust, and Jim Morrison. Never heard of Muzio Clementi.
Hello enginist, your Beethoven-journey sounds very fascinating, lucky you! Bonn must have changed a lot since Parliament "went" permanently to Berlin?
... Muzio Clementi is called the original "Father of the Pianoforte" and his very own piano-production in the Cheapside-district of London is considered the very best in piano-production especially in tonality. His pianofortes "sing" in different tonalities i.e. the Harp, violin and of course, the piano, all in one instrument in the most beautiful singing tonality. His pianofortes are also still playable these days and they transfer you into a different world altogether. Muzio Clementi (23 January 1752 – 10 March 1832) at his time was the only musical rival of Mozart and became a best friend of Beethoven, especially since Clementi bought from Beethoven the rights to produce his scores in England at a very fair price (and Beethoven appreciated Clementi's fairness a lot!) and Clementi also paid Beethoven his due always in time. Clementi also produced the very first piano-learning-instruction and this instruction can be copied and bought from the British Museum Library... and it is well worth to purchase since it is the very best introduction in how to play the pianoforte. Clememti's main aim is to convey, how to play the Pianoforte in a certain way to convey a wonderful sensitive piano-playing, there is no "bash-banging" taking place but only a very sensitive wonderful, dreamy tonality. As you can see, I am pretty convinced about the good work of Muzio Clementi. He always conducted himself as completely unassuming, rather shy, never loud and his piano-production is still very much praised and his pianofortes are still the very best...
My recovery from the transplant still happens very slowly but I can already see the great changes. At the moment I feel a bit like a "drinking-machine" since I need to drink 3 - 4 liter of liquid a day and that is a big thing with my rather small body and I give it my very best ... I already feel much better and seem to steadily recover from the operation.
Best wishes and all the best from Kristina. :grouphug;
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I'm really happy how well you are doing girl. Maybe we can arrange a meetup next year?
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Ah Clementi! If you ever took piano lessons, you practiced a lot of Clementi. At least I did!
I have been twice to the Pere Lachaise cemetery in Paris to see the beautiful grave stones/mausoleums. Always a group of American teenagers sitting around, smoking and playing guitar at Jim Morrison's grave. He had died before they were born! But I was visiting Chopin, and he was dead before I was born-just barely.
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I'm so pleased that things are improving for you, Kristina! Well done! I can't wait for you to get home!
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I'm really happy how well you are doing girl. Maybe we can arrange a meetup next year?
Many thanks Cassandra, it would be a great idea to meet-up next year in December ...
Best wishes from Kristina. :grouphug;
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Ah Clementi! If you ever took piano lessons, you practiced a lot of Clementi. At least I did!
I have been twice to the Pere Lachaise cemetery in Paris to see the beautiful grave stones/mausoleums. Always a group of American teenagers sitting around, smoking and playing guitar at Jim Morrison's grave. He had died before they were born! But I was visiting Chopin, and he was dead before I was born-just barely.
Hello Cupcake, fortunately I never "had" to practice Clementi. I discovered his method when I started to learn seriously playing the pianoforte as a rehabilitation when I was first paralyzed on my right side after the stroke and my learning to play on the pianoforte with Clementi's method of The art of Playing on the Pianoforte, I really fell for it in a big way...
Now, now Cupcake, I can't quite believe that Chopin was dead before you were born-just barely, but it made me smile all the same ...
Best wishes from Kristina. :grouphug;
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Many thanks MooseMom for your kind encouragement ! I have come home now and things are still a bit difficult, but I try to give it my best ! Many thanks again from Kristina ... Still drinking mainly water nonstop as if there is no tomorrow and I am now finally reaching 3 liter despite my small frame and I do hope my determination gets me hopefully there ...
Best wished from Kristina. :grouphug;
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Many thanks MooseMom for your kind encouragement ! I have come home now and things are still a bit difficult, but I try to give it my best ! Many thanks again from Kristina ... Still drinking mainly water nonstop as if there is no tomorrow and I am now finally reaching 3 liter despite my small frame and I do hope my determination gets me hopefully there ...
Best wished from Kristina. :grouphug;
I am pleased to hear that you are home. Are you sleeping any better? Which things are giving you difficulty? Are you tolerating the meds well? So many questions! Sorry!
:cuddle;
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Many thanks again MooseMom, it is so good to be at home and I can definitely sleep much, much better, which is great and I have no difficulty with all the many medicines. What gives me real difficulty is my trying ever so hard to drink such an awful lot every day, which works quite amazingly well, but my new kidney function is not 20% yet and I wonder, whether or not it hopefully picks up a bit more function and is it still early days ?
Best wishes from Kristina. :grouphug;
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Thanks again for your kind wishes.
I shall make a point to prepare myself mentally for dialysis
and hopefully my whole body agrees with the new treatment as well
... and hopefully my body will also agree with the new medication
without getting into an allergic reaction because of drug-intolerance...
I shall do my very best to "embrace dialysis" and I shall also do my very best to carry on living
and hopefully I might be having enough energy once again to go back to my work and career.
Best wishes and thanks again from Kristina.
Kristina, you are an important member here. I want to offer all i can to help you through the beginning of dialysis. Please ask any questions you have and lean on those of us who are already there. We can help you get through this.
That was scary I accidently clicked onto the first page of this thread and read this! But it’s nice/good that Kristina survived dialysis and moved onto another stage of the kidney cycle four years later.
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Many thanks again MooseMom, it is so good to be at home and I can definitely sleep much, much better, which is great and I have no difficulty with all the many medicines. What gives me real difficulty is my trying ever so hard to drink such an awful lot every day, which works quite amazingly well, but my new kidney function is not 20% yet and I wonder, whether or not it hopefully picks up a bit more function and is it still early days ?
Best wishes from Kristina. :grouphug;
I do remember that my creatinine was reasonably stable in the early days but did slide around a bit as my meds dosages changed.
I don't know what a reasonable expectation is, to be honest. If a patient's creatinine is high after transplant and remains high, but other labs are within normal range, then I suppose the transplant can be called successful. We all now that creatinine alone is not the best indicator of kidney function. So I guess the question is what your other lab values are showing. What do your doctors say (other than to drink a lot of water)?
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Many thanks again, MooseMom for your kind thoughts.
... Apart from my Creatinine, all my other blood-tests seem alright and the medics told me, that I do well. Mind you, it is a bit difficult to comprehend it right now, when my whole body still feels very vulnerable and is still a bit painful and I still feel very weak after the big operation ... But altogether it is honestly getting much better, my spirits are on their way to be "happy go lucky" again as well and I can feel my whole body recovering and getting better and a little stronger. Most of all I look forward to be able and enjoy a lovely hot bath again, listening to a Vivaldi Concerto with some candle lights on, like I enjoyed in the "good old days" before my chest-catheter came along. Mind you, whilst I needed the chest-catheter I would never even think of complaining about it because. after all, my chest-catheter saved my life for a long time and it helped me such a lot and never gave me any problems at all, in fact, over the years it became my best friend...
Best wishes from Kristina and thanks again for your kind thoughts. :grouphug;
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Katrina--
My switch to a vegetarian diet about three months ago has just produced its first positive lab results. My GFR, which had dropped five points in a year, gained back every point it lost. This could be due to random fluctuations, but I attribute it to the diet, which I think reversed an ominous decline. Oddly, though, my glucose level shot up 50 points, and I'm not diabetic. What could be causing that? I did eat a bowl of sweetened corn flakes a few hours before the test. Could that have been the culprit? Either way, thanks to you and my nephrologist, who also suggested that I go vegetarian, I am now a true believer.
And thanks for the tutorial on Clementi. He sounds like he could be the Stradivarius of the piano.
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Moose Mom,
A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right." If you don't mind me asking, what does that mean? And what is the origin of the phrase? I can guess what it means in general, but what does it mean precisely? Thanks.
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Moose Mom,
A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right." If you don't mind me asking, what does that mean? And what is the origin of the phrase? I can guess what it means in general, but what does it mean precisely? Thanks.
I don't know the origin of the phrase, but I lived in the UK for almost 20 years, and it was a phrase I heard a lot. I speak an odd blend of Brit and Texan. It means the same as "I had a gut feeling", which is equally weird, I guess, when you think about it!
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Moose Mom,
A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right." If you don't mind me asking, what does that mean? And what is the origin of the phrase? I can guess what it means in general, but what does it mean precisely? Thanks.
I don't know the origin of the phrase, but I lived in the UK for almost 20 years, and it was a phrase I heard a lot. I speak an odd blend of Brit and Texan. It means the same as "I had a gut feeling", which is equally weird, I guess, when you think about it!
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Hello MooseMom, many phrases don't really make much sense as such, but they are such great fun, some are even very eccentric and I always like it very much because all that gives away some of the wonderful eccentricities here ...
Best wishes from Kristina. :grouphug;
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Katrina--
My switch to a vegetarian diet about three months ago has just produced its first positive lab results. My GFR, which had dropped five points in a year, gained back every point it lost. This could be due to random fluctuations, but I attribute it to the diet, which I think reversed an ominous decline. Oddly, though, my glucose level shot up 50 points, and I'm not diabetic. What could be causing that? I did eat a bowl of sweetened corn flakes a few hours before the test. Could that have been the culprit? Either way, thanks to you and my nephrologist, who also suggested that I go vegetarian, I am now a true believer.
And thanks for the tutorial on Clementi. He sounds like he could be the Stradivarius of the piano.
Hello enginist,
I am so glad that your vegetarian diet has already produced some good results and please don't be overly hard on yourself, life still should be a bit of fun (that is what my nephrologist tells me regularly, so I "just pass it on" ...). Of course, your GFR still could be fluctuating a bit, but you are definitely on your way and that is very recommendable. I am so glad that your nephrologist agrees with the vegetarian diet and it is so good that he supports you. That is really great for you! Well done !
I am also glad that you appreciate what I have written about Muzio Clementi, he is indeed called the "Father of the Pianoforte" and he has taught some of the very best students, for example the Irish composer John Field (26 July 1782, baptised 5 September 1782 – 23 January 1837) was his star-student who played regularly on a Clementi-Pianoforte for the Tsar of Russia (whilst Clementi sold many of his Pianofortes to the nobility in Russia...) and he also sold Pianoforte's to other nobilities within Europe and John Field had a great influence on composers like Frédéric Chopin, Johannes Brahms, Robert Schumann, and Franz Liszt ... Muzio Clementi also taught the French composer and violinist Paul Alday(e), who later became an important Professor of Music in the UK. Since Paul Alday(e) was Marie Antoinette's favourite violinist/composer at Versailles, he was forced to flee to the UK during the French Revolution, first to Oxford and later to Scotland and after that to Ireland (Dublin) to avoid conflict with other refugees, mainly because of his direct Marie Antoinette-connection. Paul Alday(e) remained in the UK as an important Professor of Music for the rest of his life and it was in Ireland where he wrote the first symphonies ever being written in Ireland...
... I very much appreciate Clementi's wonderful introduction on how to play the Pianoforte to make the Pianoforte sing and sound its very best. And of course Muzio Clementi's own production of singing harp-like Pianoforte's is still the very best ... Mind you, here in the UK there are unfortunately only two of the original-Clementi-Pianoforte's left ...
All the best and good luck-wishes with the vegetarian diet and all the best of luck with your GFR from Kristina. :grouphug;
John Field- Nocturne no. 5 B Flat Major Andantino - YouTube
https://www.youtube.com/watch?v=D4EhFkR8hSU
... I do apologize for these awful commercials, but this Nocturne no. 5 B Flat Major is definitely played in the very best and most tender way and unfortunately it is introduced first by these terrible commercials. :waiting;
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I'm not familiar with John Fields either. It's interesting that both he and Clementi were near contemporaries of Beethoven. Fields wrote a lovely little nocturne, which was a revelation to me. Schubert also worked with B flat major in one of his last sonatas. Alfred Brendel's rendition is my favorite, although Rubinstein was also a wizard of the keyboard. John O'Conor certainly does justice to the Fields composition, which seems nearly flawless to me. Wikipedia says that Clementi wrote the first sonata. I have to listen to the first sonata, so I'll try to find it on YouTube. But now I don't want to pull myself away from John Fields.
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Whatever the origin, it's a strange phrase. It may be used more by women than by men. If that it is true, it could be related to the amniotic fluid, which is often referred to as water. This female-only attribute may be why women are associated with prophecy and intuition.
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I'm not familiar with John Fields either. It's interesting that both he and Clementi were near contemporaries of Beethoven. Fields wrote a lovely little nocturne, which was a revelation to me. Schubert also worked with B flat major in one of his last sonatas. Alfred Brendel's rendition is my favorite, although Rubinstein was also a wizard of the keyboard. John O'Conor certainly does justice to the Fields composition, which seems nearly flawless to me. Wikipedia says that Clementi wrote the first sonata. I have to listen to the first sonata, so I'll try to find it on YouTube. But now I don't want to pull myself away from John Fields.
Hello enginist,
i am glad that you appreciate John Field and his wonderful composition. I very much prefer him to Chopin because Field sounds to me so much more true and honest. He is one of the very best.
Best wishes from Kristina. :grouphug;
John Field, Nocturne n. 2 in C minor, with score - YouTube
https://www.youtube.com/watch?v=BrnSxYyG2ZE
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...I was told by medics that the first three months are expected to be the hardest/harshest after a kidney-transplant. How was your experience ? So far I have "only" managed four weeks after the transplant and most of all I still feel like resting most of the time.
My body still feels total exhaustion and a bit of pain after the transplant four weeks ago, but I haven't "got the nerve" to take painkillers, as painkillers could hurt/damage my new kidney and I have never ever taken any painkillers with my own kidneys either and they have lasted me for decades despite being in kidney failure and I suspect their lasting so long is in part connected to the fact that I have never ever taken any painkillers.
I would like to know how other kidney transplant-patients have managed in the first four weeks after the operation? Were they in some bother and pain and needed practical help and a bit of encouragement ?
Could they manage their household, their shopping and/or go for regular walks already ? I have not ventured to do any of it yet. My body still seems to need lots and lots of rest.
Many thanks for your kind answers from Kristina. :grouphug;
P.S. My blood pressure now still fluctuates between 159/71 to 174/82, which is a little bit high, even though I am taking regular antihypertensives; so it cannot be low blood pressure that makes me so exhausted and tired. I am wondering whether I have become anemic, but the doctors would have surely already picked-up on this and surely done something about it.
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Doing fine 3.5 months out.
Side effects were tingling in right hand from tacro (has largely subsided) and bilateral pedal edema, worse on right side. Still dealing with edema, feeling good, pissing like a racehorse (neph has me on lasix to reduce fluid load and edema).
MD visits down to once every 3 weeks and labs only once a week. Had one biopsy a couple of months out that concluded "nothing to see here, move along....".
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Yes, Kristina, I too prefer John Field to Chopin. Field is more lyrical, Chopin more meditative. The former's compositions have a lucid clarity that makes Chopin sound muddy at times. I just downloaded two of his albums from Amazon.
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Keep in mind that I’m younger and thus, could rebound quicker.
By Day 4 post-op, they wanted me up, about and walking the hall. Slowly, it happened.
Like you, I was advised that the first 3 months are the most difficult in recovery as well as in dealing with a newly suppressed immune system.
I had a pancreas and kidney transplant. The kidney side offered minimal pain. The pancreatic side was more painful.
I took painkillers. One thing that I think is misunderstood is that not all painkillers are metabolized by the kidneys. For example, while I had CKD and “surprised” my doctors with how much life I squeezed out of them, I sparingly took painkillers. My nephrologists (including transplant) only prescribed those that are metabolized by the liver. (My liver works like a champ too, so there’s been no damage.)
My transplant team sent me home with a painkiller prescription, and later, only acetaminophen. These highly trained medical professionals would not have signed off to use such drugs if they believed they would hurt a newly transplanted kidney.
(It is the anti-rejection drugs that are harder on the kidneys anyway. They are the ones that do more damage over time than a occasional painkiller.)
After post-biopsy kidney pain, the tx team told me to take acetaminophen.
Naturally, I was advised to avoid all NSAID drugs, so that’s not a problem. (Minus the low-dose aspirin prescribed to prevent renal vein thrombosis.) Just something to consider.
By 4 weeks post-tx, I began doing grocery shopping and going to the mall. They were short outings (maybe a couple of hours). We flew home (same province) in a plane with no issues at all about two months post-op. (Just germ precautions.)
Both organs picked up working right away. I had no edema by a month and my egfr was routinely over 120. So, literally, I was a brand new person.
I spent a fair bit of time resting simply for the sake there were hours to fill in a day.
Due to the high protein/calcium diet that the tx nutritionist recommended, the biggest change was the addition of animal protein in my diet. So, I needed encouragement to eat in the first month.
My only issues now post tx are low blood pressure and low hemoglobin. The low hemoglobin is due to the immune-suppressives stifling the business in the bone marrow. As a result, the tx team is pushing for the inclusion of red meat .... and I just can’t. Egfr still around 120. Feel good.
Really want to get back to vegetarian eating but the hemoglobin issue is holding me back.
So yeah, the first month and then first 3 months were fairly straightforward. It’s only settling down into a very boring routine that I need encouragement.
Dear kristina, as I am sure you know, everyone is different. Your body will take as much time it needs to heal and feel well again. Sometimes it takes longer than other cases. Don’t get discouraged or impatient. You will have a lot of time with your new kidney so focus on healing. A lot of how we recover depends on our physical condition going into the operation and HD is not always kind to all the bodies reliant on it to live. So relax and give your body some time! :cuddle;
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UT--
I had an iron infusion that raised my hemoglobin from 9 to 13, which is at the low end of normal. To boost it even higher, I take iron supplements from the drug store. So far, they've raised it to 13.5.
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I was out walking as soon as I got home but I was beat afterwards. I was still sort of beat one month out when I went back to work after one month. I realized why they wanted me part time but after the first week back I was full time. They did say the exercise is important. I would recommend trying to get out for short walks even if that leads to an immediate nap afterwards.
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Many thanks for your kind answers, it is great food for thought and very much appreciated.
One thing is for sure, it is much more complicated, than I first thought it would be ...
Many thanks again from Kristina. :grouphug;
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As others have said, everyone is different, and recovery for one person can be very different from that of another.
My body didn't have to go through dialysis or SLE, so perhaps for those reasons my recovery was pretty easy. (I'd had to have a hysterectomy in 2008, and recovery from the transplant was a tea party in comparison.) I was generally quite healthy despite the progression to renal failure, so I count myself lucky in that regard.
Kristina, can I talk to you about painkillers? I can understand your reasoning behind not wanting to take painkillers, but there is no honor in suffering unnecessarily. I was sent home with a prescription for painkillers. I filled the prescription but I never needed it. You know that you should not take NSAIDs like Advil, but paracetamol is quite safe. If you are in pain, that can make recovery slower because you will not want to get up and move about and take your little walks like you've been used to doing. Pain can also make it more difficult to sleep (just when your body really needs good quality sleep), and pain can also increase your blood pressure (which your new kidney will NOT appreciate!). I took paracetamol (Tylenol) when needed, but I did not need them for long. I could say more, but I'd only be repeating what UT has already posted.
So, please think about it, OK? I hate the thought of you being in pain that can easily and safely be well controlled.
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Many thanks again, MooseMom,
I have asked the doctors and they told me that Paracetamol does not hurt or harm the new kidney and can be taken when in pain.
Mind you, my main problem at the moment is still total exhaustion and tiredness and I do not seem to have quite recovered from the exhaustion of the operation.
This tiredness/exhaustion is quite strange, because "usually" I am recovering very quickly and try to be up and running, but this time I still need lots and lots of rest and the doctor thinks this is quite normal and understandable because of the major operation.
Fortunately I have been re-assured, that "everything is going according to plan" and nothing has to be adjusted or re-adjusted, because "things" are going very well.
Many thanks again from Kristina. :grouphug;
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Also, keep in mind that not only are you recovering from a major operation, but you are also recovering from an infection AND your body is getting used to a cocktail of new medications. So, all in all, I think you are doing quite nicely! :yahoo; I'm glad your doctors are pleased, too!
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Many thanks MooseMom,
My body seems to slowly "come around" from the total exhaustion I felt after the huge operation and fortunately right now I don't seem to have side-effects from the medication either and hopefully (keep fingers crossed) it stays like that. I feel extremely lucky about this, because usually I am always the first one who suffers terribly from all possible side-effects of all medications I have to take, but this time my body seems to be pretty quiet about it all and hasn't complained yet. Isn't life strange sometimes ?
Mind you, I must say that a kidney transplant is at first definitely not a "stroll in the garden" to begin with and it can be a bit of a rough ride for the first few weeks to begin with and ... at first I was wondering what this was all about ... but fortunately it gets so much better with time and I can see now all the advantages of my transplant, even though my body still aches a bit from the operation and I am still very exhausted from it all. But now I can see the light at the end of the tunnel and all the advantages that come with my transplant, in fact, I feel to be truly on my way ...
Many thanks again and best wishes from Kristina. :grouphug;
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Hi Kristina...I am late to the party (Been busy and lost my password...LOL) Congrats on your transplant :)
We are so happy for you! :bandance;
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Many thanks Xplantdad for your kind thoughts. I have been very lucky, because the waiting usually takes much more time & patience and I was told that it was a good match and so it became luckily my term. Mind you, I am still going through it from one day to the next and I am drinking water "like a fish" and to permanently visit the hospital has become my "main occupation" at the moment. But, apart from an almost complete exhaustion, which makes me sleep a lot at all times, I am already doing much better and I look forward to my recovery.
... How is Holly doing and how are you? I always thought how kindly you supported Holly and I send my best wishes and seasonal greeting from Kristina. :grouphug;
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I would put sleep medication in the same category as pain medication, which is to say it's mandatory. I take a combination of pills that help me sleep 11-12 hours a day. Everyone knows that a good night's sleep is the best restorative. It sounds like you need more than you've been getting.
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I would put sleep medication in the same category as pain medication, which is to say it's mandatory. I take a combination of pills that help me sleep 11-12 hours a day. Everyone knows that a good night's sleep is the best restorative. It sounds like you need more than you've been getting.
Hello enginist,
Many thanks for your kind thoughts. I just had a chance to ask a doctor about my exhaustion and he thought, that it is not surprising that I feel exhausted, because I went through a huge operation and the first three months are the most difficult and most exhausting one's, because the body has to adjust to such a lot and to such a big change. The doctor thought my body is doing very well under the circumstances and he is not worried about anything whatsoever and nothing needs to be adjusted. Perhaps it is time for me to join him and to start to relax a bit as well. It is just such a big "thing" for me and my body ... after all, I have been in kidney failure since 1971/1972 and my body has been struggling a lot until now, including the past 4 years ago when I finally had to start dialysis. And now, all of a sudden, I have to "go to the bathroom" 24/7, including through the nights with a perfectly working kidney... :bow;
Best wishes and happy seasonal greetings from Kristina. :grouphug;
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I had a rather long job interview yesterday (4 hours), and the final interviewer commented on my high energy level. Not bad for 3.5 months post.
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I had a rather long job interview yesterday (4 hours), and the final interviewer commented on my high energy level. Not bad for 3.5 months post.
Hello Simon,
I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ? Could you please share with us some of your energy-level-tricks, please? I could do with some energy-tricks right now, as I hardly have any energy at all to get up from my "parked spot" on the sofa ...
Wishing you again good luck with the job and I send you my best wishes plus seasonal greetings from Kristina. :grouphug;
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Thanks again for all your kind wishes and kind thoughts, it is very much appreciated!
... Over the past few days I had "a little talk with myself" and it made me realize, that without dialysis
my life would definitely come to an abrupt end within the next few weeks ... or days...
... but with the help of dialysis I shall be able to continue my life and - with a bit of luck - I might be even able to continue with my work and career
and that would be absolutely magnificent ! Welcoming dialysis might give me also a chance to "be around"
whilst all the medical research into better kidney treatments carries on ... and who knows what might be discovered...?
... All in all, I shall welcome the opportunity to continue my life with the help of dialysis and hopefully
being on dialysis might "start a new chapter" in my life and this new chapter might "only" involve a few new routines...
Thanks again from Kristina.
-----an indomitable friend's spirit how cool this is hang in there Krisina!
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I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ?
I did not say I had high energy levels. I said the interviewer commented on my high energy level. There is a difference. ;D
I was so caught up in the topics we were discussing that it kept me awake and engaged. I do well as long as I keep doing something. As soon as I become both physically and mentally inactive I start to get tired.
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Thanks again for all your kind wishes and kind thoughts, it is very much appreciated!
... Over the past few days I had "a little talk with myself" and it made me realize, that without dialysis
my life would definitely come to an abrupt end within the next few weeks ... or days...
... but with the help of dialysis I shall be able to continue my life and - with a bit of luck - I might be even able to continue with my work and career
and that would be absolutely magnificent ! Welcoming dialysis might give me also a chance to "be around"
whilst all the medical research into better kidney treatments carries on ... and who knows what might be discovered...?
... All in all, I shall welcome the opportunity to continue my life with the help of dialysis and hopefully
being on dialysis might "start a new chapter" in my life and this new chapter might "only" involve a few new routines...
Thanks again from Kristina.
-----an indomitable friend's spirit how cool this is hang in there Krisina!
Many thanks for your kind thoughts, Blake nighsonger.
Mind you, this particular post of mine was written about four years ago, just after I had to start with my dialysis-treatments, but the thought has served me well and without it, I would not have had a good chance with my transplant, which came about a few weeks ago. But because of the exhausting "heaviness" of it all, I still have to take every day as it comes ... and again, without completely "sticking" right now to the new after-transplant-rules, "things" would certainly become much more difficult and much more complicated... so I better keep it as simple as possible for myself and "stick" to the very strict after-transplant-rules ...
Best wishes and seasonal greetings from Kristina :grouphug;.
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I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ?
I did not say I had high energy levels. I said the interviewer commented on my high energy level. There is a difference. ;D
I was so caught up in the topics we were discussing that it kept me awake and engaged. I do well as long as I keep doing something. As soon as I become both physically and mentally inactive I start to get tired.
Hello Simon, how are you doing right now?
i am still very tired and exhausted from the operation and I admire that you do well as long as you keep doing something.
I shall look forward to get there and do something in the near future as well.
Best wishes, good luck and seasonal greetings from Kristina. :grouphug;
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Hello Simon, how are you doing right now?
The xplant is doing well, but I have bilateral pedal edema, worse in the right leg. MD says it is very slowly getting better, probably a side effect of Tacro or Cellcept.
I plan on writing the donor's family at the one year anniversary. I'm still at a loss for words - hopefully I will think of what to say in the coming 8.5 months.
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Oh Simon ! I am so sorry and I do hope this bilateral pedal edema vanishes as soon as is possible ! You certainly don't want anything like that and hopefully you can recover as soon as is possible from this bilateral pedal edema and the transplant-operation ! I do wish you the best of luck !
I also have been thinking of writing to the donor's family at the anniversary in a year's time and I feel it is very important to think of it and to do that because I feel it is so important to inform the donor's family that they did a very important humanitarian gesture which in the process saved my life and future. Mind you, at the moment I would not quite know how to say it to the donor's family either, except for a simple thank you, but that would not quite be good enough for what they have done for me, but I am sure the right sentiments come to me in time.
I do hope you won't have to put up with this bilateral pedal edema for much longer and I send you my heartfelt "get well wishes" and send you all the best from Kristina. :grouphug;
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The edema is an annoyance, not a lifestyle destroyer. My doc ordered 3 ultrasounds and an echo to rule out blood clots and right sided heart failure. He did not order a contrast scan to check for iliac venous stenosis since the dye presents renal risk and the bilateral nature was anti-suggestive of venous stenosis.
It's interesting that even though I am only 60 my transplant neph ordered the high dose flu shot (generally recommended sarting at age 65), but waited until 3 months post transplant.
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Hello Simon, I do hope it all goes well for you and I wish you all the very best.
I am not surprised that your transplant-nephrologist ordered a high dose flu-shot for you, because it is not only the season right now for all different versions of the flu but we also remain for the first year after a transplant extremely vulnerable. I do hope it goes all well for you and I send you my best wishes and good luck from Kristina. :grouphug;
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Many thanks Xplantdad for your kind thoughts. I have been very lucky, because the waiting usually takes much more time & patience and I was told that it was a good match and so it became luckily my term. Mind you, I am still going through it from one day to the next and I am drinking water "like a fish" and to permanently visit the hospital has become my "main occupation" at the moment. But, apart from an almost complete exhaustion, which makes me sleep a lot at all times, I am already doing much better and I look forward to my recovery.
... How is Holly doing and how are you? I always thought how kindly you supported Holly and I send my best wishes and seasonal greeting from Kristina. :grouphug;
Hi Kristina...Holly is doing well. Today is the second anniversary of her kidney transplant. We celebrated by going to dinner tonight :)
We had an awesome weekend last weekend...check it out here: http://ihatedialysis.com/forum/index.php?topic=34929.msg528125#msg528125 :grouphug;
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Many thanks for sharing these wonderful pictures and stories, they are very touching and it is amazing how both families have found their way forward together. It reads and feels like a miracle !
I am so glad that Holly is doing so well and she looks and appears very happy and I thank you again for sharing !
I send you my best wishes, Happy Season Greetings and good luck in 2019.
Best wishes from Kristina. :grouphug;
P.S. Today I was thinking for the first time - since the transplant - to go for a tiny little walk and then I realized that I surely must feel a little bit better and it made me very happy...
I think tomorrow I shall wrap myself up with my warmest winter-coat etc. and shall give it a try and venture for a tiny little walk outside ... ;musicalnote;
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Many thanks for sharing these wonderful pictures and stories, they are very touching and it is amazing how both families have found their way forward together. It reads and feels like a miracle !
I am so glad that Holly is doing so well and she looks and appears very happy and I thank you again for sharing !
I send you my best wishes, Happy Season Greetings and good luck in 2019.
Best wishes from Kristina. :grouphug;
P.S. Today I was thinking for the first time - since the transplant - to go for a tiny little walk and then I realized that I surely must feel a little bit better and it made me very happy...
I think tomorrow I shall wrap myself up with my warmest winter-coat etc. and shall give it a try and venture for a tiny little walk outside ... ;musicalnote;
Hi Kristina..."baby steps". You will do just fine. So glad that you are doing better. Merry Christmas :)
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Hello again and many thanks again and also thanks for your kind encouragement, it is very much appreciated ... and you are right, I honestly still take little "baby-steps"... but I shall give it my very best ...
Thanks again and Merry Christmas. :)
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Simon, it sounds like you received a high-quality kidney. I've heard some people on this site say that dialysis is a huge drain on their energy levels. Others seem to go on unimpaired. But now you don't have to worry about it. High energy means that your health is robust.
I'm going to get a second flu shot in January. According to the New York Times, the vaccine loses 20% of its effectiveness per month. Having had sepsis, that kind of worries me. I've read that if you've had sepsis and then get the flu, your mortality rate goes up by a factor of ten. Like a recent transplant recipient, I avoid crowds, children, and enclosed spaces. Maybe someone can tell me why there are so few mentions of sepsis on this site. As a hospital-borne illness, it should be as prevalent as it is virulent.
Kristina, now that I've had time to listen to him, I'd have to rank John Field as one of the great discoveries of my life. I've always loved solo piano, and Field is up there with the best. The nocturnes, all 18 of them, are very nearly perfect. As Simon says, maybe I can think of a way to thank you in the next eight months or so.
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Kristina, now that I've had time to listen to him, I'd have to rank John Field as one of the great discoveries of my life. I've always loved solo piano, and Field is up there with the best. The nocturnes, all 18 of them, are very nearly perfect. As Simon says, maybe I can think of a way to thank you in the next eight months or so.
Many thanks enginist, for letting me know your delight of listening to the compositions of John Field. I am so happy that I could assist in your discovery !
His compositions are so delightfully sensitive without "overdoing it" and I like it very much.
I wish you many happy hours listening to his music and if you get the chance to listen ( hopefully on youtube) to his compositions being played on historical instruments of his time, Joanna Leach (1937-2011) was one dedicated pianists, who mainly played on historical instruments of his and Clementi's time. John Field played mainly on Piano Fortes (or Square Pianos) created by Muzio Clementi (1752-1832), and John Field (1782-1837), who worked for Clementi, whilst they toured Europe together with Clementi's specially produced Piano Fortes. Muzio Clementi was one of the best Piano Forte & harpsichord-players & composers during his time and because of that he could especially produce unique Piano Fortes, who had a very special sound-tonality with a damper and these pianos were considered to be the very best, we could say, Clementi created the Rolls Royce of the Piano Fortes ... Such Piano Fortes were never produced in such great quality again ( would perhaps be too costly these days) and unfortunately there are very few of these still in working-condition, but fortunately there are a few dedicated pianists to bring this unique Piano Forte - sound back to the public's attention ... and there are also a few very dedicated Piano Forte-restorers, who carefully restore these Piano Fortes and bring the wonderful unique sensitive sound of these Piano Fortes back to us ...
All the best and happy 2019 wishes from Kristina. :grouphug;
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Simon, it sounds like you received a high-quality kidney.
I got a KDPI from a 33 year old female. The Creatine runs a bit high (but still in the 1's) because it was small - my MD says it would be generating a 1 if in someone the same size as the donor, and not to worry because it works very well and a biopsy 3 months out showed everything to be in great shape. I am 106kg - a MAOG (Middle aged overweight guy), but not quite a MAFG.
Sp mod Cas
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Hello and Happy New Year and good luck to all in 2019 !
I am still trying to recover from my transplant-operation and I still feel extremely tired and fatigued, but there again, it is only six to seven weeks since my operation, so perhaps I should not be too impatient ...
Perhaps my recovery also takes a little bit longer, because of my health-history ~(in my case it is rather a sick-history) and also "my" ongoing Systemic Lupus Erythematosus (SLE) and all the other SLE-connected diseases.
I any case, I do hope to feel better soon and hopefully there is soon a little bit more noticeable energy to return, I could really do with that.
Fortunately I have no problems with the transplant itself, it feels totally "at home" with me and my body and I am very happy about that. It does not feel as if I have a new organ in my body, which is quite amazing. I also get along with the medication, in fact, two of the medications have already been reduced by doctors orders. My blood tests seem to be alright, there are no questions about it and if it would not be for the tiredness and fatigue, there would be no problem at all ... and ... perhaps I need to take my time & need to be more patient...
Best wishes from Kristina. :grouphug;
Sp mod Cas
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It is so wonderful that your doctors are happy with your new kidney function AND that you are doing OK with the meds. I am so very pleased for you! I know it must be frustrating to not yet feel 100%, but you are right to give yourself more time and patience. I know you will take good care of yourself.
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Kristina, I believe your kidneys began to fail in the early '70s, right? And they kept going for something like 45 years before you had to start dialysis. Isn't that also correct? I would like to know what your GFR was doing during those 45 years. Did it fluctuate wildly like the recent stock market? Or was it on a gradual but steady downward slope? In explaining the history of your kidney function, would you please express your GFR in the terms that we use here? Also, why did you choose a tesio catheter? Did you use that exclusively, or did you later switch to a fistula?
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And you're right: Elizabeth Joy Roe is sensational.
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Hello enginist,
Yes, it is true, my kidneys first failed in 1971 and in 1972 I was well enough to go forward and have a kidney-biopsy taken, which diagnosed me with chronic proliferative Glomerulonephritis and over the years, during recovering a little from the kidney failure, my kidney function started the process of deteriorating slowly, sometimes a bit more slowly and sometimes a bit more quickly and sometimes it stood still for a little while. Fortunately there was no wild fluctuation, but a steady and slow deterioration, which was as worrying and towards the end, just before I needing dialysis-treatments, it took all my courage to have my blood taken and face it. It was a steady decline and even so I was hoping for another miracle until the last minute, there was no repeating my good luck from 1971 when my kidneys recovered a little again, after I finally came out of the coma.
... I chose the Tesio-chest-catheter, because I felt that a Tesio-chest-line could give me the best chance to continue my life and a little of my piano playing. which I had learnt as a rehabilitation after I suffered a stroke and after a while my piano-playing developed into my great hobby and it was also great that I had no teacher, because that method allowed me to develop my own individual piano-style (... that was the original idea, but most of the time I was too tired and too unwell to be able and play the piano during my dialysis-treatment-years in the same way the same way as right now, when I am trying to recover from the transplant operation... I only used a Tesio-chest-catheter during all my dialysis-treatments and nothing else...
I send you all my best wishes for your future-dialysis-journey from Kristina. :grouphug;
P.S. We all know of the turmoil and uncertainty you unfortunately also go through before your body needs dialysis-treatments and you can always approach us here ... Good luck again from Kristina... and our good luck right now is also, that the dialysis-machines these days have become much kinder to our body and again I wish you all the best of good luck...
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Hello,
It looks as if the question about my being so "dead-tired" all the time since my kidney-transplant (the midst of November 2018) seems to have been solved. The nephrologist has changed my anti-hypertension-medication to a different brand and my husband and I are so relieved about it and, just to keep and eye on my being much better ... and to make sure, we look out that - in the next few days - I hopefully remain as much better as I have been feeling today, because I surely have been entering a much more lively world again and have left the "very sleepy always totally tired-world ... hopefully for good ... :thx;
Thank you very much and best wishes from Kristina. :grouphug;
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Hi Kristina that is so good to hear. What on earth was it that was making you feel that way? I can imagine you feeling so relieved. Now go and have (yet another ;D ) drink on me please :angel;
Lots of love, luck and strength, Cas
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Hi Kristina that is so good to hear. What on earth was it that was making you feel that way? I can imagine you feeling so relieved. Now go and have (yet another ;D ) drink on me please :angel;
Lots of love, luck and strength, Cas
Dear Cassandra,
Unfortunately I can't have :beer1; any of it, because my body has not tolerated any alcohol for many, many years :secret;...
... Please note, that the medicine that made me so unwell and reacted so terribly with my body, did so, because I suffer from Systemic Lupus Erythematosus (SLE) and that goes automatically with SLE-patients suffering severely from Drug-Intolerance as well ...
My "case" and "my" Drug-Intolerance are therefore very individual to me as an SLE-patient and because of that individual circumstance, I feel that it would be unfair to mention the name of this medicine, because it definitely is, according to experienced nephrologists, the very best kidney-protective anti-hypertensive medicine for kidney-transplants and I don't want to put-off anyone, who is prescribed this medicine, because it still is the very best anti-hypertensive-medicine for kidney-transplant-patients, except for some unfortunates like myself, who suffer from SLE and Drug-Intolerance ...
It only took a little longer to find out in my "case", because it looked at first, as if I suffered from the exhaustion after my transplant-operation, which was a bit heavy in my case, because of my medical history and fortunately the doctor had the right idea and changed my prescription and when I took the new anti-hypertensive-prescription, my life slowly returned to be reasonable again... and I feel that I am now given a fair chance to recover from the transplant-operation ...
Best wishes and good luck from Kristina. :grouphug;
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The prescription that made you feel so exhausted...was it a new hypertensive, or was it one that you had taken for a long time but had begun to interact badly with your new immunosuppressants?
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The prescription that made you feel so exhausted...was it a new hypertensive, or was it one that you had taken for a long time but had begun to interact badly with your new immunosuppressants?
Hello MooseMom,
The medication that made me feel so totally exhausted and extremely tired was a well-established kidney-transplant anti-hypertensive medication and I had started with it for the first time ever straight after my kidney-transplant. I don't know whether it was interacting with the immuno-suppressants or whether it was because of "my" Drug-Intolerance, but I suspect strongly that the reaction happened because of "my" SLE-connected Drug-Intolerance.
Good-luck-wishes from Kristina. :grouphug;
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Thanks for the explanation. I thought you had been taking hypertensives before your transplant; is that correct, or did I misunderstand something? If you had been, did they take you off that old medication, start the new one, find out that it did not suit you so then switched you to another? Is that right?
Sorry if I'm being rather thick! :P
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Hello MooseMom,
Of course, you are not thick !!! Please don't ever believe anything like that !!!
... I did take anti-hypertensive medication before the transplant and it worked well for me. Then, instantly after the transplant I was put on the - for me poorly tolerable - kidney transplant-friendly anti-hypertensive medication and when the nephrologists realized that this idea did not work for me, they put me back to the anti-hypertensive medication which I had already taken without any problems before the transplant...
Please don't hesitate to ask me whatever you wish to ask, you are always welcome ...
Best wishes from Kristina. :grouphug;
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... Next week I shall find out whether or not there is a future for my transplanted kidney and me or not.
Life sometimes throws bad surprises at us and hopefully a positive way forward can be found ... :grouphug;
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I'm so sorry you are confronting this moment. I can only imagine how upsetting it must be. I'll hope for the best.
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kristina, you have always been such a sunny and open voice here -- we are thinking of you and wishing you the best!
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Many thanks K&S and LorinnPKD, your kind thoughts are very much appreciated.
Best wishes from Kristina. :grouphug;
Fortunately the function has now picked up. . . not quiet as it should have, but nevertheless . . . it hopefully is on its way ?
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This journey is a real roller-coaster, it goes backwards and then again forwards, up and then again down, hopeful and then again all seems to be lost ... again ... in my case strong nerves are very much needed at the moment for the journey ...
Fortunately I have a very understanding, very kind and very professional medical team on my side and that makes all the difference and hopefully they are turning it around... :pray;
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Keep the faith, kristina! Your team will do all that they can to keep your and your new kidney happy together. Sometimes, some kidneys are slower to start, but they continue to do their jobs. Sending warm wishes that this week's appointment goes well. :cuddle;
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Wait, what? Has something happened? What's going on? I know your egfr and creatinine are not ideal, but I thought your other numbers were acceptable. Is anyone on your team talking about you having to return to dialysis? I don't like this. This is making me nervous. Please let us know what is happening.
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Many thanks, K&S and UT and MM for your lovely thoughts, I appreciate them very much. :flower;
Unfortunately I have suffered two infections, the second one has just been finished. But my creatinine is still very high and despite the fact that everything else of the blood tests turned out to be alright, the doctors want to find out why the creatinine still turns out to remain so high. But apart from the high creatinine everything is alight. :boxing;
Best wishes and thanks again from Kristina. :grouphug;
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I'm very sorry to hear you've had another infection. You've really struggled, and I know you must have had some very low moments. But I believe there is still hope, and I am counting on your team to pull you through this. Please keep us posted, OK?
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Hi Kristina please remember that it is most likely the anti-biotics you've had that raise your creatinine. I don't know how much you drink, but you might want to increase it. Your other bloods are fine, so you WILL be fine. I'm sorry you have to have this happening to you, but we're with you in spirit.
I forgot to ask if you are on (extra) Prednison?
Lots of love, luck and strength, Cas
:cuddle;
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Many thanks, K&S and UT and MM for your lovely thoughts, I appreciate them very much. :flower;
Unfortunately I have suffered two infections, the second one has just been finished. But my creatinine is still very high and despite the fact that everything else of the blood tests turned out to be alright, the doctors want to find out why the creatinine still turns out to remain so high. But apart from the high creatinine everything is alight. :boxing;
Best wishes and thanks again from Kristina. :grouphug;
P.S.Apart from being "alight" (those Freudian slips again...) :angel; "things" are also getting slowly alright again in their own time ...
Best wishes again from Kristina. :grouphug;
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Many thanks MooseMom and Cassandra. :flower;
It is true, the second infection brought me to a very low point, but now I am slowly returning to my hopeful and positive self again... and I am now also able to drink over three and a half liters of liquid (water, juice and coffee) every day ...
All the best wishes from Kristina. :grouphug;
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Hi Kristina please remember that it is most likely the anti-biotics you've had that raise your creatinine. I don't know how much you drink, but you might want to increase it. Your other bloods are fine, so you WILL be fine. I'm sorry you have to have this happening to you, but we're with you in spirit.
I forgot to ask if you are on (extra) Prednison?
Lots of love, luck and strength, Cas
:cuddle;
Thanks Cassandra, I shall have to ask the doctors if the raise of creatinine may be connected to my two episodes of infections after the transplant... Thanks for the idea. :thx;
... To my knowledge I am not on (extra) Prednison ...
Best wishes again from Kristina. :grouphug;
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Kristina I hope thinks turn back positive for you.
Re the prednisone When my doctor was worried about inflammation that he worried could be kidney inflammation or lupus he upped the prednisone to 20 mg from 5 mg (now back to 5 mg) and also started me on Plaquenil (Hydroxychloroquine) which I’m still on. He has not stopped the Hydroxychloroquine, I think he feels it’s safest to keep some level of drugs going despite my 20+ years of lupus remission (and his partners with strong lupus experience thinking it’s not lupus) and the clear AlloSure test on the kidney side.
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Thank you, iolaire for your kind wishes, I do appreciate them very much and wish you good luck as well with as little upsets as is possible.
It is very difficult to really figure out whether or not it is a flare-up or not, time will tell ... and hopefully it is false alarm. Lucky you being able to take Plaquenil, since Plaquenil was sold and taken over by another company and chemically changed slightly, I could no longer take them because of "my " drug-intolerance "kicking in"... :waiting;
Many thanks for your kind message and best wishes from Kristina. :grouphug;
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P.S. I feel a bit hard done by because I kept myself so well through all my four dialysis years, I never had any problems, but since the transplant everything goes wrong. I had already two infections with symptoms of the third one being under way, not much medical help under way, I am with no-transplant-patients in the same room, lots of coughing etc. and to me it seems no care ... what on earth is it all about ?
I feel really a bit hard done by... is it all about research or is there really a chance for help and medical care ?
Or could it turn out that I made a terrible regrettable mistake ?
P.S. The symptoms indicating an infection showing themselves from one minute to another and then they stay and then they stay and need urgent treatment with antibiotics. I have mentioned it to the nurses hours ago and I am still waiting for a doctor ...
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I don't blame you for feeling hard done by. It's really really frustrating to do everything you can to keep yourself well, to follow all of the rules, to be vigilant and to sacrifice, all only to seemingly lose control of things not of your own doing.
I am so sorry that you have been so dogged by infections. May I ask what is the nature of your current dilemma?
I don't understand why your hospital/clinic would leave you so close to others who may carry infection of any sort. To put an immunocompromised patient in that sort of situation does not make sense to me and seems negligent at best.
I sincerely do not believe that transplant is performed only for "research". Transplant itself is common. Immunosuppression is common, although it is true that how well these drugs work can vary wildly. Sometimes you can't know the answer to this sort of question, whether your decision to have a transplant has been a mistake, until a year down the line. That said, though, exposing you to infection is inexcusable, and I very much want to know just what the protocol for transplant patient protection is at your hospital/clinic. First, the catheter was in too long. Which other mistakes have been made that have resulted in your subsequent infections? That's what I want to know.
Try to hang on, Kristina. All is not yet lost. You've been a fighter for such a long time. This is a different sort of battle, but I know that you will give it all you've got. I know you are extraordinarily vigilant and driven to be successful. Don't give up yet, please. We are all on your side.
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Many thanks again MooseMom for your kind understanding.
From my side I feel I have tried my very best and I feel very disappointed and cannot believe, how everything with my health care has deteriorated since the transplant-operation ...I have tried my best and unfortunately I feel had no medical back-up. My blood pressure has gone up to 210 (the upper level) and I have suffered in the past from two cerebral hemorrhages and a stroke because of uncontrolled high bloodpreassure.
I have no idea where to go from here and unfortunately I don't know of an organisation assisting patients in despair when they seem to have ended up on the wrong road.
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Hi Kristine are you feeling any better?
Thinking of you
:flower; Lots of love, luck and strength, Cas
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I am so sorry to read of your woes, kristina. :cuddle; What sorts of infections are you struggling with?
When I see my tx doctors, they share an outpatient clinic with other doctors with patients there for other things. So, I hear you about concerns being around coughing people. At least in my case, the receptionists enforce a strict mask policy. If anyone has the sniffles, a cold, or never had a flu shot, they have to wear a mask.
We hear so many stories about kidneys taking right off from the start gate and doing well. And so, we don't hear as often about those kidneys that are a little bit slower to get going but take heart, they have long-term successful outcomes too. It may be slower but things get sorted out, and there is hope. Please don't lose hope just yet, kristina. You are a fighter and you can do this!
Anytime we make major medical decisions, we accept some kind of risk. I was hesitant to get listed for transplant because I was doing well on dialysis. It was scary to think of tossing that stability away for the unknown. I placed no expectations on post-tx life, even though everyone painted it as flowers and rainbows, as to not have my hopes in the gutter were something to go wrong. But, we make the best decisions with the best information we have and go forward. It is only up to chance and medicine how things turn out. Please, kristina, do not fall into despair quite yet, as it is still early for your new kidney, and things may turn around.
I can commiserate with you over feeling a lack of care. But, please know, your team wants the best for your new kidney and you. Successful outcomes are what keep their practices and programs going. They will try their best to help you even if it seems like they are a bit unfocused at times. Please take care of yourself and give yourself a big hug!
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Your post transplant coordinator is your line to help. I would tell them all of your concerns-despair is never a good feeling! They may have some suggestions that will help a lot.
I'm 3 months post transplant today! and my creatinine is 1.1! but I am battling a post op wound infection and have a big open owie in my belly. I go to the wound clinic 3 x per week and lug around a 5 pound pump to a wound vacuum 24/7; its hurting my back and really pissing me off. I've had 23 scheduled medical appointments for January, with blood tests, wound clinic, etc etc.Also the weather is terrible-its raining ice right now and going back to below zero in a day or two.
But I can see the light at the end of the tunnel and just keep plugging away. I am planning the trips I am going to take once I'm not tied down to so many dr appointments.
Good luck and know that you are in my thoughts and wishing you happier days.
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Kristina. I know little about TX as I haven't had one and am not even on the list. But I do have empathy and I'm sorry you're having such a rough time. I hope your luck changes soon.
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Remember: You are stronger than you know.
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Immunosuppressive meds can cause high BP. It take so many years to figure out BP meds and the time to take the meds. As a patient, I has to be initiated. Dicoare are too busy to take care of each patient.
Good luck.
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Many thanks for your kind and positive good wishes, cassandra, UT, cupcake, K&S and kitkatz, your kind and well-thought-out suggestions are very much appreciated.
Thank you cassandra, I feel today a little better and it makes all the difference.
And you are quite right UT, I made the decision over two months ago to go ahead with the transplant and unfortunately it takes very long in my case and despite the fact that the kidney seems to function well, everything else i.e. the medication etc. leaves a lot to be desired and gives me still a hard and rough time. But there again, doctors say that the first three months after a kidney transplant are the hardest to get over with and the second three months are the second hardest ...
Many thanks cupcake, I have again next week a meeting with the Post-Transplant-Coordinator and I have already started with a list about my current problems and hopefully it can be sorted out soon.
Many thanks also K&S and many thanks for your kind wishes. To be honest, at the moment I would not even be able to feel lucky or sorry for you because of you not being on the transplant-waiting-list right now, but there again I don't know whether I have such a hard time because of my suffering also from SLE/Lupus and connected Drug-Intolerance, which seems to make my recovery so difficult at the moment.
Many thanks kitkatz, I do hope you are right and I am, as you say, stronger than I know ...
And last not least many thanks, Michelle 2016, it seems to "fit", that Immunosuppressive-medicines seem to cause high blood pressure, because, since "my" Immunosuppressive-medication has been reduced a little, my blood-pressure seems to "behave" itself much better and does not give me terrible fears any longer (i.e. my history of cerebral haemorrhages and a stroke because of uncontrolled high blood pressure at the time), because at this moment my bloodpressure does not go that dangerously high.
Many thanks again for your kind and positive thoughts, they are very much appreciated.
Best wishes and many thanks again from Kristina. :grouphug;
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P.S. The reason why sometimes I am not quite there to answer straight away, is, because in the last weeks I have been in and out of hospital, sometimes admitted for a while/days/week etc. and the other times at the specialists and - unless I pay money for Internet-access to the hospital, there is no Internet-access to be had and - being unwell and in hospital I think it is in bad taste to try and make patients in their medical distress pay money for Internet-access ...
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Kristina - I know what you mean about hospital charges. The hospital I am most often in actually charges you to watch TV after 11 in the morning. However I found a solution to Internet access away from home years ago, when I was having to stay at my boss' home a lot. Found it by accident. I had a row with the company who provided my landline and Internet access and told them to shove their service. Then I realised that without a landline, none of the other ISPs could supply me. In the end I got a dongle. I get far more bandwidth than I use per month (and I watch a hell of a lot of online TV, although not in HD) and it costs very slightly less than the contract I had with Virgin for Internet access. I can take it anywhere use it when in hospital, when on dialysis, etc at no extra cost. Strongly recommend the service (but avoid the company called "3", they are crooks). You just get a small USB thing about the size of a cigarette lighter, plug it in your laptop, and can use it anywhere you can get a mobile 'phone signal.
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Many thanks Paul and what a great idea that is and many thanks again for telling me !
We have kept our DVD-collection from the "old days" and found in a sale on the Internet a small portable apeman-DVD-Player (very simple no remote) which can be connected to the electricity-system and has also some battery in it to be able and watch a film, in case there is no electricity-access available for patients and that kept me going until I was discharged after the transplant with infections. :'(
... Have you heard some positive news about your position on the waiting-list? I wish you very good good luck, good speed and all the best wishes from Kristina. :grouphug;
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Have you heard some positive news about your position on the waiting-list?
Have just had a Shockwave Angioplasty which apparently went very well, the doctor will review me in about three months and if all is still OK he will pass me as fit to go on the list.
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Hello Paul, I keep my fingers crossed and do hope it all goes well and easy for you !
Best wishes from Kristina. :grouphug;
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Thanks.
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Luckily I met at the transplant clinic a kidney specialist, whom I have met before.
The "usual" transplant doctors I meet were thinking of some "heavy" check-ups to find out why my new kidney is not quite as it should be.
But this doctor thought to give the new kidney more time to find its way to settle ...
I am very grateful for that thought because, after all, I have not needed dialysis since November 2018 and that means a lot and furthermore, it just could be that my new kidney really needs a bit more time in order to wake up and find its way and settle ... :grouphug;
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Luckily I met at the transplant clinic a kidney specialist, whom I have met before.
The "usual" transplant doctors I meet were thinking of some "heavy" check-ups to find out why my new kidney is not quite as it should be.
But this doctor thought to give the new kidney more time to find its way to settle ...
I am very grateful for that thought because, after all, I have not needed dialysis since November 2018 and that means a lot and furthermore, it just could be that my new kidney really needs a bit more time in order to wake up and find its way and settle ... :grouphug;
That sounds like a good choice after the rough few months you have had. Good luck.
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Thank you, iolaire for your kind good-luck wishes.
How is your transplant going? Do you have to take many different medications? Or have the doctors reduced the amount of medication you have to take?
It certainly seems to need lots of thought to get it right with the medication for every individual patient ...
It seems now that I was lucky to have had my transplant at the time when I had it, because with my dialysis-treatments I needed to take more and more medication as time went by and it did not look good for the future and did not go into the right direction either ...
All the best from Kristina. :grouphug;
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How is your transplant going? Do you have to take many different medications? Or have the doctors reduced the amount of medication you have to take?
Its going good, much easier once I passed the six month mark and should be a lot easier this year as I cleared out some of the other post transplant medical stuff like the parathyroid and fistula removal.
Meds wise I'm down to 3 mg evarsus (Tacrolimus), mycophenolate sodium (anti rejection), 5 prednisone, plaquenil and sodium bicarbonate. The tac level fluctuates and this is the lowest mg yet (that was also my best creatinine level at 1.32), this weeks labs will show if it needs to go back up. So far there has been few months were the tac level has not resulted in a change in the evarsus. The sodium bicarbonate is almost over - I'd guess in another month or so my last daily dose will be gone. So med wise its fairly easy, 5 pills at 5 am (timing my choice), 5 with breakfast and two at 5 pm.
Calcium is still just above the high post parathyroid surgery but my PTH is down to just above the high range at 82 versus say 130 prior to the surgery.
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Many thanks iolaire for the kind information you gave and thanks again from Kristina. :grouphug;
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Hello,
I am very happy to share my recent good news. My kidney function was 19% before and now it has climbed-up to 23%, hopefully meaning, that my new kidney is still continuing in its own way to slowly pick-up and this after nearly three month ! Hopefully it continues like that for a little while longer .... :bow;
I am quite ecstatic about the new development right now and the Doctor told my husband and me, that my recovery appears so slow, because the new kidney and I were already going together through a very rough time with the two nasty infections I had, one after the other. The first infection was due to my sharing facilities with one particularly not so hygienic female. But the second infection was a full blown urinary tract-infection and it became so bad, that at one point I was unable to tell the doctors details about where my husband and I are living and that was a very frightening and confusing moment ... :(
Fortunately the antibiotics helped a lot in my recovery from the transplant-operation and now it seems, my general recovery is going slowly ahead now and I also have to take less medication, possibly because of my weight (57 kg) with 1.67 meter in height and my blood-test-results are very satisfactory right now as well and that helps to reduce my medications etc. ... and ... my new kidney happens to be a very good match ... and it seems to like being with me and my body and me like being with "it" as well...
The doctors also want to "put in" a "stent" to straighten a "kink" between bladder and new kidney in an effort to increase my kidney-function further and hopefully it is going to happen without complications ... :bow;
I am so glad about the new development right now, because at one time I felt that my recovery-possibilities looked a bit grim and hopefully my new kidney picks up a little more function as well. That would make me even more happy and as it is right now, I am very grateful about how it is developing ...
Best wishes and good luck to all :grouphug; from Kristina.
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Great, lets keep the good news coming...
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Hi, Kristina:
I have a good news for you.
1. eGFR as the kidney function is not accurate for transplant patients. eGFR is calculated from creatinine level, gender, age, and race.
2. Creatinine level is more accurate for transplant patients who has only one kidney.
3. Creatinine level is the creatinine remained in your blood stream. It is the waste which is removed by a kidney. Creatinine is the end products of proteins from muscles.
4. If you have two kidneys now, two kidneys remove more creatinine from your blood stream. Your creatinine should be within normal range.
Wish you the best.
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What’s your creatinine level now?
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Hello Michelle,
Thanks for your kind asking.
My Creatinine-level changes constantly, but unfortunately it goes downhill and does not look good for the future with all the heavy added medication ... and I have still my two own "little fighters" with hardly any function left ...
The transplant gave me one kidney, but it did not really take off ... a few times it looked as if it would take off, but unfortunately it was wishful thinking plus trying very hard ...
Best wishes from Kristina. :'(
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Hi , Thinking of you, remembering the story or the "red string ."
Take care--
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Hi , Thinking of you, remembering the story or the "red string ."
Take care--
Hello Blake, many thanks for reminding me of the story of the "red string", that's so sweet. :thx;
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Hi, Kristina:
Let me know if you have any questions.
Take care.
Removed personal email address Mod Cas
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Not a good idea to post your email on an open forum. Better to PM that information to Kristina then delete your email address from the post.
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Not a good idea to post your email on an open forum.
Hello Paul,
Please tell me : Why is it not a good idea ? Did you go through a bad experience with it ?
Many thanks from Kristina. :grouphug;
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SPAM!!! Lots of people will take advantage of an exposed email address.
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Please tell me : Why is it not a good idea ? Did you go through a bad experience with it ?
Many thanks from Kristina.
There are myriad scammers out there running software that searches the web for email addresses. Posts here will remain for years, so although it is unlikely that any software crawlers will find in the short term, give them a year or two and Michelle2016 will be inundated with email from Nigerian generals and offers of a miracle cure for kidney disease. But the worst ones will be the "There is a problem with your bank account, please log in here and update (something)." and the "Message from Microsoft: A serious security flaw has been found in Windows that will allow hackers access to your private data. Please click here to download an update that will fix the problem." Both of these are designed to get Michelle2016's bank details. Most of us think we will spot the fraudsters, but that is when bad things happen. We get clever, the thieves get cleverer still. The only way to be 100% certain you will never fall for a scam, is to never receive them.
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Many thanks K&S and Paul for taking the time to give the needed information and it is very much needed and appreciated and hopefully Michelle won't get any problems.
I do take your advice very seriously, because having kidney trouble (with or without transplant) gives us days, where we are intellectually not in top-form, but surrounded by some ESRF-mist, through which we can hardly see through and that can be dangerous for us ...
Thanks again from Kristina. :grouphug;
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... This has been a strange day today and I am still very shocked.
I have just noticed (in another section of IHD), that moderator Cassandra has moved my topic "Correction" into the "off topic" section of IHD and that has shocked me very much.
If one member (Paul) is allowed to spread a lie about me (Kristina) and my answer has been put by moderator Cassandra into the "off topic" section of IHD, it seems that former IHD-standards and integrity have gone, meaning, that it is impossible for me from now on to rely on the truthfulness and integrity of IHD any longer.
If, for example I would ask in the future a question on IHD, how could I possibly rely on the truthfulness of the answer?
Very sad, but after such a shocking disappointment there is only one way forward and that is to move on ...
Bye bye IHD, it has been pretty good until now, but due to lack of trust from now on, that must be it ...
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Kristina,
You are a very intelligent woman and I am saddened that you feel this way. You know that I too have had issues in the past with this board (small ones) but that is part of communication, right?
Just a small clarification though. When a topic is moved, it is not done so with secretive or nefarious meanings. It simply does not belong under the heading or subforum under which it was originally posted. And so, moderators or admins move them, like housecleaning, to areas where they belong, so they can be better viewed.
For instance, the Correction was posted under Dialysis: General Discussion. As you know, with your experience here, that section is for the myriad of questions related only to dialysis. For your Correction thread, it did not concern any modality of dialysis, thus it got moved to a space where it could be discussed freely, and not be hidden among postings of say, oh, fistula questions or fluid loads. I hope you understand this. I am willing to bet my hat that Cassandra meant no malice when she moved it and was simply shifting the thread where it ought to have been. And definitely, she meant no ill-respect towards you. Those involved will better see it there.
Please take care and think this over. Kind regards.
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Yes, exactly right, UT.
These types of incidents showcase the inadequacy of social media. Misunderstandings of tone and intent are rife. Communicating efficiently is difficult in front of a screen. So much of communication is non-verbal.
I am glad this discussion has been moved to the off topic forum because it is always a good idea to, from time to time, discuss how we can better communicate on an online forum such as IHD.
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If one member (Paul) is allowed to spread a lie about me (Kristina)
I'm not sure what you are talking about. I have disagreed with you, I have made comments about your posts or claims, and sometimes this discussion has got "heated", but I cannot remember ever making up a lie about you (and lying is not something I do). However if you feel I have posted something untrue about you and you have corrected it in the same topic, my original post will have been moved as well so people reading my post will still get to the post with your rebuttal. And if, for some reason, you did not post in the same thread but started a new one, then simply go back to the thread with my post in it and make another post in that thread with whatever point(s) you want to make about whatever I said. That way anyone reading whatever it was I said will still be able to see whatever it is you want to say about my comment.
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To Paul:
Thank you for reminding of me about the personal information.
Take care.
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To Kristina:
I just send you a private mail. Please let me know if you have any questions.
Take care.
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Hi, Kristina:
Following facts can affect creatinine level:
1. Water intake. At least 2000 cc or mL a day. Water helps to clear out creatinine from the blood stream.
2. At the beginning of transplant, the high dose of immunosuppressive med can affect the creatinine level.
3. Everyone is different. I know one story from another site that it took two year for one guy’s creatinine to come down from 2 to 1.3.
4. Don’t eat grapefruit.
Good luck and take care.
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Hello,
I am very happy to share my recent good news. My kidney function was 19% before and now it has climbed-up to 23%, hopefully meaning, that my new kidney is still continuing in its own way to slowly pick-up and this after nearly three month ! Hopefully it continues like that for a little while longer .... :bow;
I am quite ecstatic about the new development right now and the Doctor told my husband and me, that my recovery appears so slow, because the new kidney and I were already going together through a very rough time with the two nasty infections I had, one after the other. The first infection was due to my sharing facilities with one particularly not so hygienic female. But the second infection was a full blown urinary tract-infection and it became so bad, that at one point I was unable to tell the doctors details about where my husband and I are living and that was a very frightening and confusing moment ... :(
Fortunately the antibiotics helped a lot in my recovery from the transplant-operation and now it seems, my general recovery is going slowly ahead now and I also have to take less medication, possibly because of my weight (57 kg) with 1.67 meter in height and my blood-test-results are very satisfactory right now as well and that helps to reduce my medications etc. ... and ... my new kidney happens to be a very good match ... and it seems to like being with me and my body and me like being with "it" as well...
The doctors also want to "put in" a "stent" to straighten a "kink" between bladder and new kidney in an effort to increase my kidney-function further and hopefully it is going to happen without complications ... :bow;
I am so glad about the new development right now, because at one time I felt that my recovery-possibilities looked a bit grim and hopefully my new kidney picks up a little more function as well. That would make me even more happy and as it is right now, I am very grateful about how it is developing ...
Best wishes and good luck to all :grouphug; from Kristina.
Kristina: I hope you see this and will consider returning to ihd. Your posts are meaningful and very valuable. After everything you've been through, I hope your new kidney is now working more normally for you. Did they insert the stent to help out? Reading the posts about transplants actually written by those who have had one is important to me and I'm sure to many others here on ihd. Please do consider returning!
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Hello, I have been wondering about a few questions and wonder if another transplantee has had any experience with it and if, how was it approached ?
For example:
Are there any common kidney-transplant "teething-problems", not only the ones directly after a transplant, but also the ones which can "come along" after a while ?
And, how common is water-retention in the bladder, which is altogether well-functioning, except for some water-retention?
How common are swollen ankles after a kidney-transplant, despite the fact that the transplanted kidney is well functioning ?
How well are kidney-transplant-teams approachable, not only for and about the transplanted kidney itself but also for the "host" of the transplanted kidney? Is there any human angle included in their medical care or is it scientifically approached only from the transplanted-kidney-research-angle and the human angle "falls side-ways" ?
Thank you for reading and many thanks for answering.
Kind regards from Kristina. :grouphug;
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My oh my Kristina you are pondering lots of stuff!. No post transplant surprises after a few months, except getting adjusted to new diet. I was told 'protein, protein, protein!' while on PD, then after transplant I wanted to take good care of my kidney so wanted to limit protein; but I'm so happy to be able to eat dairy again. I asked for a phone call to a dietician and she recommended to shoot for 70-80 grams of protein a day. Bone doctor says 3 dairy servings per day so that's a big chunk of that.
Water retention in the kidney-do you mean post void residual? I don't have that, but I do sometimes need to get to the potty in a hurry! Probably no worse than any other 62 year old woman. I blame Little Susie, my new kidney for working so darn well. Its a wonderful 'problem' to have.
Swelling in the feet? None. I used to monitor the appearance of veins across the top of my feet when I was on dialysis-if I couldn't see any, then I knew I was fluid overloaded a little (yes, I was also watching weight and blood pressure). Now every day I look down and see beautiful veins all across my feet up towards the ankles. A sight to see for sure.
Barnes Transplant in St. Louis assigned me a transplant coordinator that I email. Has been very responsive to my questions. Sometimes a hiccup getting labs back as I use a local hospital as its closer and sometimes they aren't great at getting labs to the coordinator. I feel like the doctor and nurse coordinator remember who I am (I had a telemedicine conference in March with the doctor) so I appreciate that; I know from my work in medicine that sometimes the patients you remember are the ones that had extra problems or something unusual, so I'm not sure that remembering my specific issues is a good thing, but it made me feel more special. I feel like early on in this pandemic Barnes could have given us more transplant specific guidance (when everyone was freaking out n March/April) instead of just an all-hospital generic notice on what to do if you think you have COVID.No notices specific to transplant. When I had my telemedicine appointment I asked the doctor about transplant and COVID, and she told me that if I get symptoms, to get myself to a transplant center ASAP, not some local yokel as my transplant meds may need to be adjusted. At that time I was down in Florida, and my goal was to avoid ending up in the Army Corp of Engineers temporary field hospital (tent!) that they had set up on the local polo field. Imagine!
Hope this is what you were interested in. Sorry if I ramble on. Take care!!
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I had bilateral pedal edema after my transplant, much worse on the right foot (transplant side). I had multiple ultrasounds and everything except a dye based scan to check for iliac stenosis since it was not high on the docs differential and the contrast dye is not exactly renal friendly. 20mg lasix qd did not help, but adding 12.5 chlorthalidone worked wonders. I am now backing off the lasix to see if I really need it.
I no longer sleep through the night like I did in my dialysis years and am back to the pre-ESRD protocol of getting up to vacate once in the middle of the night.
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Many thanks for your interesting inputs, Cupcake and Simon, it is very much appreciated.
Cupcake, I am sorry about the protein you are asked to take in! Why is that? I was not told anything about my protein yet and I have always been a vegetarian & I must always keep an eye on my Potassium-readings.
It is interesting that you are with a transplant-coordinator! No such luck here. At least I have never had the luck of meeting one and I surely would appreciate some assistance and help. I do hope, you continue to do well and I thank you again for your kind input and please take great care, especially when you have to go to hospital and I wish you good luck. :grouphug;
Hello Simon,
Sorry about your experiences after your transplant and it really sounds terrible !
I also had some ultrasounds which needed kidney-unfriendly contrast-dye and I remember that they also had to put in a much higher dosage in order to see better what needed to be seen on the ultrasound.
I also don’t sleep through the night any longer and for me it is a bit frustrating, because I seem to lack some sleep on a regular basis and that makes trying to concentrate very difficult at times.
And sometimes I get the feeling – as a non-medic – that medicine is on occasion not quite refined enough yet and still needs to be worked out more, especially since each of us are individual cases with different needs, despite the fact that we have in common that we had a kidney-transplant. I wish you good luck and all the best and many thanks again for your kind thoughts and take care. :grouphug;
My biggest problem right now is for me to try and sort out my water-retention in the bladder, swollen ankles and the medical transplant-kidney-research-angle of most of the medics I currently consult with. Not only does it come over as if the human touch is missing, but there is also the problem of following so strictly some dialogue-boxes and forgone routes, when one should work together and not forget that there are frequent occasions, when it become necessary to try and think outside the dialogue-box in order to find a true constructive way forward.
Many thanks again for your kind thoughts from Kristina. :grouphug;
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Hello, Kristina. I've just seen your previous post and am concerned about the swelling in your ankles, although I don't know what that particular symptom means. Any time I see a doctor of any kind, once they see I'm a tx patient, they always look at my ankles, so I'm guessing that something is going on. Perhaps Simon Dog's experience will be helpful to you?
As far as I am aware, all transplant patients here in the US are assigned a transplant coordinator. I contact mine via my tx center's "patient portal" on their website. If I have any concerns or questions, or if SHE has any concerns or questions that are not absolutely urgent, we use this portal to communicate. She will send me updated standing orders for my usual labs via the portal (called MyChart) and any other orders or information or instructions.
My local hospital is part of a completely different medical system from my transplant center, but they also use a MyChart portal which I also use. Not only that, I can set up both MyChart patient portals to share information about my treatment/care/medications/medical history between the two hospitals. I love having this asset!
I have to say that in my experience, all of the medical personnel I've seen throughout all of my kidney "journey" have treated me with great care and compassion. I am very grateful but am sad to hear that you have not experienced the same compassion. There have been times when I've been distraught, confused and frightened, but I've always been treated with care.
I hope you will find some answers very soon!
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You can get some relief from ankle swelling by drinking turmeric tea, but of course, consult your doctor for primary treatment.
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Hello again and many thanks for your kind thoughts, it is very much appreciated. I wish our medical system could think and “work” in such a nice and appreciable humane way!
Unfortunately I have never ever come across a transplant coordinator who I could possibly approach for help and/or assistance. To my knowledge they do not exist in our health-system here.
It is unfortunately my personal experience that it is difficult to receive medical help if there is a medical problem occurring after a kidney-transplant, like, for example “my” constant abdomen pain which makes my life a complete misery, makes me wonder whether or not it is worth to carry on... Of course, I had “my” transplant “done” but since then I was left to fend for myself and that is the reason why I honestly regret that I was on the transplant-waiting-list in the first place.
Since “my” transplant I have been in almost constant pain in the abdomen region for which there was no medical interest offered yet and no serious examination put forward yet for the past two years .
My personal impression is that if a transplant is successful (i.e. the patient survives alive etc., it means for the doctors that all is well and how a patient lives afterwards seems completely irrelevant, because, after all, the patient had “their” transplant, is still alive and nothing else seems to matter. Whether the patient lives in constant pain does not seem to be of interest... I give you one little example how difficult it is for me to fend for myself and you decide for yourselves whether "my" transplant was worth the bother :
I had a urine-infection and found myself in terrible pain. In despair I first phoned my GP for urgent help, but first of all I was number 5 in a waiting-list to talk to the receptionist at the GP-Surgery. After a long waiting-time my waiting-number finally came up, but the receptionist to whom I finally could talk on the telephone did not let me speak to the GP but instead tried to get rid of me by telling me that I cannot talk to the GP-doctor because I rang at the wrong time and I should phone back again and try again much later on “in the afternoon”. I told her that I was a transplant-patient and was in terrible pain with a urine-infection but this did not impress enough to receive any help. After realising there was no chance here, I told her that I shall try now urgently to phone the transplant-clinic for urgent medical help, which I did, but there I also was not getting anywhere but instead was being send around in circles backwards and forwards and backwards again, with the result, as I was told on the telephone, that I had to phone the GP again “in the afternoon” for help. So, in the afternoon I went again through the aforementioned “time-waste” by waiting up my number to come along in order to convince the receptionist and then being given a chance to have the luck and talk to the GP? Fortunately one of the GP’s phoned me back very quickly, but nevertheless, the whole experience made me wonder what is the point of it all? Can you see, what I mean?
I feel that since I had “my” transplant I need medical help and assistance much more than ever before, especially because of the constant pain, but since the transplant I can’t succeed in receiving the medical help I seem to need. It is just simply horrible. Was it all worth it? Of course not!
Adding to that: my situation of being in constant pain makes me wonder whether it would not be much more humane if doctors let kidney-patients just “fade away” instead of letting them go through the silent horror of dialysis-treatments, put them on the transplant-waiting-list, let them hope for a chance to live and hopefully continue with their career, let them have a kidney-transplant (no choice of i.e. which transplant-kidney etc. given) and then let them live in pain from then on? What’s the point of it? Was I just being kept alive to give some young “wanna-be-hopeful-future-transplant-specialist” a chance to start somewhere, i.e. on me? I wonder about this question, because for me there was nothing liveable for the past two years since the transplant and it seems, I certainly can forget my hopes of continuing with my career or "enjoying my life" and it honestly was not worth for me to bother so far and ... I really do wonder ... especially since so very few transplanted IHD-members came back to tell of their experiences ... did they go through similar horrible experiences after their transplant ?
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Sorry to hear about your experiences and thanks as always for sharing them.
I really do wonder ... especially since so very few transplanted IHD-members came back to tell of their experiences ... did they go through similar horrible experiences after their transplant ?
I follow the IHD Facebook group now more that I'm not in the weeds of dialysis and there are few people there that have shared bad transplant experiences. But overall it seems like a small number of people have chronic issues and another small loose the kidney quickly.
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Kristina, I am so sorry that you are going through so much with your new kidney! I know from your posts how fastidious you were during your dialysis days pre-transplant and how well you were doing. Seems unfair that they want transplant recipients to take just as great care if not, more care with their new kidneys but then turn around and treat you like it is nothing. Your persistence tho obviously paid off and I hope you are back on track with feeling better. Perhaps they thought you'd break and just go away and be quiet but ha! they thought wrong! Glad you at least had the strength to hang in there. Please hang on to the hope for better days. I wish for easier times to come your way.
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I'm so sorry to hear about your struggle Kristina. After 6 plus years post transplant I understand how transplant is a treatment and not a cure. I feel like at any time some ailment will attack me and I'll be caught in some medical maze that takes over my mind and body with much second guessing and over thinking on my part. Most of my days are good but I try not to be surprised by my 1 to 4 day headaches or some days just not feeling "right". I think the continual pain you are experiencing is not right and you should be able to keep asking for help until it is figured out. I hope someone is able to help you and give you back some quality of life, otherwise what was the point. Best of luck and keep us updated.
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Hi kristina,
I am very sorry to hear of your situation. It sounds truly frustrating and no wonder it has led you to feel so defeated on the matter. Truly, I am sorry to hear this.
To answer your last statement enquiring why some transplant patients don’t come back here, who knows? On social media, some seem active, living their lives positively and no longer need this site. (At the same time, we knew that Aaisha.Dar suffered after her transplant and she has not been active?!)
I look at the wider transplant community as it is large. And not only kidney transplants. There are many, many people doing exceptionally well. There are exercise programs tailored to them, competitive sports for them, and to be honest, sometimes living a mundane average life is a success for them.
As iolaire stated, yes, some have indeed lost their transplants. Others that had serious health conditions ahead of time may be off of dialysis but continue to live with the ill-effects of the pre-existing conditions. Sometimes, for some people, kidney disease and a transplant are only part of the puzzle, and not the entire picture.
It is a very complex question.
In regard to doctors, I honestly understand what you are saying quite a bit.
Usually, a transplant team follows you closely for a year, because it is that period that seems the most treacherous. At that point, appointments or even “contact us immediately” transitions to maintenance care of every 3 or 6 months.
You’re right in that they have done their jobs (a successful surgery and a living patient) in that regard. They monitor blood levels to ensure you are hopping along okay and really only have concerns if levels specific to their concerns are out of whack. A stable patient doesn’t present much for those higher ups interested in research, but they are great “practice toys” for fellows at the clinical level, if you know what I mean.
We are thus told to rely on our GP or local nephrologist for care for all other sorts of things. And further, as we know, GP offices under our respective systems are swamped, and sadly, mentioning that one is a transplant patient doesn’t necessarily get one ahead in the queue.
(A lot depends on doctor too. For example, I barely ever call my GP, but when I do, they know to call back, because it is something big.)
When it comes to pain, transplant teams are only concerned if it is accompanied by a fever, nausea, vomiting or diarrhea, as that combination suggests rejection. Other than that? “Talk to your GP!” Still, you should not be suffering to the point that you are questioning life.
I, too, have abdominal soreness after tx surgery. (Not like your unbearable severe pain.) When I get examined, it is visibly sore. The soreness gets overlooked because my blood levels show no problems, my urine output is good, and there are no issues with my urine (no infection, no blood to suggest a UTI or even a thrombosis.)
It was finally revealed to me that it could just be scar tissue and nerve damage. The longer scar tissue matures, nerves regenerate, and that increases pain. That is at least my case, but that explanation was only provided to me like 2 months ago.
Attention always focuses on the new tx patients as they need to be watched more closely. It is probably more exhilarating for a doctor as well to have new or interesting cases than maintenance of patients that their bloods look “stable.”
What sort of abdominal pain are you having? Is it by the grafted kidney or other area? Can you ask for an ultrasound or other diagnostic imaging? Is this UTI related?
So sorry to ask these questions. You are obviously frustrated and I can understand why.
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Many thanks Iolaire, PrimeTimer, SooMK and Ukrainian Tracksuit for your heart-warming thoughts and I am very touched by your kind replies. Thanks again.
I am still totally shocked, because only a very thorough intensive research gave me a chance to find out, that "my" chronic pain (in the right-side lower abdomen, just underneath the transplanted kidney) is medically considered as very common after a kidney-transplant, as mentioned in the included independent medical report ...
Bad luck for me, that no-one of "my" kidney-transplant-team ever gave me any idea about a chronic pain afterwards or could have given me a warning before I trustfully went ahead with "my" transplant-operation ... Mind you, I am pretty sure that I would have taken the risk and would have gone ahead with the transplant all the same. But at least I would have had the chance to consider the warning and would have been given a better chance prepare myself for the worst. After all, the main reason for my getting on the kidney-transplant-waiting-list in the first place was my great hope to continue with my artistic career, i.e. continue with my paintings, having more exhibitions etc.
But as it looks right now, there seems to be hardly any chance for me to continue with my career and I am very disappointed about this and it is such a very sad situation ... and hopefully I have a chance to recover from this traumatising shock ... But even that seems very unlikely, since I am living now with chronic unbearable pain. It is also strange, that this chronic pain came on first of all very slowly i.e. on and off and then on again ... but now it has developed into chronic pain 24/7 ...
I am also very surprised, that this medical report mentioned mainly obese patients, whereas I have always been very slim and what is usually referred to as "petite"... so, where does "my case" come into it then? I really don't understand ....
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5258796/
World J Surg. 2017; 41(2): 630–638.
Published online 2016 Sep 16. doi: 10.1007/s00268-016-3713-9
PMCID: PMC5258796
PMID: 27637606
Chronic Inguinal Pain After Kidney Transplantation, a Common and Underexposed Problem
Marcel Zorgdrager,1 Johan. F. M. Lange,1 Christina. Krikke,1 Gertrude. J. Nieuwenhuijs,2 Sybrand. H. Hofker,1 Henri. G. D. Leuvenink,1 and Robert A. Pol 1
Author information Copyright and License information Disclaimer
This article has been cited by other articles in PMC.
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Our thoughts and prayers are with you. Think positive and have faith.
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Hi Kristina--
I'm sorry that you're suffering. I think that some of your symptoms suggest the presence of a UTI. You should have that tested right away. As you know, an untreated UTI can extend to the kidneys and cause pyelonephritis. You could lose the kidney. The pain you describe may well be a normal part of your transplant recovery, but it also may be a sign of infection. I don't know how it works over there, but the health care system seems to be failing you.
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Kristina, I would really want the doctors to tell you plainly--we can't do anything for you, we do see this sometimes but we don't know why it happens. I don't accept that this is the best that can be done. Perhaps that is the situation. Perhaps you do have the condition in the article. But perhaps you don't. Perhaps you have a condition that can be treated. This study took place 2011-2013 which is kind of a long time ago in medical science time. I agree with enginist that your clinic seems to be failing you. They aren't listening. I encourage you to keep asking for help. There's no one else who knows how intense or mild our pain is. You have more to lose by giving up than you do by continuing to speak up.
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Many thanks for your kind encouragements, Hereware, enginist and SooMK, it is very much appreciated.
When I meet the transplant-specialists, I shall ask all the questions I need so urgently being answered and I won't give anyone another chance to dismiss me without any helpful medical way forward ... and I shall also ask, whether my transplanted kidney is by any chance too large for my small body and might "squeeze" other organs with the result of giving me constant pain?
I feel that by hoping for the best for so long and trying ever so hard to avoid any conflict over the past two years, I have given away too much "leeway" and certainly pay the penalty by ending up in constant pain and my diplomacy and patience have finally come to an end right now ... and it is very unfortunate that vulnerable patients in constant pain like myself are being forced to fight and fight, instead of receiving medical help and assistance and kind understanding in the first place.
Many thanks again for your kind encouragement which is very much appreciated and please take great care and stay as healthy as can be in these difficult times and I send you my kindest regards from Kristina. :grouphug;
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No wonder you are angry and upset! Being in constant pain really saps your energy, and I am ever so sorry you are having to live with this. You have always been a strong advocate for yourself, and I know you will continue to be so. You have every right to have better care. You shouldn't have to fight for it.
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You should get a kidney scan, which can diagnose a multitude of issues, including the relative size of the transplanted organ..
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Many thanks again MooseMom and enginist for your kind thoughts.
In the not too distant future I shall have another kidney scan and (again) see the specialists again ... and this process has been going on for the past two years again and again ...
The specialists always only order the kidney itself to be scanned (that seems to be the only concern), but the pain I am experiencing is actually underneath the transplanted kidney and that fact has not yet been considered ...
The other problem is that the scanning-department only does exactly how the order is worded and no-one seems to listen to me, i.e. when I mention again and again and again, that the pain I am experiencing is actually underneath the transplanted kidney ... and unfortunately that precise "region" has so far never been ordered to be scanned ... and so the problem has been turned around ... and around ... and around again for the past two years ... without me getting a break, but the specialists are always re-assured that the transplanted kidney is still functioning and that seems to be the only concern.
Not only "my" chronic pain but also my frustration is becoming unbearable, when I feel like dealing with "functioning robots" every time I have to go to this "kidney-transplant-after-care- department" ... and I so wish it could be exactly that ... but unfortunately it seems to appear like a kidney-transplant-research-department ... :'(
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kristina, I just don't understand how your medical team continues to dismiss your concerns. The patient is often the greatest source of diagnostic information, and for your team to not listen to you is like ignoring blood work results. It's just so unprofessional and ignorant.
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It sounds like a novel by Franz Kafka.
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Many thanks again MooseMom and enginist, I am very grateful for your kind thoughts and ideas.
Franz Kafka? O no ! ... His thoughts and stories are a definition of depression itself and it is even more depressing to visit his home in Prague ...
... I read some of his his novels during my studies of literature and for me it is it not particularly healthy to come across his novels and read them, because of the awful experience of depression "one" comes across and "one" can easily notice whilst reading his stories ... But there again, his life-story was extremely terrible anyway and he had not much luck, except for being with the best of friends who always looked after him whilst he suffered from tuberculosis... His friends even insisted and made sure that his work would certainly be published ... But nevertheless, he is one of the very few writers I don't feel is "healthy for the mind" to approach, especially for people with health-"inflictions" i.e. ESRF etc...
... But I certainly can see the point you are making by "watching" my experience of going around in circles, backwards and forwards and backwards again etc., whilst trying to get diagnosed with this unbearable pain and it does honestly feel quite a bit "Kafkaesque".
But ... I saw the medics again and was completely checked-up with CT-scans around the painful "spot" etc. and finally I saw an important and very experienced surgeon who finally diagnosed that I suffer from a painful hernia which is very difficult to medically "spot" and diagnose and therefore needs to be studied at the CT-scan by a very experienced surgeon, which it finally did. (Exit Kafka)
So, with my recent thoughts about medics in general and some medics in particular, I stand corrected !
At least the terrible pain has found a logical medical explanation and I am so glad that it is not connected with the transplant itself and/or anything to do with the "big C" etc.
I was told to take it very easy and not to walk too much and/or not to carry anything heavy etc. and strangely enough I already feel a little better because at least I know now what I am dealing with and that knowledge takes the heavy weight of this long-winded terrible uncertainty away.
I was also told, that there is unfortunately not much of a chance for an operation to repair the hernia right now because of the latest "spike" with many more Corona-Virus-cases and because of that all the hospital-beds are needed at the moment, but I shall be operated on as soon as is possible and I shall see the medical team again early next year etc.
Many thanks again for your interesting thoughts MooseMom and this interesting comparison enginist, but please don't read too much of Kafka at the moment, whilst we all go through this terrible sad and depressing Corona-Virus-time ... I only mention this, because I think it takes lots of strengths for all of us to get through this terrible Corona-Virus-time and what is happening ... at this moment ... and reading Kafka only takes much needed strengths away ...
Many thanks again and take great care and many thanks again from Kristina. :grouphug;
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Oh, I am so glad that you got the answers you needed, and while I am sorry that you may have to wait a while for surgery, I am thrilled to know that you've been thoroughly assessed! Well done for persevering! Please let us know when you'll be able to get your surgery at last. Thank you very much for the update as we were all concerned.
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This is great news! I hope you don't have to wait too long for your surgery and can look forward to a good post-transplant life.
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Hey kristina!
While I am not happy to hear that you have been diagnosed with a hernia, I am pleased to know the source of your constant pain has been pinpointed AND that there is a solution. Indeed good news and very understandable why your shoulders must feel lighter!
I hope this pandemic finally gets under control at long last and you can be scheduled for surgery soon! Take care!
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I toured Emily Dickinson's house, and Beethoven's. I know that you, Kristina, have visited the graves of your favorite writers, composers, and painters.
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Imagine that, a hernia of all things! But I am very glad that you stuck with it and refused to give up without getting an answer, Kristina. Hope you are able to rest and avoid anything strenuous while you heal. Sometimes hernias take time but sometimes just a couple of weeks or so. Be careful and be kind to yourself. Please let us know how you do.
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Hello again,
Many thanks again for your very interesting and kind thoughts MooseMom, SooMK, Ukrainian Tracksuit, enginist and PrimeTimer, it helped me a lot to feel hopeful again and perhaps the operation might take place as soon as is practically possible, so that I can recover from it all and with a bit of luck I might hopefully get a chance to concentrate on my future and perhaps continue with my art and career again?
... Who would have thought, that it could be as complicated as that ...
... I also would like to wish you all a Happy Christmas-time and please take great care and best wishes from Kristina. :grouphug;
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... There also seems to be something going wrong with my hearing deteriorating and after a thorough hearing-test I was told that it must be connected to the anti-rejection-medication I am taking, since my hearing is not altogether deteriorating, but only certain parts, which is not the "usual" development of hearing-loss ...
So, now I am inflicted with two predicaments: 1) constant pain 24/7 for which I am forced to take painkillers every day and 2) a development of hearing-loss.
I shall see this Transplant-Clinic one more time to find out what they have to say and if this meeting is again unsatisfactory without me getting any answers, I certainly have to go most urgently elsewhere ...
... Just to think that I was promised that I could "finally go back to my work/career" after a transplant and in fact my whole life has become worse after "my" transplant, despite me doing everything right... and to think that this nightmare has been already going on for over two years without me getting any medical help and/or assistance is just uncomprehensable...
P.S. Adding to my frustration is the fact added, that my upcoming appointment with the Professor, who finally diagnosed that I have been suffering all the time from a "hernia at the incision of the kidney-transplant", I sadly must add, that this forthcoming appointment has sadly been cancelled and no other appointment has been offered, but, most frustratingly and very sadly, no explanation as to the "why" has been offered... ???
Talking about communications "talking place" between medics and patients ... ???
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Oh, Kristina, you've really been through the wars, and I am so sorry to hear about your latest affliction. I think it is the tacrolimus that can affect your hearing. In fact, I have developed tinnitus, and I am not sure if it is because of the tac or if it is because I am just getting older. I did speak to the transplant pharmacist about it, and she said that if it got worse to let them know. Well, some things you just have to live with, and as I am not sure there is anything to be done about it, and as I seem to not really notice it often, I've chosen to do nothing. That said, I am glad you will be speaking to your clinic about it. I am very curious to learn what they have to say and if they have any suggestions or might want to change your medication.
It must be very frustrating to have these problems pop up, problems that really (thankfully) have nothing to do with how your kidney is functioning. These "small" issues can add up to real misery.
I hope you can get your hernia op done more quickly, and I am hoping that the covid hospitalization rates will decrease enough in the UK so that your hospital can see to you.
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Oh no Kristina! I just don't understand this except, of course, the way covid is really trashing health care these days. I hope you can get some help soon. I would love to hear that you no longer from such ongoing pain. While I knew there can be a correlation between kidney disease and hearing loss, I did not know that hearing loss was associated with tacrolimus. My hearing has worsened the last few years and I have had hearing aids for a couple of years. Like so many assistive devices they are a poor second to the real thing. I don't think my hearing loss is related to tac though because I suspected for quite awhile that my hearing wasn't as it should be.
I hope you will soon have an appointment scheduled.
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I had not known about the hearing impairments that could come from tac, either, and I don't know what made me think to look at the patient information pamphlet, but yep, there it was.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/side-effects/drg-20068314#:~:text=Less%20common.%201%20Blurred%20vision.%202%20chest%20pain.,6%20ringing%20in%20the%20ears.%207%20sweating.
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Dear MooseMom and SooMK ... and ... many thanks for your kind answers and provided research-results about Tacrolimus. All the described possible Tacrolimus-side-effects look really terrifying !
I remember suffering at one time after "my" transplant very badly with swelling of my feet and lower legs and fortunately (touch wood !!!) that problem has meanwhile "faded away" into the background a bit, but the hearing problem is indeed very concerning, especially since I am very much "into music" and playing the pianoforte on "my good days" whenever possible.
Furthermore, the incision-hernia-pain at the lower abdomen has been really getting on for much too long by now and I am very frustrated about it, especially since it could have been diagnosed over the past two years and could therefore have been sorted out long ago, especially before these Covid-restrictions, since no operations are possible right now. Perhaps this is the reason for my exasperation, that it could have been so easily sorted out so long before ... :'(
I am very sad about your own hearing problems MooseMom with developing tinnitus, and the fact that you cannot be sure if it is because of the Tacrolimus or not and hopefully it can be sorted out and hopefully then it could perhaps be getting better? Do you experience the hearing-problem in a sort of constant way? I wonder, because with me it is particularly the Tenor-tones giving me problems, whereas I have no problem with Bass and Soprano-voices and my hearing-test proved, that I have no problem with the usual "getting older" hearing problems, because my only problems are when hearing Tenor-voices because of the certain "Pitch of the Tenor" if that makes sense?
Hello SooMK I also feel very sorry for your hearing-problems and perhaps they are also connected to Tacrolimus? Have you had a hearing-test? I mention this because I was reassured at my hearing-test that my difficulty is definitely not connected to age etc, but to my medication, because I only showed problems listening clearly to tenor-voices...
Many thanks again MooseMom and SooMK for sharing your experiences & thoughts, it is very much appreciated and I send you my best wishes from Kristina. :grouphug;
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Kristina Sorry you are experiencing these worrisome problems.
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As much good as it's done for most of us, the medical profession, for some of us, seems to have done an equal amount of harm. With your luck, Kristina, when they finally get around to the hernia, they may leave a sponge or some gauze in the wound, compounding all your problems with a massive infection.
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I am sorry to hear about your hearing now being affected, kristina. I agree, I think everyone is right about it being the Tac that is affecting your hearing. A lot of medications have side effects that affect our hearing and even our vision. I think I can relate a little. My own hearing seems to be affected by the Prednisone (steroid) I have to take for my breathing problems. Or it could be the oral chemo drug I take. And my vision has become blurrier. I say blurrier because I have allergies to pollens that also affect my eyes/vision.
I don't expect people to feel the same way I do about this but, when I think of how much these drugs are helping me (I think), then I try not to worry too much about the side effects. When I think of how serious my illness is and how much worse it could get, I guess I sort of dismiss some side effects as being tolerable compared to the worst happening or what I've already gone thru. I had a good talk with my doctor the other day. Well, it was a telehealth call but better than not getting to talk to him at all. Anyways, he said sometimes we have to weigh the benefits and risks of a drug and sometimes the benefits outweigh the risks. There are a lot of things I am struggling with these days that are fairly difficult to live with but I am trying to "keep my eye on the prize". My hope is to improve so that I may have a better quality of life. What that will look like I don't know but I am reaching for it. What helps is coming on here and being amongst other warriors if you will, that each have their own struggles, concerns and goals. You and other members here on ihd actually have helped with my own set of challenges. For that I am grateful.
Kristina, I hope you will continue staying on-top of your health issues like you do and pursuit of finding answers. Don't let doctors and medical staff dismiss you. But in the meantime, I hope things will improve for you or become tolerable. You had your transplant done over 2 years ago but I think really, living with a transplanted organ is still new to you. I would think it could take a few years or more before a new life with a new organ settles in. Transplants I think are a pretty big deal, I would think it takes a long time to adjust to even the fact that you were transplanted. How amazing that lives are saved with organ transplants! Lives! That's a big deal! And your life is a big deal. So I do hope that you continue as best as you can like you are doing and let us know how it goes. I don't know if your hearing will improve but we're here to help make it tolerable. Take care.
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Many thanks for your kind inputs, iolaire, enginist and PrimeTimer ... and perhaps there is some truth in what you are saying enginist, because since “my” kidney-transplant “things” definitely have not gone according to my hopes.
This I don’t understand, because my pre-dialysis days lasted over 43 years and of course it was not easy and of course, some nephrologists were very eager to take an “urgent” kidney-biopsy again in order to find out, why my “two little fighters” were still functioning.
But, except for one kidney-biopsy, which went very wrong and took place in the early 1970’s in order to diagnose “my” suffering from chronic proliferative Glomerulonephritis, I always refused another biopsy from then on in order to protect their function to last a little longer, because I was then medically advised to never ever have another kidney biopsy again.
But now, since “my” kidney- transplant “things” have gone “pear-shaped” ever since without me getting any break ... But I am not giving up hope yet and I still continue to hope, that some luck might come my way and I might finally have a chance to first of all finally recover from the transplant and then hopefully have a chance to carry on with less health-troubles ...
Many thanks again for your kind thoughts, it is very much appreciated. :grouphug;
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So much of pharmaceuticals seem to be about weighing the benefits vs harms. I believe that the benefits of my transplant drugs far outweigh the negatives. My own hearing loss I believe was a long time coming. I worked for years in the early days of transition to the computerized publishing industry. I was a typesetter using machines that punched holes in paper tape. This was a pretty loud environment and I do think my hearing was impacted at that time. I have an audiologist I see regularly. It could be a combination of my history plus the drugs. I am fortunate that my hearing aids work very well with my phone so I listen to music and take phone calls using them.
I don't think your post-transplant days have actually started yet because of this hernia pain. Something that should have been found quickly. I hope you will be feeling much better and able to do much more once that finally is addressed. I also hope there is some hope on the hearing front.
MooseMom that tac side effects list is so long it's frightening. It is so all inclusive that it almost seems useless. I feel vindicated that I blame every ache and pain and health weirdness on my meds. It's very convenient and since I can't do anything about it, I accept it. I have a friend who is a former nurse. She told me she never reads drug information that comes with prescriptions because she feels like she will then experience them.
Keep us updated Kristina. I really want you to be able to experience a better life post-transplant. I'm glad you are not giving up hope.
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SooMK, you're right that the possible side effects list for tac is stupidly long. I posted it only because it does specifically mention hearing disturbances. I honestly don't know when I noticed the tinnitus as it is one of those things that sort of creeps up on you. Tinnitus is so common in the general ageing population that in my case, it might not have anything to do with tac at all. I read the drug information forms because I want to know if there are really serious side effects I should be on the lookout for, but I never think that I could POSSIBLY fall prey to any of them! LOL.
One thing that those drug information pamphlets emphasize again and again is that the prescriber has determined that the benefits of said drug outweigh the possible side effects, so again, SooMK, you are absolutely right about that. And like you, I'll risk tinnitus if it means avoiding rejection.
Kristina, I know you have hernia pain, and I know you're experiencing hearing difficulties, all possibly due to the actual transplant operation and the meds. But on the flip side of the coin, how is your actual renal function? Is the kidney itself still working OK?
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Many thanks again SooMK and MooseMom and I shall try to find out as much as possible from the specialist(s) about my medication and its possible “influence” on my hearing-abilities etc. and what can be done about it, plus possible chances for a hernia-repair-operation a.s.a.p. etc.
Fortunately I don’t need a hearing-aid yet, possibly because my hearing was originally very good and my hope is that because of this the deterioration might take a bit longer ...
I just feel a bit hard-done-by because I was not really prepared, to find out, as a devastating experience, how easily and sadly “things” can go wrong after a kidney-transplant and I firmly believed originally, that if I do my very best it should go a long way, as it did during “my” dialysis-days. But unfortunately in this case I was wrong, because, in “my case” it turns out that after a kidney-transplant one needs much more medical help than originally thought and just trying one’s very best as a patient is not good enough and if some medical help is not forthcoming, things easily can go “pear-shaped" ...
To answer the question about my kidney-function ... I am not quite sure about it myself, because it was very poor from the very start. But with my “mollycoddling care and attention” it developed in a positive direction and began to show better readings. But unfortunately it stopped developing into further better readings, when this hernia-pain became so overriding, whilst at the same time I felt devastated because I felt that I was left “dangling” on my own with this problem. At first (two years ago) the pain started as a nuisance but then it began to develop into a “very loud” and terrible pain, which necessitates pain-killers I have to take now all the time and this experience has so far been very devastating and extremely demoralising...
... But nevertheless ... my very old “new” kidney still just about tries its best to “hang on”... just like myself ... :grouphug;
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Yes Kristina, please hang on. Until this hernia is fixed and you can get past the pain killers, your new kidney isn't getting a fair shot. I'm embarrassed to ask this question, since it seems like I should know this, but: Where in the world are you? Your clinic experience seems quite different from my own. Your routine labs show your kidney function, so this should be straightforward?
Hope you see some progress soon.
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Kristina, it pains me greatly that you are feeling any sort of regret about your kidney transplant.
It may help you to know that your hernia is not necessarily specific to kidney transplant. It can happen with any sort of major abdominal surgery. You just got very unlucky, the worst part being that it took so long to find and will take even longer to repair because of covid.
As for the possibility of the tac causing hearing problems, that's definitely something that you MUST discuss with your hearing specialist and your transplant team. Most side effects from the meds are minor, and we learn to deal with them. But if a certain side effect is really affecting your quality of life, please say so, and I would think your medication could be changed. I have not done a ton of research into this topic, but what I have read (in the instance of a liver transplant patient) suggests that hearing is restored after discontinuing tacrolimus.
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1432-2277.2006.00317.x#:~:text=Neurological%20and%20sensorineural%20side%20effects%20from%20tacrolimus%20(TAC),Acute%20onset%20of%20hearing%20loss%20is%20seldom%20reported.
Please don't feel downhearted just yet. There is hope as long as your kidney function is keeping you off dialysis. I don't want to dismiss your other problems as "minor" because they are clearly causing you distress, but I feel they are fixable...eventually.
Take care, Kristina.
Maybe you could use the link above as a starting off point for your own research.
I am now wondering if I should also speak to my doctor and arrange a hearing test to see if tac is affecting my hearing of if I'm just getting old. What with covid and all, I am not keen on any new doctor's visiits, and I have yet to decide if the constant ringing in my ears is worth a medication change; I don't want to take that sort of risk at this time. I'll have to think about it.
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Many thanks SooMK and MooseMom for your kind thoughts and encouragements ... and SooMK, to answer your question, I am in London and my transplant should have been – theoretically – straightforward from the start – but unfortunately, as you can "see", it was not and two years after the “event” I am still hoping and struggling and still trying ... and MooseMom, many thanks for providing the link and perhaps this Tacrolimus “has lots to answer for” and hopefully there is another way forward with perhaps another medication? Mind you, at the moment I feel a little “insecure” after all these negative experiences with the clinic and I have noticed, that my negative experiences during the last two years have succeeded in making me feel a little uncertain and unsure and hopefully I have a chance to be "my old self" again soon. But at the moment I almost feel that if I try to receive some medical help at this clinic I might walk “from the rain straight into the waterfalls” ... so to speak ...
Many thanks again from Kristina. :grouphug;
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I can certainly understand why you are feeling like you might want to avoid all doctors and clinics at the moment! You've had some unfortunate experiences, and covid doesn't make it all any easier! Maybe it's just as well; you can take some time and decide what you might want to do next. :cuddle;
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Dear MooseMom,
Many thanks again for your kind thoughts. After our last night’s exchange of thoughts I woke up this morning with the decision to go to “my” next medial appointment at the transplant-clinic to see the transplant-medics and I shall tell them exactly how I feel about their lack of health-care over the past two years and what it has done to me physically (constant pain & not recovering yet from the transplant-operation etc.) and mentally - and hopefully they give me an idea what this was/is all about and what they think and say about it.
I shall also lodge an official complaint to my health-authority etc. about the lack of health-care I have experienced since my kidney-transplant over two years ago and I shall ask them to please investigate ...
Many thanks again from Kristina. :grouphug;
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Good for you. They are not going to know how much you've suffered unless you tell them!
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... I saw one of the surgeons and informed him of my continuous chronic pain and a resulting inability to do anything at all This leaves me being constantly “parked” on the sofa without a chance to play the piano, without a chance to paint, without any chance to ever have another exhibition of my work etc. and/or go out for a walk etc. Unfortunately, the surgeon didn’t seem to be overly bothered but informed me that he disagrees with the former diagnosis of a hernia and, having looked at the CT-scan he thought that either the transplant-operation-scar did not heal-up properly over the past two years and therefore etc. ... and/or a nerve has been trapped etc. ... and/or some nerve-damage took place during the transplant-operation, causing me to suffer from chronic pain from then on.
Unfortunately there were no positive suggestions made as how to proceed, but it was pointed out that because of Covid etc. etc. etc. etc. and because of that etc. etc. etc., he suggested that I could take from now on some nerve-drowsing-pain-killers which are usually given to epileptic patients. But since I do not suffer from epilepsy at all, my mind goes dizzy about what is going on and/or possible side-effects of a medication which is not for me in any case and I wonder how appropriate and helpful his suggestion could be ? ...
I also wondered what ... apart from possible side-effects to my mind - such a “medication” would do to my fragile transplanted kidney? I told him that my alertness and logical thinking are hopefully still good assets and my mind surely does not need to be drowsed-down and sedated because of a chronic pain which could have been sorted out ages ago ... By now the “discussion” was becoming a bit louder and I also mentioned in the following heated “discussion” that I deeply regret to have been talked into such a terrible kidney-transplant-experience.
The hospital-transplant-“sales-team” were ever so good to “sell” me the idea of a kidney transplant at their transplant-discussion-“seminars”, to which I was invited three times. Unfortunately these "seminars" took only place in order to go ahead with transplants, whereas the fact that I have been left on my own without any positive or helpful medical assistance for either the pain or how to go from here and, as a result I have been left 24/7 in constant unbearable pain. This emotional outbreak of a very disappointed patient (myself) did not touch him and I felt very strongly, that he could not care less. After all: his career is satisfactorily established and shame about some unsatisfied left-over-patients like myself who “got lost” on the kidney-transplant- conveyor-belt....
I might go ahead with one more meeting in the hope to finally receive some medical help from this so-called “Transplant-Centre-Of-Excellence”, but if the next meeting continues to go without any medical assistance/help offer, I shall have to re-think very deeply about what to do next ...after all : this has been going on for over two years now, I feel exhausted and I did not “go” for a transplant in order to lead from then on a life of total misery. I find it all very sad and extremely disappointing, especially since I trusted them and I feel it makes a mockery of my years of trying so hard at University plus my continuous studies at the British Museum Library plus the many exhibitions with my work, plus my poetry plus my piano playing, plus etc.
One terrible realisation for someone like myself is the fact that the kidney transplant-centre only consists of : kidney-transplanted patients sitting motionless, where no one talks, then there is a registration-desk to “book in”, then there are some nurses to take one’s blood, one’s weight and blood-pressure and finally, at the end of the conveyor-belt there are the doctors.
Unfortunately, if a patient is distressed about “things” not going right, , there is no one to talk to. There is no transplant-coordinator who could possibly assist about how to go from here.. There is not one person in the whole centre where a distressed patient like myself could talk to and receive some help to sort this mess out and there is no one to perhaps get some feed-back or some assistance or some help, there is no social-worker one could talk to, there is in fact nothing... whereas BEFORE “my” transplant took place, everything was in place to “lure” the desperate ESRF-patient unto the waiting-list ... Of course, the transplant doctor told me that without a transplant I could be dead by now and in my disappointment I answered that at least I could have died in dignity whereas right now I “drag on” in constant pain as if that could possibly be a life ... To say that I am completely depressed and disappointed right now would be an understatement ...
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Oh kristina, I'm just baffled by the lack of post-tx care! I just don't get it. I mean, really, the surgery is the "easy" part; kidney transplants are done every day. It's the after care that can be complicated because every patient is presented with a vast array of drugs and lifelong tests and vigilance. KEEPING a new kidney healthy for years and years is the tough part. This is why I just don't understand why the NHS doesn't seem to have transplant coordinators and/or a support/aftercare system.
If it were me, I don't think I'd go for the anti-epilepsy drugs as I've heard they are really unpleasant. I'd certainly get a second opinion about that.
How easy would it be to sort of start all over and find another medical team to help you? Can your GP refer you to someplace else because as it stands, this surgeon doesn't seem to either know or care what it is exactly that is causing your pain. Surely you'd have to have that bit of information before the pain can be treated!
Yes, DO go with the next meeting and outline your concerns. Your current situation is unacceptable.
I am so sorry.
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Oh no. I'm so sorry. I echo what MooseMom said. It sounds like you need an advocate. In normal times you could bring someone with you. Many times just the presence of another person can make a difference. Not too likely in the middle of a pandemic though. Have you tried talking to your transplant coordinator? Even though it doesn't seem like it from your position, transplants are very precious and a life changer (in a positive way) for most people. If one doctor says it's one thing and another doctor says it's something else, it seems like another opinion is called for. I agree that putting you on some drug without knowing what the actual problem is doesn't seem like a solution unless it was meant as temporary to help you until a real solution can be found. I would hate to see you give up as your quality of life is on the line.
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Very sorry to read of your continued run-around situation, kristina. It sounds truly awful and your frustration is apparent!
But, I do have one question: do you still see your transplant surgeon (I know that you mention surgeon but I want to be clear) or do you see a transplant nephrologist? As in, a nephrologist that specializes in post-transplant care.
The reason I ask this is because I still see my surgeon for my transplant needs. I do not have a transplant nephrologist. They have a similar attitude to the doctor that you see: often concerns raised get dismissed and I have to answer their direct question, "Well your quality of life is better, right?" And if I reply with something not 100% on target, I have to sit there and fill out YET ANOTHER quality of life score, like I'm depressed, when I'm not... I just have a problem.
The way it was described to me by another doctor is that clinicians are more focused on continued long-term patient care and surgeons have their narrow focus of patient alive/patient numbers look good/nothing really left to consider. Hence, a more nonchalant attitude to patient concerns. Like you say, their job is done. Those that have had a single kidney transplant are followed by nephrologists and from the outside looking in (from my perspective) they receive a whole lot more holistic and centered care.
Nothing truly helpful, but it might be worth a thought.
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I don't know how it works over there, but it's clear to us over here that you are getting thoroughly worked over. Indifference is the primary problem, which may be due to the exodus of doctors and nurses caused by Brexit, compounded by the problems from the virus. You'll probably need both luck and persistence to find a sympathetic soul in a system that has failed you so far.
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Hi Kristina, I’m so sorry what’s happening at your end. Have you tried through the GP to get at least a social worker?
Love, Cas
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Hello again and many thanks for all your kind replies and your helpful thoughts and suggestions, it helped me a lot to feel less isolated with this medical problem.
I saw another surgeon and he confirmed the first diagnosis & explanation for the pain and this consultation was much more positive and forward-thinking. But unfortunately, the current covid-restrictions are not in my favour and these restrictions do not help my situation at all because, as I was told, there are no operations taking place at all, unless the patient is in a life-threatening condition and no transplants take place either right now.
I was also told, that my desperate medical situation is known but nothing can be done right now because of covid-restrictions and that all I can do for the time being, is to "carry on" taking pain-killers, whenever most necessary, but that I should be very careful and keep them to an absolute minimum ... and finally I was told that I have to wait until the covid-restrictions are being lifted and the current operation-waiting-list can be approached again.
This consultation made me feel a little more re-assured about my situation, because at least I was given all the facts and the truth and that hopefully helps me to deal with the situation in a better and more constructive way, since at least I know where I stand right now with my medical problem and the resulting pain. This consultation also made me realise that of course, my medical problem, which was created by accident during my transplant-operation, is very bad and very painful for me, but at least I now know that there are no operations taking place at all and I was also told that with such a compromised immune-system like mine after my kidney- transplant, I would not have much of a chance if I came across one of the covid-patients who currently fill-up every hospital here "to the brim". Unfortunately nothing can be changed for the better at the moment and I just have to wait for my medical situation to be sorted out in an operation ... eventually ...
Many thanks again for your kind thoughts and suggestions from Kristina. :grouphug;
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So many causes for your pain have been presented by your doctors/surgeons! Possible UTI, a poorly healed scar, nerve damage resulting from the surgery, and then a hernia. Since you've mentioned an operation (that can't be performed now because of covid restrictions), I am assuming that the final diagnosis is a hernia? Is that right?
I am sorry that you've been caught up in the whole "I can't have this done because of covid" dilemma like so many other people! I would be really worried about you if you had the surgery right now, but I'm not the one who is suffering.
Are you finding any medication that is helping? Is paracetamol enough since NSAIDs shouldn't be taken by tx patients? Are you getting any advice at all from your doctors for what to do about the pain (besides epilepsy drugs)?
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Oh thank goodness that you finally had a decent medical appointment in that you went forward, rather than fall behind! But, yes, indeed, the corona restrictions really do muck up real resolution for your pain. You have to hold on!
Have you a follow-up with this particular doctor that takes your case more seriously? I mention this only because it is good to retain connections with one that recognizes the hernia, supports the diagnosis of the other, and can ensure you will move forward.
If the medication that the previous doctor prescribed is Gabapentin, I would avoid it, not simply because it is known as "epilepsy" medication in its past life, but rather it causes much too much drowsiness than nerve pain resolution. (At least in my experience.)
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Many thanks again MooseMom and Ukrainian Tracksuit for your kind thoughts and suggestions. :grouphug;
Unfortunately, the reason for the pain cannot be “sorted out” by operation right now and I have to continue to be patient and have to wait.
... and MooseMom, unfortunately I was not given any definite answers as such, but the reason for the pain and discomfort is, so I have been told, connected to the transplant-operation and I have seen the ct-scan which shows that some tissue is “broken” and a "gap" within the tissue can be seen and it needs to be operatively "sewn together" so to speak ... and it is true, the first diagnosis was a hernia, then a severed nerve, then a severed muscle, and etc. ... but to me it is not that important however it may be called, as long as the surgeon hopefully knows precisely what he/she is doing when repairing "it" and, as you can imagine, I am already a bit nervous about it all, because the transplant-operation has already left me with chronic pain and now I wonder, how can I truly hope that this next operation (whenever it might take place) is going to be alright?
... I have also asked at this appointment about the Epilepsy-painkiller-drugs and was advised not to touch any of it but to carry on taking Paracetamol whenever needed, within reason ... and to make sure not to "overdo" it. Fortunately Paracetamol is still “good enough” for me, because I have always been extremely careful about taking any pain-killers at all and because of that I don't need to take too much right now, as it has a powerful impact and certainly is "good enough" for the pain... and hopefully the lock-down is lifted soon, so that urgent operations can be "done" again.
I also have another blood-test soon and later on another appointment with this very kind, thoughtful, assuring and helpful medic and he has already assured me that my pain and medical problems are not being "forgotten and left aside", so to speak.
Many thanks again Ukrainian Tracksuit for mentioning Gabapentin, which is called Pregabalin here and I was told not to touch any of it and just keep with Paracetamol in order to safeguard my kidney.
Many thanks again MooseMom and Ukrainian Tracksuit for your kind thoughts and suggestions, it is very much appreciated. :grouphug;
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So sorry you are going through this, Kristina! Pain does all kinds of bad things to us...for one thing, it causes us to lose sleep. It becomes very hard to heal from anything without proper sleep. Apparently certain cells in our bodies are replaced and/or repaired daily but only once we have reached REM (deep) sleep. I was once given a pain pill when I had a bad case of bronchitis. I didn't ask for it so asked the doctor why he was prescribing a pain pill. He said it was because I was coughing and choking so much and he wanted me to sleep and get rest so that my other prescription medicine could do it's work without my body fighting so much. Plus, I was very sore and achy from all the coughing and choking. I really don't do so well on narcotics because I am very sensitive to them but I listened to the doctor and glad I did. I got some rest and got better. I wish they could fix you up sooner but until then I hope you are able to get some rest and avoid too much pain. I am sure it is not easy. I'll be thinking of you. Take care!
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Many thanks PrimeTimer for sharing your experiences. I feel very sorry that you had to go through this and I do hope you can sleep and rest better now and hopefully your covid-vaccination has been sorted out as well?
Your observation is certainly "spot on", because sleep does not come easy when suffering from chronic pain and to think in a logical way becomes even more difficult after a sleepless night, because the pain certainly seems to “rule” everything and the pain itself also seems to cause enormous stress, which certainly has developed into another serious medical concern in my case...
Because of the constant discomfort, pain and resulting stress I don't think I had a chance to heal properly from "my" kidney-transplant two years ago and I also have become run-down in a big way which also comes from a lack of sleep and all that pain which causes constant stress as a sad "by-product". Unfortunately I am only able to sleep for a very short time and it does not feel as if I have reached any relaxation of deep sleep at all because I wake up much too often during the night ... or day...
Many thanks for pointing this out and I shall ask the doctors about this a.s.a.p.
I shall also make a point of taking a Paracetamol last thing in the evening and hopefully it may help me a bit.
I thank you again for your kind thoughts and helpful suggestion and take great care and best wishes from Kristina. :grouphug;
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Kristina, the most important thing to know about good pain management is to not let that pain "take hold". Treat it before it gets its claws into you. Consider taking the paracetamol as directed whether you feel pain or not. Take it every 4-6 hours (or whatever the patient information on the box says) even if you are pain free. This makes an enormous difference in my experience, and hopefully it will do the same for you.
Take care!
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Dear MooseMom, many thanks for your kind thoughts about good pain management which is very helpful and very much appreciated.
I am still in the process of “getting to grips” with it all, but I can already notice that it helps.
I thank you again for sharing your experiences and thoughts, it is very much appreciated. Of course, I still have to remain patient during this pandemic about having my urgent repair-operation done, but with good pain management the waiting becomes at least "somehow" bearable.
Many thanks again and take great care & best wishes from Kristina. :grouphug;
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As much good as it's done for most of us, the medical profession, for some of us, seems to have done an equal amount of harm. With your luck, Kristina, when they finally get around to the hernia, they may leave a sponge or some gauze in the wound, compounding all your problems with a massive infection.
Hello enginist and thanks for mentioning it ... and to be honest ... at the moment I can hardly think of anything else ...
... and ... adding to that ... I am getting extremely concerned about my future-survival ... especially since there are only two possible outcomes left : the first outcome could hopefully be, that "they" really feel sorry for their past medical mistakes and want to make sure, that from now on everything goes in my favour and the operation is going to be a success ...
... but the second possibility could be ... that all humanitarian respect & humanitarian compassion towards patients has been lost already and "they" couldn't be bothered any more ...
... nevertheless, as a "chronic optimist" I still keep hoping for the best ... :grouphug;
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... It really does not seem as if there is any hope to sort this out - and, to be honest, after two and a half years of waiting for this chronic pain to be sorted out through a repair-operation after a kidney-transplant-mess-up, for which I have now been put on the "waiting list" for the operation, whilst being left with chronic pain after a kidney-transplant-operation-gone-wrong at the end of 2018 ... that seems to be it ... and I am now getting completely and utterly exhausted from the waiting for medical help and the pain ... and ... I might even be on my way to finally "loose it", so to speak...
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Kristina sorry.
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Kristina, I am so sorry about all this and the fact that you're not getting the care you need. This is awful! But please don't give up with trying to get someone's attention. Surely someone in their medical system can help you to get the surgery sooner. Maybe now with fewer Covid cases their time will be freed up. Keep making noise!
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Kristina, I know that it feels really awful and hopeless right now. So many hospitals have a backlog of surgeries so you have my utmost sympathies! Have you rang the surgeon in charge of your case (the one that finally gave the opinion that it is indeed a hernia) and asked what is the state of operations right now? I have heard that the UK is slowly starting to open up again, so it might be wise to ask or find out how that it is progressing in hospitals.
You have fought for so long. It may not not feel as though you have another battle left, but I believe that you do.
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Kristina: I am wondering if you could ask your doctor if a TENS unit might help your pain. At least to act as a distraction from the pain while you wait to have surgery?
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Many thanks for your kind thoughts, Iolaire, PrimeTimer, UkrainianTracksuit and PrimeTimer, I very much appreciate your kind ideas and suggestions and I shall follow-up every suggestion.
... Perhaps I should have mentioned before, that over the past few years, especially over the past six years, when he wished to donate one of his kidneys to me, my husband was, through his donation-work-up diagnosed with bladder-cancer plus later on prostate-cancer as well and he had to undergo operations plus all the treatments etc., and, instead of being able to fully assist him and look after him, I have been left in constant pain, on painkillers 24/7 and "parked" on the sofa, unable to help ... and everything has been a terrible struggle for both of us...
Because of all these experiences it has come as an ultimate disappointment, when I was told, that after two and a half years already in pain because of this untreated operation-incision-hernia, plus further medical problems with two narrowing "kinks" in the renal artery, of which only one has been repaired during three operation-attempts ... that despite my waiting for two and a half years for medical help, I was informed, that I have now been put on the waiting-list, as if I have not been waiting for the operation for such a long time already....
I have also felt more and more very depressed and aggrieved about this situation, because through our battles to keep my husband alive, we only had each other and in "my" transplant-centre I have mostly experienced aggravation, ignorance, no understanding and not even a kind, understanding word ... and it all has been building up over two and a half years time and by now it has become almost too much to bear, so much so, that to me, a formerly most positive and forward-looking-person, the thought of giving-up has already crossed my mind ...
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Kristina, it is already apparent that you most likely will never receive that "kind word" of understanding from your medical team, and while I am really sorry about that, it is time to seek solace elsewhere, and that is here.
This may sound trite and gooey, but IHD is, after all, a "support group". We cannot provide the medical help you need, but we can provide many kind words.
I've always found it important to stich together my own support quilt. I get one kind of support from my clinic, I get another kind of support from groups like this, and I get yet another kind of support from my friends and family. From my clinic, I expect medical and professional support. From groups like IHD, I get that support that comes with conversing with others who are in the same boat and who KNOW what it is like. From my friends and family, well, they might not know their potassium from their phosphorous, but they don't have to because they love me and don't need to get "into the weeds".
I think it may be time to stop expecting emotional support or understanding from your medical team. Clearly, they are not able to provide this, and to keep hoping for it is to cause you more distress. Focus your energy into pressing them to give you the earliest time slot possible for your surgery.
You and your husband are clearly a match made in heaven, and while your husband's health concerns are extremely stressful, I know that he is the perfect person from whom you can rely on the utmost emotional support and understanding.
I am thinking that, as Prime Timer suggested, it may be time to find a better way to manage your pain whilst you are awaiting surgery. I hope you don't mind, but I happened to mention your situation to my husband yesterday, and he wondered if perhaps hypnotherapy might help. I know that may sound a little "out there", but I've read that it does in fact help some people as part of an integrated strategy.
It seems to me that your pain is the most pressing issue at the moment. Something has to be done to manage or relieve this pain. Have you spoken to your GP about specific treatments or ways to manage it? I'm surprised you can function as well as you do. Chronic pain, no matter the cause, is a real problem for many people. It is draining and enervating and must be dealt with.
I am also concerned about your mental/psychological health. Dealing with pain is one thing, but dealing with these feelings of hopelessness, depression, and anger is the other half of the battle before you. Not knowing for how long you're going to have to live this way must be emotionally damaging. The mental and emotional health of patients like yourself is all too often ignored. Perhaps you can have a word with your GP about this, too. What do you think?
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Dear MooseMom and thanks for your kind thoughts. Your letter made me re-think, because, what I really tried to convey is that I miss the humanitarian touch of culture and refinement, which always shows itself in little gestures and a kind word now and again, as was experienced “in the old days”, when medicine meant a little more than just “a job” and most medics were noticeable by their culture and class, which in return had a good influence on vulnerable patients, as it enhanced their trust and believe to quickly recover and get better...
As a creative dreamer in art, painting and music, it is - honestly speaking - very difficult & almost frightening for me to meet some of the medics ... and some encounters came over as being very frightening, because, since I suffer from very difficult to understand genetically inherited diseases i.e. SLE/MCTD plus variations, plus medical problems with the kidney-transplant, this difficult combination seems to require clever medical thinking and intelligent medical combining-skills etc., especially since the incision-hernia-pain continually induces further SLE/MCTD-flare-ups ... and so, as you can see, I have been "going in circles" as a result for the past two and a half years ...
... To help me with pain-management, I have tried hypnosis at different times in my life, but unfortunately I was assured every time, that I am one of those unfortunate rare cases who cannot be hypnotised, because it seems, that my (subconscious?) mind & instinct are strongly against such a procedure and so, unfortunately it does not work for me as a pain-management ... Because of this problem I had an idea and wrote to the Ministry of Defence about their pain-management-training for their own "special cases" etc., but unfortunately they have never answered my letters. It is really sad that “they” cannot assist medics to train chronically sick patients in chronic pain to withstand pain through special programmes etc.
Of course, “my” constant pain is very difficult to take for such a non-ending-long time, and unfortunately it seems to be happening at the wrong time as well and whilst it took such a very long time to be diagnosed it makes me feel frightened and totally lost, especially since this enduring pain has been going on for over two and half years ... :grouphug;
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... Today my kidney-transplant-hernia-repair-operation should have finally taken place, but unfortunately it has been cancelled by the NHS-Management of "my" district. Unfortunately, they are not medical, but only managerial, and therefore they could not bother about my welfare or the fact, that I have been left in chronic unbearable pain since "my" kidney transplant took place in November 2018. In the UK, hospitals are unfortunately not “run” and/or managed any longer by doctors who are medically trained enough to evaluate the urgency of certain operations, but hospitals in the UK are these days “run” by managerial people , who have no connection or any idea, how to evaluate a kidney-transplant-gone-wrong, which has left me in unbearable pain since the transplant took place in November 2018.
As a patient in urgent need of this operation, I honestly have no idea how to go from here because my GP/doctor/specialist have no powers to go forward and help or assist me by urgently repairing and operating this painful transplant-incision-hernia, which has made my life a total misery since November 2018. I regret very much, that I was naive enough to have welcomed the idea of going ahead with this kidney-transplant in November 2018, because, apart from this total misery and total despair it has brought me nothing at all. A life spent in despair and total misery after a kidney transplant is not worth much, is it? :grouphug;
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Sorry kristina. Is it a permanent denial/cancelation? Did they give reasons?
Here in the US insurance companies have the power to not approve procedures but there is an appeal process, and when all that fails other than lawsuits the last backup is to try to get media coverage from some sort of consumer advocate or medical reporter intreated in the case. Medical systems behaving badly can make good news because most people can identify with the story.
This site lists BBC medical reporters:
https://en.wikipedia.org/wiki/List_of_BBC_newsreaders_and_reporters
if you look at one of their stories, for example this one by Fergus Walsh you might see some sort of contact info, in this case a twitter handle
https://www.bbc.com/news/health-55308216
A pointed tweet tagging the report and NHS might peak someone's interest, for example:
@BBCFergusWalshon @NHSuk botched my kidney transplant surgery 3 years ago leaving me in unbearable pain - NHS-Management cancelled surgery to try to fix it over my specialist's recommendation.
You could then say daily move to the next reporter/editor with similar messages each time tagging @NHSuk hoping that either NHS or a report gets interested in your case. And you could move on to other publications as well using a similar method.
The https://twitter.com/NHSuk says "Official site of the English NHS. Monitored weekdays 9am - 5:30pm".
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Will the surgery be rescheduled? What happened? I know that covid is making a comeback in the UK; is this the reason your surgery was cancelled? I don't understand. I am so sorry.
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Many thanks Iolaire for your kind ideas and many thanks MooseMom for your kind thoughts ...
Unfortunately I was not given an explanation as to why my urgent transplant-repair-operation was cancelled and unfortunately I was also not given another date for my urgently needed repair-operation either.
The fact that "they" did not explain or help so far. is perhaps due to the fact, that it is a specialist hospital, very strongly renowned for their very strong research-connections? ... and perhaps ... that may be the reason, why my complaints about this chronic pain, and my having problems to sleep at nights because of the pain which almost makes me housebound, were so long ignored by these transplant-researchers ? Also, the fact, that the pain causes a chain-reaction with many SLE/MCTD flare-ups was unfortunately also ignored...
Perhaps "they" also may be a bit over-challenged, not only because of Covid, but also because currently the whole set-up at the transplant-clinic almost appears like a huge transplant-factory plus its 3-monthly conveyor-belt-after-transplant-blood-result-research-centre?
Why I am writing now like this is possibly the result of my utmost frustration and constant pain plus being totally exhausted after all these sleepless nights for the past two and a half years - and therefore my thoughts may come over as a bit totally exhausted, and perhaps even a bit unkind, but I dare-say, being condemned to two and a half years of total misery, chronic pain plus being almost housebound, is extremely disappointing, especially since such an after-transplant medical let-down was not mentioned before the transplant, when at all transplant-seminars I was literally “sold” the idea, that, having a kidney transplant would change my life and future for the better. My husband and I have been to these Transplant-Seminars before the “transplant-event” and we were promised, that our life would instantly get better after my kidney-transplant and so we were “sold” this idea in a big way and now, two and a half years later, I am worse off, than I ever was during “my” pre-dialysis years and "my" dialysis-years...
As a result of this terrible horrific medical let-down and understandable resulting frustration, I have right now, today, written many pleading letters, asking for urgent help in this terrible dilemma and hopefully there might, hopefully in the not too distant future, be some light at the end of the tunnel...
Many thanks again from Kristina. :grouphug;
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Hi kristina,
I truly hate reading such distressed messages from you but your feelings are totally legitimate under the circumstances. Life with chronic, severe pain is bad enough and it is mentally exhausting when procedure to rectify the issue seems so out of reach at this point.
I hope that you are contacted soon for a rescheduled date for your hernia repair surgery. Perhaps the one sliver of light (at least the case here) that procedures that were cancelled due to covid are rescheduled first in the pecking order. I hope the same applies there. As well, the state of your health should be a consideration so that you receive priority.
Please take and keep us updated.
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I am so sorry, Kristina. Chronic pain like what you are experiencing is truly soul destroying and warps every aspect of life. I am guessing that paracetamol is not helping as much as you'd like?
No wonder you are so distressed to the point that you regret your transplant surgery. Your life SHOULD be so much better. I regret your surgeon was so incompetent.
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I'm so sorry to read this Kristina. It sounds like you are in a nightmare and nothing you do seems to get you out of it.
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Dear UkrainianTracksuit, MooseMom and SooMK, and many thanks for your kind compassion, understanding and sympathy. It is true, that I have been going through a long lasting permanent nightmare, which is made worse since my husband also goes through a similar nightmare with his cancer-battle and it also makes me feel very bad, that I cannot assist him much or look after him as much as he needs to be looked after. This weighs very heavily on me as well, especially since he was always on my side at all times, not only practically by looking after me, but also by his kind encouragement through my dialysis-years. But hopefully, there might be a little light "flickering a little bit" at the end of the tunnel, especially since I have been put on top of the waiting-list. Please keep your fingers crossed for us a little longer.
Many thanks again from Kristina. :grouphug;
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At the top of the waitlist?! That IS a flicker of hope! I'm very pleased to hear this!
I know your husband understands that you would move heaven and earth for him if you were able to. He sees your daily struggles and loves you enough to not have unreasonable expectations of you. I'm just so sorry that you've both been subject to such terrible timing, that both of you need swift medical attention during a pandemic. :cuddle;
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Dear MooseMom ... unfortunately right now I have start from the very beginning again ... as if I had not already been waiting for over two and a half years ... It is very devastating and extremely demoralising to find oneself in a situation, when one is forced to rely on the integrity of doctors ... and finds nothing but empty words and nothing else ... :'(
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Hi kristina,
I am not trying to be nosey, but what do you mean that you have to start from the beginning again? Are your medical imaging from the diagnosis from the hernia lost or you need to redo them? Are there more appointments?
What a shame and I hope it is just a misunderstanding on the medical side of things.
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Hi Ukrainian Tracksuit and thanks for asking & I am sorry that I could not answer earlier...
The reason for my need to start again “from the beginning” is, because of my referral to a different hospital to get this - meanwhile legendary - transplant-incision-hernia “operated away” and repaired and my hope is, that in the future I might be given a better chance for a quality of life with the medical help in the new hospital ... Of course it is a very sad fact that I have wasted over two and a half years after my kidney-transplant-operation, waiting for medical help in such misery and pain. After all, a kidney-transplant lasts “usually” around ten years and it is so sad, that I have wasted already two and a half years already ... but ... I am very glad about my referral to another hospital and, to be honest, I would have asked for the referral a long time ago ... but, because of – for me - a very good anti-rejection-medication received at “my” original transplant-hospital, I felt obliged to remain there, being loyal, but I am now - medically speaking - in such a "derelict" state of pain and misery, that I couldn’t care less any longer and don’t mind to start anew again at another hospital with hopefully better luck coming my way ... :grouphug;
Please keep your fingers crossed for a little longer and I send you and your husband my kind regards again from Kristina.
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Hus! Hang in there. Everything will be okay.
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Trust that everything's gonna be okay and that these all happens for a reason. Life is good if you choose to look at it that way..
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Many thanks Frugallyzing and Hereware for your friendly and encouraging thoughts, it is very much appreciated.
... At the moment I am in the process of recovering from a terrible Sepsis, which instantly made my kidney-function deteriorate and it also affected my heart in a bad way and left me with a terrible pressure in my chest-region at the time. But I was very fortunate when the Ambulance-Paramedics brought me instantly to the nearest Accident & Emergency-Hospital, not only because of my high temperature (at its worst it was 39.9), but also because of the deterioration of my transplanted kidney-function and fortunately I instantly received the very best medical care possible from then on. Because I was so fragile, I was kept in an isolated room and the doctors were extremely knowledgeable and attentive, the nurses did their very best and my medical care was conducted in a very professional and encouraging way and the medics at this A&E Hospital were also in contact with my Transplant-Hospital as well. It all went very well for me, there was no unnecessary excitement, I was kept as calm and as well as is possible and this wonderful experience did a lot to restore my faith not only in medicine, but also in the medical care of doctors and all of the medical staff were excellent. This experience was so good, that it practically overshadowed all the bad feelings about former unfortunate medical experiences before etc. Even the “hernia-pain” was attended to and turned out not to be a hernia at all, but an unfortunate side-effect of the kidney-transplant, which fortunately has finally started to subside right now and this makes me feel very much better, because there is no pain anymore.
All in all, I am happy to report this very good news and even though I am still on heavy Antibiotics right now ... and it might take time to recover from the Sepsis, I certainly can see the light at the end of the tunnel…
Please stay well and I send you all my best wishes from Kristina. :grouphug;
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Oh my goodness, kristina!
What an update! :o
Firstly, and most importantly, I hope that your recovery from this awful sepsis is smooth. Wishing and hoping (I know that sounds so useless) that the heavy antibiotics do their job. Sepsis is nothing to sneeze at.
What is the status of your kidney now? Recovered? Tell us when you can!
Still, I am so very pleased to hear that you experienced top-notch positive medical care! It must have been caring and wonderful to change your opinion and restore your faith in it all! That's excellent.
As well - and this is a big one - I am so glad that your "hernia pain that is not a hernia" has been resolved! You can begin to have a better quality of life once you are all settled from this awful sepsis. Do you know what the actual cause was - this particular side effect? No more waiting for a surgical date, especially for an unneeded procedure!
Take care and get better real soon!
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I’m glad the infection has some positive outcomes Kristina.
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Oh, gosh, Kristina. Sepsis is so frightening and dangerous and more common than most people realize.
I am so relieved that not only did you recover but that also the care you received has restored your faith in doctors. I know you've had a really tough time with your transplant team and others who have overseen your care. What a scary way to get a second opinion about your "hernia"! I'm just astonished by this story.
So, what's next? Rest and recovery and a follow up appointment, perhaps? Like UT, I'm wondering what exactly the "side effect" from your transplant actually is? This is such a mystery!
Thank God you're better! What a relief! Thank you for letting us know.
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Whoa! It's an ill wind that blows no good, I guess. What a strange twist to your story. Wishing you the best going forward. Please keep us updated.
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Dear Ukrainian Tracksuit, Iolaire, MooseMom and SooMK and many thanks for your kind thoughts and understanding.
Sepsis is surely a very frightening and life-dangerous experience and before that I had no idea about it whatsoever.
The cause of “my” Sepsis is unknown and it was only when my quickly high-raising temperature showed up, that my life was noticeably getting in some danger, especially since my kidney function became detectibly “lazy” and as a result of that I put on weight, because of a noticeable water-retention. I was also asleep most of the time and fatigued-drowsy and could not get interested about anything around me.
Kidney-function-tests during my Hospital-stay showed, that my kidney-function suffered a lot during the Sepsis and I needed constant antibiotic treatments and I also needed to drink lots and lots of water, then more water and again lots of water etc. and slowly the water-retention started to get a little better bit by bit and my kidney-function started to become a little bit more active again as well.
I feel extremely lucky that I received so much positive medical care and attention during these desperate days and the kind re-assuring medical attention during all of the time made me feel as secure as was possible in this life-dangerous situation and I am very grateful for it.
Such a Sepsis-experience is very upsetting, because Sepsis itself “is very slowly creeping up on the body” and raises the temperature at the same time and this totally disabled me as a result, but before this catastrophy happened, there were no warnings and no symptoms whatsoever. It was only when my temperature raised so quickly to such a very high degree in such a speedy way, that it became obvious that there was something life-dangerous going on.
I am still very fatigued and exhausted from this terrible Sepsis-experience and its urgent constant antibiotic treatments days and nights and I feel certain, that I need much more time to try and recover from it and I also try very hard to get a bit stronger, because right now I am still very "wobbly" on my feet ...
Many thanks again for sharing your kind thoughts and I send you my kind regards from Kristina. :grouphug;
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So glad you are on the mend Kristina. I'm sure it will take a long time to recover. I hope being ravaged by the necessary antibiotics don't mess up your system too much. I know first hand how they kill the good with the bad. I hope this is the road back to your best health yet. Be well.
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Dear SooMK and many thanks for your kind encouragement.
Unfortunately you are right and it might take me a long time to recover from this "episode" and unfortunately the antibiotics also "come along" with some not-so-nice side-effects, but at least I feel that I am on my slow recovery right now and try very hard to do my very best ... One day at a time ...
Many thanks again for your kind thoughts and I send you my best wishes from Kristina and please keep well. :grouphug;
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... I was just going to answer MooseMom's lovely thoughts on another thread, when my health started to deteriorate a lot and hopefully it is not another Sepsis -Episode returning again?
Waiting for medical assistance/help and please wish me good luck, I certainly do need it.
Many thanks for your kind thoughts from Kristina. :grouphug;
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... I was just going to answer MooseMom's lovely thoughts on another thread, when my health started to deteriorate a lot and hopefully it is not another Sepsis -Episode returning again?
Waiting for medical assistance/help and please wish me good luck, I certainly do need it.
Many thanks for your kind thoughts from Kristina. :grouphug;
Wait, what? WHAT?
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Dear MooseMom and yes, there is another nasty "little UTI" taking place, but fortunately this time it was diagnosed well in time, I was put on lots of antibiotics (the very heavy cavalry this time), which gives me a much better chance to hopefully "get rid" of it eventually. The doctors want to really investigate this time why this is bothering so much on such a regular basis and I am very grateful for their care.
Please keep your fingers crossed for a little longer and many thanks again from Kristina. :grouphug;
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Oh, dear! I'm relieved to hear that you caught it in time because you surely don't want another episode with sepsis. I hope the heavy cavalry will knock it out completely. UTIs can become chronic, so I am pleased to hear that the doctors want to find out what is going on.
Thanks for posting, and our fingers will indeed be crossed.
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Oh no, Kristina! Good luck. UTIs have turned into my nemesis too.
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Many thanks MooseMom and SooMK for your kind thoughts and please tell me SooMK, why are UTI's your nemesis as well? Do you also suffer because of "returning" UTI's?
I never suspected that a UTI could become so life-dangerous by quickly turning into a sepsis etc., if left without medical attention for a minute longer...? That certainly puts me under a bit of pressure from now on ... I was also told that because of the kidney-transplant as such, there is no longer a chance to enjoy the luxury of a working immune system... I dare-say that before my transplant took place, I did not take such a possibility into account ... Of course, I was made aware of a compromised immune-system, but I was not quite aware of the life-dangerous medical drama of it ... After all, we do hope, don't we? It is definitely very complicated ... I also heard, that a sepsis can develop even from a tiny little paper-cut etc., all "things" I did not even have to think about "in the old days". I was also advised to regularly check-up on my temperature, as it could indicate a UTI etc.
I shall continue to do my very best and thanks again for your kind thoughts. The heavy "Cavalry" antibiotics are doing a very good "job" and I already feel a bit better again...
Many thanks again and kind regards from Kristina. :grouphug;
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I had a terrible uti in 2017. I ended up in the ER on IV meds. Took a lot out of me. The clinic said you need to see a urologist and he recommended hiprex as a maintenance. My system was pretty messed up with antibiotic side effects and at that time I wasn’t experiencing a uti so I said not right now. I started taking d-mannose, a supplement rec by my neph, although I know not all nephs are fans) and was clear for nearly a year. Then another one. My gyno was unavailable so my PCP gave me amoxicillin then recommended I see a urologist when that didn’t work. I went to a new doc and after a half dozen antibiotics with no lasting relief I gave up on antibiotics and the dmannose seemed to keep the symptoms under control. Eventually, after months, the infection cleared. I kept taking dmannose preventively but lowered the dose. Then about 6 weeks ago, another uti. I called my gyno and she prescribed macrobid which didn’t work. Then she prescribed ceftin which seemed to work fine. I thought it was gone. Then I started being really tired and then last week I had a fever. Called the clinic and now waiting for more drugs.
The NP said I needed to find a urologist who has treated transplant patients. She also said the labs need to be taken from the same place. The first urologist treats mostly cancer patients. The second urologist, I realize in hindsight was not a good fit. She would have me take an antibiotic only until the symptoms were gone. I live far from my clinic and have no local nephrologist. I’ll have to figure something out.
Sorry this is so long but you can see I feel your pain.
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Dear SooMK, many thanks for sharing your thoughts and experiences and I do feel really sorry for your situation and I understand, we are practically “in the same boat”.
I am astonished, that your battle with UTI’s began about three years after your transplant in earnest, just about the same time when my struggle with “it” really became very serious as well. I ended up in the nearest ER, where I was put for 10 days on constant IV-antibiotics because of this resulting sepsis, with more antibiotics to be taken at home, twice a day, for another few days.
Frighteningly enough, when it happened again this week, I did not even notice “it” as such, as “it” was not even that obvious, but the doctors at the ER diagnosed “it” straight away and sent me home with lots of “heavy cavalry” antibiotics to be taken three times a day.
I don’t quite understand why this is happening, because “in the old days” I was not even a UTI-person and to my knowledge I have never suffered ever from a sepsis before. But since the transplant I have been suffering from UTI’s, and it first “introduced itself” directly after the transplant-operation, when I suffered instantly from two UTI’s, one after the other, whilst I was still in hospital, sharing a room and facilities with other female patients in the same room, with me being the only transplant-patient, which was a bit of an odd experience, to say the least and unfortunately it was not quite top-level clean … :'(
Strangely enough, like yourself, I also saw a gyno (just very recently), in my case a female GP, but “in my particular case” it was mainly because of my trying ever so hard to find a medical explanation and perhaps a medical answer and a way forward for the undiagnosed constant pain, but the doctor could not find anything “gyno-wrong” and unfortunately, that still leaves me with no medical answer for the undiagnosed pain ... :'(
I have not consulted with a urologist yet and perhaps that should be my next step?
I am very sorry for you to live so far from your clinic and the fact that you have no local nephrologist sounds very difficult to me and I do hope you can figure something out and I can truly imagine how stressful the situation can be, especially since we always have to “keep an eye” on the function of the transplanted kidney…
Please take great care of yourself and please continue to stay strong and many thanks again for your kind sharing and I send you my best wishes from Kristina. :grouphug;
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I too have struggled with UTI's, both before and after the transplant. My sisters are all prone to them as well. My oldest sister was prescribed a low dose of Premarin vaginal cream to help prevent them and has had only 1 in the last three years. So a year ago, after having three in one year after the transplant, I asked the transplant center and my GP about the Premarin and they agreed it would be a good course of action. In the year since I started taking it, I have only had one UTI and that one was minor. They would not even have treated it if my creatinine had not been elevated. Going forward, the transplant center will be checking my urine every month. They will order a urine culture if indicated. Hopefully if I have another UTI we can catch it early. Apparently with age hormones decline and the membranes protecting against UTI's dry up. The Premarin helps restore this protection. It also avoids the need for prophylactic antibiotics which can lead to antibiotic resistance.
I was prescribed D-mannose by a urologist before my transplant. I took it faithfully for over a year but it did not help.
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Going forward, the transplant center will be checking my urine every month.
My nephrologist who works at the transplant center includes a urine test each month as well. I've wondered why its a standard test but from reading your all's challenges it completely makes sense.
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Hello again and many thanks for sharing your thoughts and experiences, tictink and iolaire. I have been reading about D-Mannose Tablets and Premarin and hopefully one of them could be the answer for these debilitating urine-infections.
At the moment I am still on these latest heavy antibiotics (with typical side-effects) and I do hope I shall be able to go out for a little walk again very soon.
Many thanks tictink for your kind explanation about the decline of hormones with age and I am glad about your kind explanation about Prophylactic Antibiotics, which can lead to antibiotic resistance and I certainly could never take such a risk! Many thanks again tictink for pointing this out to me!
Many thanks for your kind thoughts, iolaire, and unfortunately, “my” transplant centre does not take a urine-test each month, in fact, they see me once every few months, but I shall ask them whether it can be arranged to have my monthly urine check-up at my local GP.
Many thanks again for these inspiring ideas of how to go forward from here and I appreciate your kind inputs about your experiences and thoughts very much and please take great care and best wishes from Kristina. :grouphug;
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Iolaire, I had wanted regular urine tests for years but no one would order them. It was only when my creatinine crept up and they worried about rejection that they added the urine test to monitor the protein/creatinine ratio. Since I have a history of UTI's he also added a urine culture if indicated. I wish they had done that all along because I can have a UTI and have no symptoms. I can't help but think that can not be good for the kidney.
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I've just got to say that these recent posts give me anxiety.
I've never had a UTI in my life — before OR after transplant.
Obviously I'm asked at my appointments if I have burning and urine cultures are done every 3 months, but I've just been lucky I guess. Hopefully not jinxing myself now.
Since I'm sexually active, the transplant nurse made sure to give me a good talking to about prevention in that regard. But still...eep.
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I think UTIs are something some people are prone to and then once you’re immunocompromised they have a field day. I had had a few maybe 40 years before my transplant. I have used Premarin for a long time so there’s not anything more I can do on that front. There was a great article in the NYT a couple of years ago and this antibiotic resistance with UTIs is just getting worse. There are at home UTI tests. I have used them. But I didn’t suspect that was the problem. Maybe I should do an at home test once a month. Right now I have finding a urologist who has experience with transplant patients within a reasonable distance from me on my to do list. Take care everyone!
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For what it's worth, years ago my father was diagnosed with a very small malignant tumor in his prostate. His doctor told him it was of the slow growing type and that just doing nothing would be fine.
My dad did not like the idea of having cancer untreated, so he opted to have radiation treatment.
This removed the tumor, but it injured his ureter in the process, and he had recurring UTIs for well over a decade. The last time I saw him, I'd just flown in from the UK for the summer, and he was having a recurrence. The next morning, he was in the hospital with sepsis as his UTI was of the antibiotic resistant sort. He died the following night.
The horror of it was that he didn't do the one thing his doctors asked him to do, and that was to drink more fluid. I never saw that man drink a glass of water. He said that he didn't like the way it tasted. Can you imagine that? He was happy to sling back antibiotic after antibiotic, but he wouldn't drink just two glasses of water a day.
I mention this because I have wondered from time to time if some kidney transplant patients might unknowingly have had some damage done to the ureter during stent removal, setting them up for chronic UTIs in the future. Do kidney transplant patients have more UTIs than the general population? I'd never really thought about this.
I've never had regular urine cultures taken except for my annual labs, certainly not with my bi-monthly labs. I wonder why?
SooMK, let us know if you find a urologist who has experience with our "special" population!
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Hi all, I hope you find yourselves well, or a bit better today.
I just thought I bud in to say that way back when I still had dad’s kidney I used to have UTI’s lots. Treated with IV antibiotics. Kept coming back. Went to urologist who did a Cytoscopi (sp?) UTI’s never came back.
I could only conclude that the Cytoscopi removed something that obstructed something in the urether which caused them.
Good luck all, love Cas
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Hmmm, this is all so interesting.
I don't have a transplant nephrologist (see a regular one), but I am followed by a urologist who is a transplant surgeon. For some reason, pancreas transplants fall under urology. Probably because in the beginning, they hooked them up (bad terminology, I know, it's early, give me a break) to the bladder for their draining. (Now it seems to be the bowel). Anyway, that team hasn't expressed any concerns over UTI besides, "any fever, burning when you pee?"
What are the best suggestions (brands) for these do-it-at-home tests? Seems like a worthy investment.
The other thing I wonder for us on Septra. Since that's an antibiotic generally prescribed for bladder infections and UTIs, and we take it for different reasons, does this provide some protection OR is it leading to the opposite effect? (antibiotic resistance)
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Really interesting info and comments here.
MM—Most of my life I was a terrible water drinker. I have definitely improved since my CKD diagnosis and even better post transplant. I do need to be more vigilant. I get complacent.
After my transplant I didn’t even know I had a stent until I was told I needed to have it removed. I was sure I had a UTI leading up to the stent removal. I was told I did not. So I thought once the stent was removed all would be well. It wasn’t. The urologist told me I had overactive bladder and prescribed magic pills (Toviaz) and as far as I was concerned, they really were magic. After about 6 weeks I didn’t need to take them any more and all was well for a few years. But then in 2017 I had the worst UTI ever leading to sepsis and IV antibiotics. Then I went a couple of years without one and then I had another one, and so on. A normal immune system routinely deals with the usual Ecoli bad guys which are always around but not for some of us in our special group.
Cassandra—When I went to see my PCP after she’d recommended a urologist, she (the PCP) asked if the urologist had done a cystoscopy. She did not. I suppose my PCP decided to “stay in her lane” and said nothing. Perhaps that needs to be done.
UT—I picked up the at home UTI tests at Walgreens, a local pharmacy, if you’re in the US. I went with the cheapest, I think they were about $15 for 3 tests. My every three month renal testing does not include a urine test. I’m going to ask this question of using the home test on a regular basis of ….someone. I do get the impression that the home UTI kits have a level of respect that my own opinion that I have a UTI does not. This new wrinkle of not even knowing myself seems to lead that an at home test kit is called for.
I thought that antibiotic resistance was personal and local. Something about the way they test for antibiotic resistance is not the same for every lab. If the lab does the "detailed" UTI test where they test it for resistance (which is more expensive and takes a few days) and they say, “here’s a script for macrobid which killed off your ecoli in the lab” and I take macrobid and either symptoms clear up while I’m taking it and then come back when I stop, or it does nothing at all even while I’m taking it—my ecoli has resistance to macrobid. This happened to me over and over again with different antibiotics. I now realize because I wasn’t going to a knowledgeable-about-transplants doctor consistently it’s made the situation worse. Perhaps the dose wasn't large enough or I didn't take it long enough. The transplant-aware doctor is going to know that I need a heavy hand with the antibiotics (although the side effects are awful).
During my research on UTIs and antibiotic resistance I read about the use of phages to treat UTIs which as I understand it began in Eastern Europe about the same time as antibiotics started being used. Antibiotics became very popular and overshadowed phage therapy but research on phages has persisted and they are used successfully with UTIs in some countries (I believe at an institution in Tbilisi) and some researchers think that it might be time to look to phages to help us. There is a wonderful book, “The Perfect Predator” which recounts how a doctor’s husband was saved with phages because she was a researcher and would not give up. Very readable and hopeful.
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Hello again and many thanks tigtink, UkrainianTracksuit, SooMK, MooseMom and Cassandra for your kind thoughts, your sharing of your experiences and all this most useful information, it is very much appreciated and certainly gives me lots of hope!
Despite all the side-effects of “my” current “heavy cavalry” antibiotics, reading all your wonderful inputs, I feel already uplifted again and I am very grateful for your thoughts. Many thanks again from me, Kristina… I am still on these heavily “turbo-charged” Penicillin-medications and must take them for a few more days and, at the same time, I have to put-up with all these unpleasant side-effects … but, after all, I am still here and that’s what it is all about… I shall also try to find a way forward and with all the useful information you gave me here, I feel, I have been given lots of useful “ammunition” to tackle this problem much better from now on and I thank you all very much again.
Many thanks tictink for pointing out, that there can be a UTI which shows hardly any noticeable symptoms. That is very important for me to keep in mind and shows the importance of regular tests, just in case. Many thanks again.
Hello UkrainianTracksuit and you are a very lucky girl that you have not had any problems and/or experiences with UTI’s. You are certainly extremely lucky and I keep my fingers crossed, that it may continue like that. Could it be that you eat or do something special that keeps your immune-system so strong? Do you have a very special diet? I send you my best wishes and good luck!
Hello again tictink, I think it is for me a very good idea, to do my urine-test first at home, if in doubt, just to be either re-assure myself that all is well and/or to know why to act quickly straight away. I have just now my do-it-yourself-test (Siemens Multistix ® 10 SG) at home and it seems quite easy to understand and for me it is much better to check-up first at home to make sure that I don’t get unnecessarily concerned about “it” and to know when to take action and rush urgently to the doctor with the result of my do-it-yourself-at-home-test. This do-it-yourself-test enables me now to feel a little bit more confident to get an idea about when to act urgently. Many thanks again!
Hello again MooseMom and many thanks again for your kind thoughts and I am very sad about what happened to your father and it is also very sad that he could not drink more water. But I do sympathize with him. Drinking liquid can be sometimes very difficult. Take for example our London drinking water. They say it is very safe to drink, but to me it does not really taste very refreshing on its own and I very much prefer it boiled and I prefer a 500ml drinking-cup of Camomile Tea etc. and later another one and my two cups of coffee’s a day etc. and I am very sorry that your father had a sepsis and I feel also very sorry for him suffering from a UTI that was antibiotic-resistant and I wonder how this could possibly happen? It is so sad! Many thanks again for mentioning it and please take care.
... I was wondering as well whether some damage could have happened during my own transplant-operation and “set me up” for future UTI’s? I do remember, that I had the operation-stent still “in place” for many weeks afterwards and I also noticed that something was wrong, when I was told it should have been taken much earlier.
Hello Cassandra and many thanks for your kind input, it is very much appreciated, especially the idea about a Cystoscopy. I feel very happy for you that the Cystoscopy did sort out your UTI’s, but it must have been a difficult and risky decision and go ahead with the operation with a compromised immune-system? Many thanks again for this interesting information and I shall ask my medics about it a.s.a.p.
Hello again UkrainianTracksuit, I just wanted to mention that I have asked my GP about it and have now a do-it-yourself-test from Siemens (Multistix ® 10 SG) and it is not too difficult to understand the do-it-yourself-check-up on whether or not there is a urine-infection. It comes with a colour-chart with which you can easily compare on the multistix-colouration the result, after having put one multistix into the urine-sample. But it is most important to keep the other unused multistix out of the light so that further check-ups are kept as reliable as possible and to keep them very tightly closed in a dark spot, because they are very photosensitive. Get the one you are going to use out of the box very quickly and close the box tightly again. Many thanks again for your input and best of luck-wishes from Kristina.
Hello again SooMK and again many thanks for your sharing your experiences. I also did not know I had a stent after the operation in November and had it removed many weeks later and by this time, I was already in a terrible state and I felt very unwell. I am very sorry for your horrific experiences and I very much appreciate your sharing, because it gives lots to think about and how to sort out “things” for a better and less stressful future. I also wonder about the antibiotic-resistance and I certainly have never ever heard about it before. It certainly gives me the shivers! And it sounds frightening!
Many thanks about your mentioning phages and I shall certainly try my best to find the book “The perfect predator” and try to get educated about it.
Many thanks again to you all for all the most useful information, it is very much appreciated and certainly gives me so much more hope how to become better educated and therefore much better able to tackle the problem. Despite all the side-effects of “my” current “heavy cavalry” antibiotics, I do feel already uplifted again and I am so grateful for all your wonderful and most useful inputs. Many thanks again from Kristina and I do hope I have not repeated myself too often and it was a bit difficult because I am still under these heavy antibiotics and they make my thinking a bit more difficult. Thanks again for your kind understanding and please take care and best wishes from Kristina. :grouphug;
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Hello Kristina. I lived in Surrey when I lived in the UK, and I remember when my mother would come to visit, she'd always remark how good the water tasted. Mind you, this wasn't "London water", but looking back, I remember really liking our water. Whenever I visit now, I am reminded of how nice it tastes.
Where I live now, the water is OK tasting, but I use a filtration system that makes it taste nice. It's called "Zero Water" and consists of a pitcher fitted with a filter through which regular tap water passes. The filter is replaceable, and I get new filters at the local hardware store. They're also available online. I use this filtered water to make various iced teas. What's important is that you get plenty of fluid, and I mention water in particular only because it is easy to get. It's not just that my dad didn't drink enough water, rather, his daily fluid intake was well below what is recommended. I have often read that older people just forget to stay hydrated. I'm not sure that holds true to kidney transplant recipients, but maybe older people in general do forget to keep their fluid intake high enough. Anyway, you might consider such a water filter for your convenience?
I'm glad you are feeling a bit better in yourself. Our fellow IHDers have once again chimed in with a lot of good advice and insight.
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Dear MooseMom and again, many thanks for your kind thoughts and also many thanks for mentioning the water-filter, that really sounds like a very good idea to look into and, you are absolutely right that our fellow IHDers have once again chimed in with lots of good advice and insight. That is extremely helpful for me and I am very grateful for all the shared experiences and thoughts and, my following up the advice makes me already feel a little better, because it helps me a such a lot to see a much more positive way forward.
About the liquid-intake you mention, I was told to drink every day about two and a half litres of liquid and at first, I was a bit surprised, because of my rather slim size with “normal” height etc., it seemed such a lot and at first it was a bit hard, especially straight after my years of total strict fluid restrictions (500ml) during my dialysis-treatment-years.
But then I quickly realized, how important it is, because the two and a half litres liquid every day not only keep my transplanted kidney very busy at all times and therefore the kidney keeps up its function as intact as is possible, but this amount of liquid-intake could also assist my body to help flush-out the toxic elements of our medicines? In any case, straight after the transplant, I really had to persevere in order to succeed, but then it became much easier to adhere to my two and a half litres of liquid-intake every day and now it is quite normal. The most important "thing" for me is to just "spread" my whole liquid-intake evenly through the whole day ...
Many thanks again for your kind thoughts and I send you my kind regards from Kristina. :grouphug;
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I've been looking at these at-home UTI tests and put in an order for the 3-pack ones that I assume have to be the similar kind that SooMK mentioned.
I've seen the Siemens ones, but they seem like a little bit difficult to procure.
But, omg, I have to say, looking at these testing strips where colour has to be matched takes me back! When I was diagnosed with Type 1 diabetes (newborn), I didn't have access to a glucose monitor, until I was like 8. Checking blood sugar meant finding the level (at least a range) by matching the colour it turned to the key on the side of the bottle! And the same thing with Ketostix (tested for glucose/ketones in urine).
I know, babbling, but these things just take me back and I reminisce!
Hello UkrainianTracksuit and you are a very lucky girl that you have not had any problems and/or experiences with UTI’s. You are certainly extremely lucky and I keep my fingers crossed, that it may continue like that. Could it be that you eat or do something special that keeps your immune-system so strong? Do you have a very special diet? I send you my best wishes and good luck!
To be honest, I don't really do anything special. I'm vegetarian, but not especially a "clean eater" about it. (Meaning, I eat Impossible "veggie" burgers at a restaurant from time to time.) I drink alcohol (not abundantly). Nothing special.
It could potentially be that I'm under 40 years old and still have umm, normal membranes and lubrication "downtown"?
Could be just how I'm made? (as I know sometimes physiology makes some women prone to UTIs)
Nothing special at all!
OH! To follow-up on MooseMom's input, I do drink a lot of fluids. 2L is a minimum set from the beginning.
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Many thanks again for your kind reply, Ukrainian Tracksuit and I am sorry about the Type 1 diabetes and know from a neighbour, how difficult this can be at times as well. Please take great care.
Fortunately, I have no problems with the Siemens UTI-test and fortunately there are many different UTI-tests for home-check-ups and I am just grateful to feel a bit more “at ease” by being able to check-up to get a better idea in the future…
Perhaps you are right and a susceptibility to UTI’s might be connected to how we are built plus our age etc. and in my case, it could not be connected to my liquid-intake, which is two and a half litre every day or my vegetarian food … but I would not be surprised if it could also be connected to our compromised immune-system after the kidney-transplant? I certainly have felt very vulnerable ever since …
Strangely enough, I don’t remember many “battles” with UTI’s before my transplant, but since then I certainly have had some battles, plus the one where I was brought to hospital with a Sepsis, which needed me being hospitalized for 10 days with 24/9 on intravenous antibiotics, plus another few days at home on antibiotics. That was quite a frightening experience and I feel very lucky to still have my life plus all my limbs intact!
Right now, I do have to go through another two days of UTI-antibiotic-treatments and from then on, I shall try my very best to avoid UTI’s as much as I possibly can. thanks to the kindly offered advice and thoughts from other IHD-members and I am very grateful for that.
Many thanks again from Kristina and take great care. :grouphug;
The other thing I wonder for us on Septra. Since that's an antibiotic generally prescribed for bladder infections and UTIs, and we take it for different reasons, does this provide some protection OR is it leading to the opposite effect? (antibiotic resistance)
Hello again Ukrainian Tracksuit and your question here is a most interesting and important question! My own UTI-antibiotics are Penicillin and they are also not "only" for UTI's, but also for other different ailments and I also wonder, what the answer to your question could be, especially since an antibiotic resistance sounds very definitive and I wonder what doctors can possibly do to help in such a situation?
Many thanks again from Kristina. :grouphug;
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… but I would not be surprised if it could also be connected to our compromised immune-system after the kidney-transplant? I certainly have felt very vulnerable ever since
Yes, it does. There is no question about it. Information about increased risks was in my transplant information booklet. That whole area of the body is rife with naturally occurring bacteria that acts opportunistically because of immune suppression. There is an abundance of scholarly journal articles that discuss the links between transplant and UTIs simply because they are the most common bacterial infection experienced by transplant patients, and often puts them into hospital.
So, that's the baseline that unites all of us: transplant patients with an increased risk. From there, different factors come into the picture that separate us: age, physiology, fluid intake, general habits, sexual habits, any damage to urinary tract, hygiene practices. It's like trying to play whack-a-mole figuring out why one immunosuppressed person is prone to UTIs and another one does not get them at all or often.
How interesting about your penicillin issue and question. In regard to the Septra (also known as Bactrim), many transplant patients take this antibiotic 3x a week for the duration of their immunosuppression. Such as for me, it's been over 3 years of taking this antibiotic 3 times per week. Since the general population is given Bactrim/Septra for UTIs, it got me wondering, if the regular dose does something to prevent UTIs (besides its use as pneumocystis pneumonia prevention in tx patients) BUT for others, since the body is used to it on a regular basis, it loses its efficacy for UTIs? Or is it somehow contributing to once efficacy is lost?
Sorry, my thoughts don't seem fully formed! I'm sure some brain whizz of a doctor has already investigated this and the answer is somewhere.
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Many thanks again UkrainianTracksuit. Your logical thinking moves into most inspiring directions and I am quite surprised to find out right now, that kidney-transplant-patients take antibiotics three times a week after their transplant-operation has taken place. I had no idea about this and I am quite surprised that it never occurred to me that there are different “variations” on the theme of a kidney-transplant! Who would have thought that … ? I have only been given antibiotics so far as a life-saver during the Sepsis-experience and right now because of the UTI.
I have no idea what to think of it all right now. Which of the two options is the best? Or is it individual? Which option is the better one? Is it to take antibiotics regularly in order to keep the body “relatively infection-free”, generally speaking, or, as in my case, only during an infection? Who does take the greater risks? Are there any medical answers? Mind you, my transplanted kidney has been very fragile from the very start and "it" only functions about 20-30% in any case, so, perhaps I only have to take antibiotics when there is a serious infection taking place, because of the fragility of my transplanted kidney? It all seems very confusing ...
Many thanks again from Kristina. :grouphug;
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Hi kristina,
In regard to the 3x per week antibiotic protocol. I've encountered patients that took it long-term like myself or short-term (for a year after transplant). I think it up to the transplant centers to decide in this protocol.
We do not receive it for bacterial prevention in general, but for prevention of pneumocystis pneumonia or an infection caused by a fungus.
And I found the answer to my question if longer duration treatment with Bactrim?Septra leads to increased incidence of UTIs. It does not. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6918803/
More food for thought, I guess!
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Many thanks UkrainianTracksuit for your kind thoughts and the most interesting information-link and it is certainly more food for thought! I did not hear about pneumocystis pneumonia before and the thought about all the transplant-risks involved plus the realization about our vulnerability is certainly an eye-opener...
Many thanks again for your kind thoughts and the information-link, it is very much appreciated and I send you my best wishes from Kristina. :grouphug;
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Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … :grouphug;
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I hope everything goes better Kristina.
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Many thanks iolaire ... I also hope that this time it is real and not just another illusionary hope, because I really could do with a break ... (fingers crossed) ...
Thanks again from Kristina. :grouphug;
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Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … :grouphug;
... Over one month later, none of the promises of this new transplant-specialist have been realized and I am still waiting ... :'(
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Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … :grouphug;
... Over one month later, none of the promises of this new transplant-specialist have been realized and I am still waiting ... :'(
kristina, I'm sorry you are still waiting to receive the care you deserve. I wish doctors knew what it is like for a patient to have to wait so long. Maybe the Covid crisis has something to do with it. Everything seems to take longer these days and it's very frustrating. Please don't give up. Hang in there. I know you are strong. Take care.
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Dear PrimeTimer, and many thanks for your kind concern. I also wish that doctors could imagine, how difficult it is to wait for such a long time to receive medical answers and medical help etc. and my hope is, that I could perhaps receive some medical treatment soon and be without pain and … adding to that, it is also, on some days, becoming very difficult for me not to take my medical situation personally, despite the fact that over the past three years doctors have appeared to try and find medical answers for “this particular case”... and ... I am still hoping ... :'(
Another problem is, that because of all these latter-day medical problems & medical experiences, i.e. my need for dialysis-treatments and then, after years of refusing to accept a donated kidney from my husband, I finally agreed and my husband's kidney-donation-work-up diagnosed him with bladder-cancer, just in time for him to survive several operations & anti-cancer-treatments etc., and then, after years on the waiting-list, I received my not so successful transplant-operation with a kidney from an 80-year-old deceased donor … and then my husband was being diagnosed with another cancer and needed new operations and treatments, whilst I was not yet able to help him and/or have a chance to start my recovery from the transplant-operation with yet hardly any quality of life and finally, my husband and I trying ever so very hard to get a little recuperation and both of us hoping for a little convalescence etc. But, being without family to assist us, we both seem to have ended up "battle-fatigued" and totally exhausted right now from our health-struggles … and … I would be so grateful, if a way could be found for us to know, how we could find some urgently needed energy to go from here and hopefully be able to build up again … ? :grouphug;
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Hello again ... and ... I have now finally started the complaints-procedure about the lack of medical care since my kidney transplant took place and hopefully "things" get sorted so that I can be referred to another hospital where I can hopefully receive better medical care, not only for the chronic pain I have suffered since the transplant took place, but also for my general medical care after "my" kidney-transplant and the rare diseases I suffer from. As an optimist I had hoped for much too long, that by writing/pleading with doctors/specialists etc. not only at the GP but also at the transplant-hospital where my transplant took place, could be the way forward, but unfortunately I was totally wrong. But how could I have possibly known? If there is no interest by doctors/specialists to assist and/or help a patient in need, there is simply no chance. For example, I was not contacted to discuss my blood-test-results and/or what could be done and/or how to medically approach this or that. At this transplant centre in London the procedure is as follows: a nurse takes some blood, I am being weighed, my BP is being taken, a transplant specialist asks me some questions and that is it. Nothing else. No answers to my questions, no phone call about my blood-test-results, no offer how to medically approach the chronic pain I suffer from since the kidney-transplant took place, nothing. It not only sounds very hopeless but is very sad indeed. Hopefully the complaints-procedure might bring some results? I doubt it, but I just have to try all the same ...
What really puzzles me very much is the following question: Why do doctors/specialists bother to spend hours and hours operating on a kidney-transplant-patient, when afterwards they appear as if they couldn't bother about the outcome of the transplant-operation and/or the patient's medical care and well-being after the kidney-transplant took place, especially when the patient remains to be very poorly and in a seemingly hopeless medical situation, and, instead of enjoying their new kidney-transplant, they are most often at home because they are too unwell to even get up and going? What is the point? :'(
... Not to forget the horrifically traumatic experience, when a kidney-transplant-patient is being brought - straight after their operation - into the situation to share a hospital-room with other patients who did not have a transplant-operation and, not surprisingly, the transplant-patient is instantly verbally being attacked by one other patient there ... and ... that poor transplant-patient is then being left on their own, having to fear for their life, being left without any help/assistance from nurses/doctors/specialists or any patient-organisations ... just after their transplant-operation ... and, most unfortunately, the trauma about this horrific experience does not get better, just worse, as time goes by... because no help or assistance was ever offered ... very cruel ... :'(
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Aw Kristina, I really hope you will get the answers/treatments you are asking for.
Good luck my friend. :cuddle;
Love, Cas
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Many thanks Cassandra ... it is just so very difficult to get answers and treatment which surely would not endanger the transplanted kidney ... and/or to be understood whilst communicating ... and ... we are certainly living in a difficult-to-understand world right now ... :'(
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I am very glad you are starting the complaint process. Your transplant experience is just so very different from what most of us in the US encounter.
Most of us do not really get follow up care from the transplant surgeon. The surgeon does his thing and then our aftercare is relegated to a post transplant team headed by a transplant coordinator. It is through the coordinator that we communicate any concerns or problems, and if the coordinator does not have a solution, then s/he turns to the transplant nephrologist. If the concern or problem is actually due to the surgery itself, then the coordinator would likely turn to the surgical team for recommendations.
All post transplant patients are put into a separate recovery room that is fitted with special air filtration systems and would certainly never be given a room in the "general population".
I am well aware that the US healthcare system has deep ethical flaws seeing as it is run as a profit-making business. Our health insurance system is a nightmare. I don't know if the problems you've encountered are unique to your transplant hospital or if it is indicative of how the NHS "runs" transplantation in general. What do you think?
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Dear MooseMom and many thanks for your good wishes and ... sadly, there are no good news to report yet and, to be honest, I am getting a bit nervous ... :'(
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Dear IHD-friends,
As mentioned before, I have “gone through the complaints-procedures” but I have been informed that nothing untoward was found, and, according to the "final" complaints-procedure-results ... so, I have nothing to complain about… and… since I was verbally attacked by another patient straight after my kidney-transplant-operation, whilst I was not even properly awoken from the anesthesia, that was also just bad luck... and if I had great difficulty to be medically looked after since and had difficulty to be medically treated ever since, that also was just " bad luck"...
Of course, I could now continue my complaint-procedure with the help of a lawyer, but I was already told that “such a case” like mine would take at least four years of continued concentration on this and nothing else, it would also cost lots of money (which I certainly do not have) and would also take lots of strengths and energy which I do not have either. So, as is not unusual and happens more and more often these days in "our system", the abusers win … and unfortunately, being now on record for having complained about what happened to me on our health system with me receiving no help and/or assistance plus coming across wrong people etc., “things” seem to look indeed very grim for my future healthcare and I have to give it my very best to continue as best as I can with my own and my transplanted kidney's survival ...
During the past few months, I was, at least, transferred to another NHS-hospital and hopefully “things” are going medically better for me? At least I have had my very first bone-test and hopefully the receipt of my anti-rejection-medication is going to be easier in the future as well?
But unfortunately, nothing else has positively happened and my medical situation has remained very trying ...
It was - finally - explained about the pains around the lower region, where the kidney-transplant took place, I have been suffering from over the past four years. These pains are most likely the result of some injured/severed nerves “in the transplant region” during the transplant-operation. Of course, it would have been helpful if I could have had the good luck to have this explained to me during the past four years because it surely might have created a better chance for me to live with less stress-resulting SLE/MCTD-flare-ups … but it was, unfortunately, not to be ...
Sorry to come over as a bit complicated, but at the moment I am also struggling with a severe UTI and have to take lots of antibiotics right now ...
I really wish I could find out where to go from here to make sure how to protect my own well-being plus the well-being of my transplanted kidney ... ? :'(
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Oh, I am so sorry to hear all of this, Kristina! You have had such bad luck in your post transplant years, and I regret this so much. Bad luck plus incompetence plus insensitivity on the part of your original transplant team equaled a terrible time for you. It's just not right that "fixing" this would require so much time and effort and money from you. I know it's not the total answer, but you are right in saying that the best thing you can do at this moment is to look after your new kidney as best you can, which you are doing.
I know that the explanation of the pain you've been feeling for so long has been attributed to either nerve damage or a UTI. Are you satisfied with the diagnosis finally being a case of damaged nerves caused by the surgery itself? Are you satiified with any pain management protocol recommended by your new transplant doctor?
I am horrified to hear that you are suffering from such a severe UTI and have to go through yet another round of antibiotics. Please take good care of yourself (well, you always do!). I hope the antibiotics will eliminate the infection.
Are you and your new medical team satisfied with your current renal function?
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I'm so sorry Kristina. This is so unfortunate. It seems that if you were to try to continue working within the system regarding your complaints it would only increase your ongoing stress for no positive outcome. Perhaps it is best to determine what you are able to do to protect your transplanted kidney and your health in general and what you must accept for your own health and peace of mind.
I'm so sorry to hear about the serious UTI. I have done a lot of reading about UTIs as I had a string of them, one after another. The antibiotics are so hard on our system and of course there's the problem of antibiotic resistance. My neph gave me the go ahead to take probiotics (I know this is not the case with many clinics/nephs) which I think help with the GI impact of antibiotics. There are some urologists who are recommending and prescribing vaginal estrogen as a preventative for UTIs. This has worked well for me. So perhaps you can ask about it?
As always I wish you well.
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Dear MooseMom and SooMK, your kind thoughts and answers to my questions are very much appreciated and I thank you very much for it.
... My course of antibiotics has been completed, but I am still not feeling any better and because of this I have started the process of enquiring to find out more facts and details about pro-biotics etc. Don't we have to make as sure as is possible that the milk used etc. has been pasteurized, if not sterilized because of a very fragile transplanted kidney function?
But .. finding out details about this takes time, especially since different scientific findings seem to disagree with each other on just about everything about it and therefore their scientific findings appear very confusing and therefore, for a kidney-transplant-patient like myself, the question remains, how functional and beneficial yoghurt as a pro-biotic could possibly be, since the milk for any particular kidney-transplant-friendly-yoghurt has been pasteurized and/or sterilized?
So many questions and one's instinct seems to be forced to go on “red alert” to make absolutely sure to find out much more about all this from a doctor and make sure my little kidney function remains very much protected at all times and does not get compromised at any time …
Because my antibiotics were extremely “heavy”, it has been suggested for me to take it easy and next week I am going to have another blood test to find out if the infection has hopefully “vanished” by now and hopefully, all I have to do from then on is just trying to recover from this frightening experience.
Of course, “things” could have gone much better during and after my transplant, but it was not to be and at least I am still here to “fight another day”, so to speak and I shall give it my very best and shall continue to try my very best in order to keep my kidney functioning as happy as is possible for as long as is possible.
I thank you once again for your kind thoughts and hopefully my questions and thoughts do not appear too complicated, but I am still not quite well enough at the moment, and I am still struggling a lot with the aftermath of this infection ...
Many thanks again for your kind thoughts from Kristina. :grouphug;
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P.S. :
https://www.msn.com/en-gb/news/uknews/the-human-cost-of-nhs-chaos/ar-AA14lo86?ocid=msedgdhp&pc=U531&cvid=50bbf011954146cbaa7f107908fc5b88
The above report-findings have been published today (21st November 2022) by "The Telegraph", one of the most integral UK-newspapers and the report seems to explain very clearly further reasons behind my own traumatizing experiences during my "after-kidney-transplant-time in hospital" and since ... and it also shows, how lucky I can consider myself to be still alive ... and hopefully our UK-healthcare-chaos and "things" connected with it all are hopefully going to get better ... soon ... because as it is right now the situation is very frightening for kidney-transplant-patients like myself with constant (chronic) health-vulnerabilities etc. ... and ... the current situation comes over, as if our healthcare seems to have been "standing still" with one certain "amount of population" in mind, despite the fact that many, many more (how many thousands?) of people are living here right now and it "comes over" that our Healthcare-System seems to have become overcrowded with many more patients to care for and, as a result of this, it seems to have become over-challenged as well ... :'(
P.S. In order to have "my" recent infection diagnosed & treated I waited the first day in the hospital A&E for over 5 hours without a chance to see a doctor and was encouraged by the medical staff, who knew that I was fragile and had a kidney transplant, to go home because no doctor was there. The second day I waited 2 hours to see a doctor, only to be told by medical staff that I would have to wait at least another 6 hours, if lucky, to see a doctor and again I was sent home without seeing a doctor... and fortunately, on the third day of my waiting, blood was taken and, after waiting for a while, I was diagnosed with a serious infection which was already "on its way" to develop into another Sepsis :'( and fortunately the heavy antibiotics just about stopped its further development, just in time ... :'(
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Edit: I thought the post was going to be about the article and didn't read the whole thing (not enough coffee this morning), so I'm editing this post. All I can say is - Jesus!!! I'm very, very glad you lived to tell the tale! I'm shocked that things were that damn bad! Wishing you a speedy recovery!!
Article comment:
So much crappy medicine on both sides of the pond! We've seen our fair share in the US! I know back in the day kidney dialysis was on the forefront of bad medicine (https://www.dialysisethics2.org/index.php/our-concerns/88-fact-sheet-2007) here - I can't tell you what it is like now. I'll let others have their say on that sort of thing. It has been 22 years since my daughter was in a clinic!
Concerning healthcare in general, once upon a time I thought I was seeing a distant light in a faraway place, but as far as I can tell a basket has been put over that light (with people sitting on it). Where did I see that light? -Singapore. (https://www.coloradoan.com/story/opinion/2017/04/26/letter-heres-health-care-system-promise/100946694/)
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Sorry kristina.
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Kristina, my son has had to go private for to get a consult and testing done for a very painful GI issue, so this article was very interesting to me.
My fear is that there is a real push to undermine the NHS, leading people to think it no longer works (because now it doesn't), and thus letting in American health care companies into the UK health care market. The beloved NHS will become largely privatized, and if you think the bureaucracy is bad now (and it is, according to my son), just wait for the Americans to come in and really make a mess of things.
To American readers, just think of what's been done to the US Postal Service. Undermine it, and then privatize it.
Thank you for posting this article, kristina. I hope you feel better soon.
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I did mention in that editorial I wrote that Medicare has the possibility of being a benevolent dictator - but what if it wasn't? What if it turned out like the renal networks I remember - loaded with all kinds of corporate people there to look out for the interests of their corporate buddies? I see the result not being good - like how the result for kidney dialysis hasn't been good. With the renal networks, we've had the fox watching the hen house. (that is a quote from somebody like an uncle to me, Dr. Kenneth Bays (https://www.dialysisethics2.org/index.php/testimonials/12-de-testimonials/11-dr-bays-u-s-senate-testimony). He was on one of the renal networks - he didn't like what he saw)
Anymore I'm more for a dispersion of power, especially after reading the book 'Goliath: The 100-Year War Between Monopoly Power and Democracy' by Matt Stoller. It helped me realize what I would like to see with these dialysis companies - treated more like utilities. Possibly small community owned clinics? Possibly small non-profit owned clinics? Heck, maybe even a few small for-profits! Emphasis on small! I'm old enough to remember Lynchburg Nephrology Virginia and their work with slow nocturnal dialysis (I think they got sold), they were a small for-profit. I would see them all fighting to get on the renal networks - and watching each other!
When it comes to health insurance companies here in the US, I'm not sure what the difference is between the US and Singapore's system. I started to read an e-book I've got on my laptop - but then I got distracted by bright shiny objects.
However, that said I realize there is a need for some centralized power. I'm also old enough to remember the civil rights battle between the Feds and Governor George Wallace. When a state gets out of line, there has to be some clamping down - like how if a clinic got out of line, it would need some clamping down on.
Edit 11/24/2022: I'll mention one bright shiny object I got distracted by lately was Dr. Richard K. Bernstein's YouTube channel (https://www.youtube.com/@DrRichardKBernstein). He is an endocrinologist, type 1 diabetic, and at 88 years old one of the last of his generation! He also was responsible for the basal/bolus insulin treatment and was a major force in getting blood glucose meters into the hands of patients. I've been watching a lot of his videos and also read his book. I thought I would mention it just in case anybody has friends or relatives dealing with diabetes. (or themselves)
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Many thanks again Plugger, iolaire and MooseMom for your kind thoughts, ideas and sharing your experiences ... and ... MooseMom, I do hope your son recovers well from the GI-issue and I am very sorry that he had to “go private” in his desperation to receive urgent medical healthcare, instead of being able to rely on receiving medical healthcare from our NHS doctors and nurses … Unfortunately, these days many people here feel forced to “go private” in order to receive urgently needed medical healthcare and this puts lots of stress on so many people because "going private" is certainly not cheap and hardly anyone can afford it ...
Many thanks again for your kind thoughts and tips and sharing of experiences, it is very much appreciated and I would like to answer and write much more right now, but I am still battling with these terrible UTI-symptoms, despite the fact that my antibiotics have already been used-up and the quick-test already confirms there is no UTI, but the symptoms still remain and I feel very run-down and need to take lots of rests every day and hopefully I am picking-up again ... soon …
Thanks again and best wishes and kind regards from Kristina. :grouphug;
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… Unfortunately, what I thought was my urgent need to recuperate from the UTI, was - and still is - a terrible flu despite my having had my flu-jab. When I asked why I could suffer from such a terrible flu despite having had a flu-jab, I was told, that the flu-jab I was given did not accommodate this very new flu-variation everyone here seems to be suffering from and so I was prescribed another course of antibiotics just in case the flu might affect my lungs etc. and I am still struggling because it seems to be a very stubborn flu-variation this time... and it makes me wonder what sort of flu-jab I was actually given ...
... At the same time, we are having so many uncounted strikes at the moment (everyone seems to be on strike), including for the first time ever our hard-working nurses … and because of all these strikes, “things” look a bit bleak at the moment, especially since our costs of living have gone up immensely, they have practically doubled ... electricity has gone up to such an extend that everyone has to think twice before putting on the electric heater and not only the weather outside has become very cold ... and just about everything else has gone up in price and many people are really going through terrible struggles to pay their bills, which of course explains the understandable reason for all these strikes ...
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Oh Kristina, what a saga your health situation has become. I'm surprised to hear that the flu vaccine distributed doesn't match with the flu variety that is going around. I read that here in the US that the match is quite good. I'm so sorry to hear this and hope some good health will come your way soon. It's hard to see any upside when you feel terrible. Best wishes.
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Many thanks SooMK for your kind thoughts and hopefully "things" are getting better soon and it is indeed very difficult to comprehend, that the flu-vaccination we have all received did not protect anyone from the current flu-variation "going around" right now ... this is certainly very hard to comprehend ... :'(
Many thanks again for your kind thoughts and I shall do my very best to get better as soon as is possible and I also send you my kind regards and best wishes for Christmas 2022 and lots of good-luck-wishes for the New Year and 2023.
Please take great care and many thanks again for your kind thoughts from Kristina. :grouphug;
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Oh kristina, I am just horrified that on top of having to fight the effects of a UTI, you are also having to fight the flu! I am so sorry to hear this and really regret that your flu jab didn't better protect you. Like SooMK said, here in the US this year, the jab is considered to be more effective than it has in previous years. But being immunocompromised does make most vaccines less effective, so I have to wonder if this is the case with yourself.
I have been reading a lot about the strikes in the UK. Things must be really bad for the NHS nurses to decide to strike. I know that fuel costs have risen dramatically this year in the UK, much more so than here in the US.
Please take good care of yourself, and I hope you recover very soon. The flu can be so dangerous. I'm glad you've been given antibiotics just in case your lungs become affected. :cuddle;
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Dear MooseMom, many thanks for your kind support and you are quite right when you mention that things must be really bad for the NHS-nurses to decide to strike and I do hope they soon get a democratic hearing for a better income because our NHS-nurses do really work very hard every day and they are very dedicated about their work for very little pay and I have heard that some of them even need some help from foodbanks etc. which really sounds terrible. Our postal workers are also on strike and so are the train workers and it is said that they are being asked to become self-employed which would make them extremely vulnerable for exploitation since they would receive no-sick-pay when too unwell for work, less pay and no retirement-money etc. which, if true, sounds really very grim indeed!
… I am not sure whether my kidney-transplant-immunocompromised system is the real reason why “my” flu-vaccine is not effective? I still suffer from this bad flu and the rest of the country seems to be in similar bother and many usually healthy people also suffer from the flu right now despite also having had their flu vaccine … so, it does not really make any sense what is going on? Fortunately, my body seems to fight very hard against this flu, which is good news and hopefully it gets better soon … but it certainly takes its time…
This year is the very first year ever that hardly any Christmas-feeling or New Year-feeling is being noticed anywhere and perhaps this might be connected to the ongoing strikes even during Christmas and the New Year, or the fact that the country seems to have changed in such a very quick time so much, that "things" have become, on occasion almost unrecognizable ...
Please take great care of yourself and I send you my best wishes from Kristina. :grouphug;