I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: waitlisted on September 12, 2007, 08:39:06 PM
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My time has come up now. I have been 1 year on waiting list and we came to agreement with my neph that now would be good time to do the preemptive transplant as I have a approved donor available (my wife).
So the transplant is now scheduled on Oct 18, 2007.
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Congrats! Very excited for you. :yahoo;
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How d you feel about it?
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Congrats and a success transplant.
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That is awesome Waitlisted :yahoo; Here is too a successful transplant and a speeeeeedy recovery :wine; :wine; Please give your wife our highest regards :bow;
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thats great news wish you both lots of luck.
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How d you feel about it?
I guess I feel positively excited to get this now done and after that I can hopefully start doing again longer term plans, when this is not anymore lurking behind the corner.
As I have lucky enough not to really have bad symptoms so far, I have not been too hurry pushing the surgery. My wife has been more pushing for me... However I surely understand from the labs that my kidney function is clearly decreasing faster than some years back and my function is now around 11-13%, so the time has come. My neph keeps also telling me about all the benefits of preemptive transplant.
Now I started regular exercise 2 months ago and have been trying get myself to the best possible physical condition for the surgery.
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I am very happy for you! I was just curious how you felt because my husband is really insistent on donating. I am not quite at that point where I can wrap my hands around the idea of it. I hope it goes great for you and your wife. Lulu
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:bandance; That's great news!!! Congrats! :clap;
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Congratulations !
:yahoo; :clap; :bandance; :yahoo;
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:2thumbsup; Congratulations and good luck. A pre-emptive transplant is an extra special gift! :cuddle; Your wife is an :angel; :bandance;
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Best Wishes! :bandance;
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That is great, thanks to the little Lady from all of us. Good Luck waitlisted!! :bandance; :bandance; :2thumbsup; :grouphug;
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:bandance; :bestwishes;
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Sounds great! Best wishes to you both :thumbup;
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Congratulations and best of luck to you and your wife :yahoo;
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Wonderful news! So excited for you! Best wishes for everything to go smoothly and a quick recovery.
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Best of luck Waitlisted! You and your wife will love Baylor Medical Center of Dallas!! Hope you get Dr Klintmalm!
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Yahoo! :yahoo; What a great wife you've got!
I wish you both all the best! Getting in shape before the surgery will help your recovery!
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Congratulations and may you have a smooth, speedy recovey! Your wife is a hero to give you the gift of life!
Beth
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Waitlisted, is your transplant still scheduled for the 18th?
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Yes I am still scheduled for the action next week. We will have pre-ops on Tue and Wed and the surgery on Thu.
I am getting all the things ready for the surgery. 2 days work left and today I contacted the insurance company to initiate the short term disability claim.
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So Close thinkin of ya ! :grouphug;
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Wow - a week away -- good luck to you both! :cuddle;
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Good Luck. It will be here before you know it :yahoo;
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:bandance;!!!
I will keep you both in my prayers!!!! Goodluck!!!!!!
Lori/Indiana mom to Dustin 22 with FSGS/ dialysis
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Don't worry about the surgery. I had mine after I had been exhausted by 8 years of dialysis, during which my hemoglobin had been too low to do any exercise at all, and yet everything went fine. If you are like most people, you will be pleasantly surprised at how simple the transplant turns out to be. In my case I had absolutely no pain at any time from the operation, and the only thing that tickled a bit was the urinary catheterization to keep urine from flowing during the operation. I was up and around three days later and on a plane back home with more energy and alertness than I had had for years. Overall, I would say that the medical disruption of my life during the week I had surgery was less unpleasant than the disruption caused during the average month of dialysis.
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:bestwishes;
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This is exciting! All our best wishes are with you. Please keep us posted. We are going through this WITH YOU. Looking forward to a very successful surgery and recovery for both you and your wife. Give her our love. :grouphug;
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Not long now.... Can't wait to hear all about your successful transplant. :cuddle;
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:2thumbsup; Very good news!!! Not long now.... you are in my prayers
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Hey waitlisted - I wish all the best in the next couple of days! Hope your wife gives you a great kidney and that you both have a speedy recovery! :2thumbsup;
Please let us know how you're doing! :cuddle;
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Hey Waitlisted, hope all the things I told you about comes true for you in the morning. You and your wife are in good hands with Baylor!!! Looking forward to seeing how things go.
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Tomorrow is the big day. I hope everything goes smoothly! Hugs and prayers. :cuddle;
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OK Waitlisted, today is the 18th, can't wait for you to come back and tell us how it all went. Godspeed my friend :cuddle;
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Thinking of you!! :grouphug;
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Status update. Transplant done yesterday surgery took 95 minutes. After surgery I was in ICU until today morning when I was taken to my regular room. I feel good and walked already to visit my wife in different floor. Crea was 7.8 before surgery, after surgery it was higher but today morning it was down to 2.8! So everything looks good so far. Actually I seem to be in better shape than my wife.
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:yahoo; Yay! That's great waitlisted!
I wish you and your wife a speedy recovery! :cuddle;
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Congratulations!! Waitlisted things are going in the right direction :bandance;
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Congratulations! :thumbup;
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Congrats guys!!! :bandance; :bandance; :bandance;
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Congratulations :clap; :clap;
Hope you and your wife are resting and feeling good soon.
willieandwinnie
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WONDERFUL!!! :yahoo; :yahoo; That is GREAT news!! Hopefully your wife will start feeling better, so you two can go out and partay!!!! :beer1;
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Hope your wife has a speedy recovery too. Hope all goes well and congradulations.
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WOW, 95 minutes? I think we got a record here folks, that is FABULOUS... so glad it all went well and i hope you and your wife are up and at 'em in no time (well, sounds to me like you already are) ;) Godspeed my friend oh, and CHEEEERS :beer1;
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:clap; :2thumbsup; :yahoo;
congrats!
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:yahoo; :yahoo; :bandance;
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Actually the surgery time was 1h 45mins, which is still pretty fast, my typo yesterday. Kidney keeps working well, today's crea was down to 1.7
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OMG :yahoo; waitlisted I'm so happy for you and your wife. Now she really gets to rule over you hehehe
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That's encouraging news. Hope you both have a speedy recovery.
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Congratulations. Wishing you and your wife a speedy recovery. :yahoo;
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:bandance;
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Things are still proceeding fine. The prograf level was bit high yesterday, so they needed to reduce the dosage and maybe because of that the creatinine stayed unchanged in 1.7 from yesterday. The doctors are expecting it to lower more tomorrow.
Some drugs (prednisone & prograf?) are causing me some feeling of heart pounding even the heart rate is not getting high and makes me feel bit shaky, also the blood sugar levels and blood pressure are still but high, but they all should get better when the drug dosage does down, I hope at least.
The biggest complain at this point of time would be the foley, which I hate, but hopefully I get rid of it tomorrow morning and then I can go home.
My wife left home today, so I am now alone here in hospital, but at least I got my laptop and web browsing is more comfortable than earlier with my cell phone. :thumbup;
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Glad your doing good. Yeah those foley catheters are a nuisance. I hate when they put those in while your awake. You'll feel better when they lower the dose I'm sure.
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:bandance; :yahoo; :bandance;
YEAAAA! Congrats! Here's to a speedy recovery :beer1;
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Now I have been 3 days at home and I feel very good. The incision is has been getting better every day and I have no problems in sitting, moving sleeping on my side etc.
However there is some concern about the lab results: creatinine was stuck in in hospital on 1.7 (3 days in row) and in the clinic visits on Tue it was 1.8 and today 2.0. So , now it will be checked again tomorrow and if the direction does not change I need to go back to hospital tomorrow for biopsy. :(
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Try really hydrating and see if it doesn't improve the labs. Also, if you are on Prograf, too much can also increase the creatinine. It seems likely that they would address each of these potential causes before doing a biopsy.
I am glad you are healing and feeling better!! :cuddle;
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Hopefully yours will fall back down like mine did, out of nowhere, for no reason ... goodluck :grouphug;
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Hopefully it is all just normal and everything will check out fine soon. In the meantime, try not to worry and enjoy life my friend :waving;
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Yes, the doctor was concerned about me being dry with the huge amount of urine I have been producing last days, I have also lost 4 kg of weight during last 3 days (I am now back in my pre-trasplant weight).
So was told to have lot of liquids today and liquids not meaning water, but soups, so that I get salt as well.
I still hope that this will fix the direction of creatinine, but as I was told on last day in the hospital that if the creatinine keeps on 1.7 level they probably would like to do the biopsy. They don't do protocol biopsies in my center, but they said they have a low trigger level for doing one. So based on all this I am mentantally prepared that they will want to do it, but we'll see it tomorrow.
The Prograf level has been OK, since after the dosage reduction on second day. Yesterday's level was around 6 and they would like to keep it around 10 at this time. On the first day it was 22.
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Something else I was thinking of -- I recently met Lori Hartwell at her home when she was donating some items for our Las Vegas dinner - and she told me something that I found fascinating. When she got her 3rd transplant her creatinine never went below 2.0. The doctors told her that it most likely would fail and she should be prepared. The highest her creatinine has ever gotten is 2.2 - and she has now had that kidney 17 years!!
Jenna's team said she had to have 2 liters of water per day - ON TOP OF all the liquids from soup, milk and juice. It really helps the kidney to flush out and stay healthy.
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Yeah... I have 4, 20 oz water bottles in my fridge, and I know I got my fluid for the day when they are all gone. So that way, I never forget how much I need to drink before going to bed for the night. :thumbup;
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Better news... the creatinine was down a bit to 1.9. They are suspecting that I am on the dry side as in addition to my old still working kidneys I have now the new one as well and together they are working on "overdrive" and I am producing more urine than I get liquids in during the day. So I need to pay special attention to the hydration, but not inly water and hopefully the body gets stabilized soon.
I also need to start keeping log about the amount I drink daily and compare it to the output, so we can see they stay in balance.
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thats great news :2thumbsup;
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:thumbup; Great news. Now fill your glass again! :wine; :wine; :cuddle;
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Keep it up, here :wine; :beer1;
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good for you!!! I'm so glad your kidney is working so well!!!
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Now it looks like I am on my way to biopsy. The creatinine keeps trending slowly upward, today's figure was 2.1. (1.7 -> 1.8 -> 2.0 -> 1.9 -> 2.1)
Yesterday I drank over 5000ml, so I was well hydrated and that cannot be the reason. They also did sonogram today, which was showing that everything is OK. Now I have biopsy scheduled for Wed and only if the creatinine would suddenly drop (without any reason) tomorrow it would be cancelled.
How does the biopsy procedure go and treatment of possible rejection?
Another issue I have is the pain in my left wrist from the IV, I have a bad throbbing pain which even disturbs my sleeping and does not really go away with pain meds either. The took vascular sonogram for that today, but that looked fine as well, so they concluded it being from IV. They told it might take couple of weeks to go away. Has anyone else had something similar?
The wrist pain is actually my biggest and only real pain I have, otherwise I feel very good.
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I hope everything goes well with the biopsy waitlisted, maybe they hit a nerve in your wrist, it must be pretty bad if pain killers dont help, I hope your feeling better soon, keep us posted please :2thumbsup;
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Good Luck. I hope all goes well. :cuddle;
Amanda
xxoo
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:cuddle; Goodluck with the biopsy. I hope it all turns out o.k and it is not rejection.
I agree with Goofynina, is sounds like the IV hit a nerve. It usually takes a few weeks for the nerve to heal. Boy does that hurt!!
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How does the biopsy procedure go and treatment of possible rejection?
The biopsy is a needle that is inserted into the donated kidney to retrieve some tissue samples, it may require a couple tries to get enough of a sample. There is a loud click of a noise when the plunger is pushed to inject the needle. It can be unnerving to hear that noise. As far as treating rejection, there are a couple of different types of IV medication that can be given to try to curb rejection. I think I read somewhere that each type of those meds is for what stage of rejection you are in, but I could be wrong. They may also change your immunosuppressant regiment and amount. However, I hope you are not going into rejection
Take Care and Get Well Soon
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When I had my kidney biopsy I thought the "clicking sound" sounded like a hole puncher. Man, I thought he was taking chunks out of my poor little kidney! ;D
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Good luck! :cuddle;
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Biopsy was done yesterday and today the creatinine was down to 1.7 :thumbup;, but the biopsy showed mild 1A rejection :thumbdown;, so now I get 5 days course of 350mg Solu-Medrol per day and that should hopefully take care of the rejection.
I was warned about bad side effects during next days, so let's see what happens.
I feel like working, not being on sick leave, as I have been in clinic or hospital now every day during this week, I wake up in early in the morning and leave around same time I would leave to work, I just have twice the distance to drive compared to my office. Now with this rejection treatment I will be going there all 7 days during this week...
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I'm sorry to hear that. Is the medicine done through an IV or something since you have to drive there everyday? I would hope they're not making you drive there just for a pill! Or do they do blood work too?
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don't worry about working, worry about your new kidney. be glad they don't keep you in the hospital until the rejection is over.
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Hope they can stop the rejection with those drugs, and the drugs don't effect you too much. Good luck to you :thumbup;
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I'm sorry to hear that. Is the medicine done through an IV or something since you have to drive there everyday? I would hope they're not making you drive there just for a pill! Or do they do blood work too?
Solu-Medrol is administered through an IV and I believe they do the blood work as well every day to see the progress.
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:( I really hope that you are not in rejection. Try to remain positive okay I'll be praying for you. :grouphug;
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Pray for the best, prepare for the worst, sending positive thoughts and prayers your way Waitlisted :cuddle;
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I found this on the internet:
Treatment of rejection usually consists of three daily doses of intravenous methylprednisolone. This drug is also known as solu-medrol
and is an intravenous form of prednisone. You may be admitted to the hospital to receive the solu-medrol. In some cases, we arrange
for a home care company or your local doctor to give you your solu-medrol at home. One of the major side-effects of solu-medrol is increased
blood sugar. You may need extra monitoring if you are diabetic.
If rejection is extremely severe, or if it persists after the above treatment, a second anti-rejection medicine may be used. Your normal
immunosuppression medicines be adjusted or changed also during a rejection episode.
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Solumedrol.... my enemy!!! :lol; I was on that for 3 months at a time, very high doses, like 5 different times... ahhhh!!
Good thing you don't need a long period :grouphug;
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Sorry to hear the news, hope you get better soon.
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Sending good thoughts your way.. :cuddle;
Amanda
xxoo
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5 days Solu-medrol course is now over the creatinine was both on Fri and today 1.6, so I guess it did what it was suppose to do. :thumbup;
I was surprised to get hardly any side effects I was warned about, the biggest issue was my glucose level, which went high and when it was controlled with glipizide they suddenly went too low. This should hopefully get sorted out when the prednisone dosage is again lower as I was never diabetic before transplant.
Now I have a first "free" day in over a week, as my next clinic appointment is on Wed.
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Hope alll goes well from now on since deling with this issue
Best of Luck
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5 days Solu-medrol course is now over the creatinine was both on Fri and today 1.6, so I guess it did what it was suppose to do. :thumbup;
I was surprised to get hardly any side effects I was warned about, the biggest issue was my glucose level, which went high and when it was controlled with glipizide they suddenly went too low. This should hopefully get sorted out when the prednisone dosage is again lower as I was never diabetic before transplant.
Now I have a first "free" day in over a week, as my next clinic appointment is on Wed.
:clap; Hey that's great. I hope everything stabilizes and you can relax. Thanks for the update, I was wondering how you were doing!
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5 days Solu-medrol course is now over the creatinine was both on Fri and today 1.6, so I guess it did what it was suppose to do. :thumbup;
I was surprised to get hardly any side effects I was warned about, the biggest issue was my glucose level, which went high and when it was controlled with glipizide they suddenly went too low. This should hopefully get sorted out when the prednisone dosage is again lower as I was never diabetic before transplant.
Now I have a first "free" day in over a week, as my next clinic appointment is on Wed.
Glad your done. :grouphug;
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Thats great news WaitListed, glad you got no side effects :2thumbsup; Hope all stays well for you :cuddle;
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So glad to see the good news!
May the rest of your healing journey be
easy and smooth
Anne
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Things seems to get more stable and better, today's creatinine was 1.4, which is my record. :2thumbsup;
Glucose level is also well under control now when Solu-medrol was stopped and if everything stays OK, I have only 2 clinic appointments next week.
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:thumbup; Great news. :bandance;
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Thats fantastic news Waitlisted, so your feeling better right? just want to make sure that EVERYTHING is good now ;) ;) :2thumbsup;
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Great - 1.4 is good! Very good! :clap;
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Thats fantastic news Waitlisted, so your feeling better right? just want to make sure that EVERYTHING is good now ;) ;) :2thumbsup;
Yes, I am feeling good. Actually I have been feeling good all the time and if there would not be small amount of soreness/tightness in the incision, I would not even remember that I have been in surgery 3 weeks ago.
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:bandance; I love good news!
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:clap; Nice to hear you're feeling good!
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Cool :2thumbsup; :clap; :yahoo;
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Great news WL. :2thumbsup;
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:2thumbsup; Good for you!
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Glad to hear you're feeling good :2thumbsup;
Has your experinece at Baylor and DTI been a pleasant one?? I'm on the list at Baylor, so I'm just curious.
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Has your experinece at Baylor and DTI been a pleasant one?? I'm on the list at Baylor, so I'm just curious.
Yes, I have been very happy with everything in Baylor and DTI.
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Hey waitlisted, glad everything is going well now and that your experience with DTI and Baylor were as good as mine. I normally go still on Tuesday morning, do you have a general day you go? If u see me, say hi.
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Hey waitlisted, glad everything is going well now and that your experience with DTI and Baylor were as good as mine. I normally go still on Tuesday morning, do you have a general day you go? If u see me, say hi.
My visits have been still very irregular. Now I am expecting that starting next week I would start going Tue and Thu. I have my appointments normally at 9:20, what time are you going?
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On Tuesday its at 8:00am so I can get to work. On Dec 4th though, its at 9:20. :-)
So I'm sure I'll see you there. Just look for me, I'll have a Red and Black backpack.
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Just a quick update. Everything has been (fortunately) very uneventful, after the rejection episode my creatinine has been stable on 1.3 for last month and I am visiting the clinic once a week. I am tapering down the prednisone 2 mg per week and this week I will end up to 10 mg per day, which is suppose to be my maintenance dose.
In 1 month tests my Glofil was 91 and Creatinine Clearance 128, so the kidney is working very well.
I started to exercise again last week, still only cardio as the doctors did not like the weights yet. After 2 months, which is coming next week, I was told I can do anything.
I am still on short term disability and will go back to work in mid January after the 3 month tests.
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:2thumbsup; That's great waitlisted - I am please to hear you're doing so well!
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Great news.
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Great to hear everything is going so well.
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Thanks for checking in and updating us Waitlisted, hope things continue to get better and better for you, :) Please keep us posted on how your doing :2thumbsup;
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Great to hear from you and glad everything is going well. :2thumbsup;
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Haven't been too much reading the discussion lately, but here is a 6 months update:
Everything has been great, I don't really remember that just 6 months ago I was in a major surgery.
Creatinine has been settling between 1.1 and 1.3. The Glofil was in 1 month 92, 3 months 97 and in 6 months 101, so based on that the kidney is in excellent condition.
I also got rid off the Glipizide as my sugar levels stay in control nowadays without any medication. Current dose of Prednisone is 7mg and with that my sugar levels are OK. (I was never diabetic before the transplant)
Also my cholesterol level is at least currently fine without any medication, even I was on Zocor before the transplant and the immunosupressive drugs are suppose increase the cholesterol level.
I have been back at work since mid Jan and after that I have been exercising very little compared to when I was on sick leave, now I would need to do it after work and I am getting lazy...
In April I was travelling to Europe for business, and no issues with that one either.
The only "issue" really is that Prograf seems to be causing some hair thinning, but I think that's a small price for the working kidney.
My current medications are:
- Prograf 2mg twice
- CellCept 1000 mg twice
- Prednisone 7 mg
- Rocaltrol 0.25 ug
- Norvasc 10 mg
- Bactrim 400 mg
- Nexium 40 mg
- Calcium 1500 mg
- Magnesium 400 mg
plus multivitamin and some other non-prescription ones
Clinic visits are in every 6 weeks.
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:thx; Thanks for the update - I am happy to hear from you!
Take care! :waving;
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:waving; waitlisted. Good for you. Glad you are doing well. :cuddle;
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I am so glad things are good for you!
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Glad everything turned out in your favor. :thumbup; Maybe now you can grow a second eye... :rofl;
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Always exciting to hear good news. Thanks for keeping us in the loop.
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:thx; Thanks so much for the 6 month update! I'm so glad to hear you are doing great!!! :2thumbsup;
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Glad to hear all is well! :)
As for the hair thinning... there is a shampoo system that Walmart sells in their salon, I use it and I have noticed the thinning areas are getting thicker again. Try it, it's a lil expensive, but not that bad and it works. :cuddle;
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Thanks for posting an update. My husband had a transplant mid-May and we are looking ahead. Happy to hear that you are doing well. :2thumbsup;
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Last couple of days I have been feeling sick, no fever (99) but all other nasty symptoms: headache, body ache all over, stomach pain, some diarrhea,tiredness etc. This has been getting a bit worse day by day and I will be flying to Europe for vacation tomorrow, so I decided to call the clinic this morning and see what they would, even I did not have fever.
So I went there and in regular blood work only abnormal was bit low white blood count. At this point of time they said I might have CMV, as I was CMV- before transplant and my donor was CMV+. I took Valcyte for 3 months after transplant and that point of time they stop itit was stopped
So I was sent to additional tests; chest X-ray, blood bacteria culture and CMV test. CMV test will come back only in couple of days, so they told me to start on Valcyte already now and call back on the test result next week.
I hope this is getting better soon, as even I don't have fever, it feels like I would have, I don't have much energy to do anything and the ache in whole body makes me just want to sleep. It is not going to be fun to sit 13 hours in plane, so I have to see what kind of pills I take to make me more confortable.
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UUGGHHHH! I hope you feel better soon!
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Oh no, sorry to hear that you are not feeling well. I hope that you do okay on the long flight. Stay hydrated. Those planes are really, really dry.
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Quick update: lab tests confirmed that I have CMV. The CMV level have been checked weekly and during the first week the viral level remained same, so the doctor lowered my CellCept dosage a little help the situation. Yesterday was the 3rd test and now the viral level value decreased to half, so the the situation is improving.
Most of my symptoms went away in couple days after starting the Valcyte, only the stomach pain was lasting longer and continued almost 2 weeks, but now that is also gone.
Fortunately I know the people in the local hospital as they have treated me earlier, so it was very easy for me to get good treatment during my vacation.
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I am happy to hear that you are feeling better. Did you end up going on your trip? How long will you need to stay on the Valcyte?
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waitlisted, I hope you are doing better. Len has been on Valcyte now for over 10 months. He is now on 1 three times a week until September and then he will be off it. He has had labs that came back and said he was positive for CMV and the next set of labs will say negative. It's enough to make you want to :banghead;. I hope you got to go on your trip and enjoy yourself some. :cuddle;
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Here is a late update on my CMV experience. After my trip I went back to my clinic and that time (mid July) the CMV test was negative. All the tests after that have been negative as well. Now they stopped the testing, but I am still taking Valcyte 450mg per day for now.
How has it been for the others after the CMV infection has been treated and Valcyte stopped? In my home country they told me that normally they would keep testing the CMV virals after stopping the Valcyte to see that it does not come positive again. In my clinic I have been told that they don't normally do CMV test unless I have some symptoms suggesting I might have a new infection.
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I am glad you're doing okay. I don't know about the long term treatment for CMV, but I hope you don't have anymore symptoms. Thanks for the update! :waving;