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Author Topic: My pre-dialysis-days have finally come to an end...  (Read 78732 times)
kristina
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« on: November 28, 2014, 03:32:04 AM »

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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #1 on: November 28, 2014, 06:14:52 AM »

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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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Darthvadar
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« Reply #2 on: November 28, 2014, 07:00:11 AM »

The very best of luck!...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
MooseMom
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« Reply #3 on: November 28, 2014, 08:33:43 AM »

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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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #4 on: November 28, 2014, 03:06:49 PM »

You are very self-educated on everything about dialysis.  You will do fine.

Keep us posted.
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monrein
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« Reply #5 on: November 28, 2014, 03:11:01 PM »

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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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
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Second trx doing great so far...all lab values in normal ranges
cassandra
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« Reply #6 on: November 28, 2014, 03:41:43 PM »

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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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Jean
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« Reply #7 on: November 29, 2014, 01:56:39 AM »

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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One day at a time, thats all I can do.
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« Reply #8 on: November 29, 2014, 02:47:51 AM »

 :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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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #9 on: November 29, 2014, 08:09:47 AM »

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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MaryJoe
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« Reply #10 on: November 29, 2014, 08:42:25 AM »

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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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
amanda100wilson
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« Reply #11 on: November 29, 2014, 05:44:16 PM »

I am sure you will do just fine, Kristina.  Fear of the unknown is usually worse than the reality.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Deanne
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« Reply #12 on: November 29, 2014, 07:36:55 PM »

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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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
galvo
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« Reply #13 on: November 29, 2014, 10:46:22 PM »

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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Galvo
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« Reply #14 on: November 30, 2014, 04:54:04 AM »

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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kitkatz
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« Reply #15 on: November 30, 2014, 02:22:21 PM »

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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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kristina
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« Reply #16 on: December 03, 2014, 03:03:24 AM »

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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
obsidianom
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« Reply #17 on: December 03, 2014, 03:38:45 AM »

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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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
iolaire
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« Reply #18 on: December 03, 2014, 07:38:56 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #19 on: December 03, 2014, 08:08:05 AM »

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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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
kristina
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« Reply #20 on: December 04, 2014, 03:19:47 AM »


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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #21 on: December 04, 2014, 07:52:35 AM »

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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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
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« Reply #22 on: December 04, 2014, 05:18:26 PM »

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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kristina
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« Reply #23 on: December 06, 2014, 02:35:07 AM »

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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
obsidianom
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« Reply #24 on: December 06, 2014, 11:42:08 AM »

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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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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