When to have the transplant?

Are you waiting to receive a transplant? Share your kidney transplant experience.
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When to have the transplant?

Postby kris » Sat Mar 07, 2015 5:39 pm

I'd love advice on when to have my transplant. My GFR is 21. I've been approved for a transplant, and several living donors are being evaluated. Assuming one of them works out, how do I know when it's time? The docs say it's up to me. On the one hand, I feel pretty lousy much of the time, sleep a LOT, have little energy, am on lots of meds for BP, calcium, etc, would love to get this done and feel better. On the other hand, I am still functioning with my kidneys, am tired but not super sick, still go to work most days, I know the anti-rejection drugs carry their own risks, .... I am very confused. Do I wait as long as I can, until it's nearly time for dialysis? Or go ahead soon, before I get sicker? Thanks for any thoughts.


Re: When to have the transplant?

Postby hb_brat » Mon Mar 09, 2015 10:38 pm

I would definitely do it before having to go on dialysis. I was put on the kidney transplant list about 20 years ago because my nephrologist wanted me to use a cadaver donor first if I could wait that long (5 year waiting period at that time), meanwhile my family/friends were being tested. I had the beeper and went through all the classes as if I were going on dialysis.

I was like you tired all the time, even having iron transfusions and Epoetin shots to try to increase energy. However my kidney function went down hill too far and I had to schedule the transplant, my husband was the donor and everything has been working fine since May 2001, praise God.

Nephrologist said the cadaver donation last approx. 10+ years, live donors last approx. 15-20+ years...so its possible to have more than one transplant in your lifetime! Something else to look forward to...lol, I met people at Cedars Sinai who had many transplants, like they just keep sticking them in there, it was amazing!

I guess if you have a lot of living donors that qualify, do it soon...If only one qualifies, try to hold out a little longer. Best wishes!

Renal Rehab Believer

Re: When to have the transplant?

Postby Renal Rehab Believer » Sun Apr 19, 2015 5:40 pm

I asked this question to my Nephrologist at Beth Israel Deaconess Medical Center in January, 2015. My creatinine continues to rise (6.75 most recent) and gfr calculates to 6%. The amazing thing is that I feel better now than I did in 2013 despite these terrible lab values. I am living proof that it is not just about creatinine and gfr. There are three danger signs that may indicate it is time for a transplant. I have been told that when my blood pressure is no longer under tight control, when I start to accumulate fluid in my extremities or around my heart, and when my potassium starts to rise (harmful to heart) then I should get a transplant or start dialysis.

I believe that key factors to feeling better include exercising daily, eating a healthy whole foods diet (see nutrition tips on PKD site), and drinking plenty of clean water. (I carry water from my home everywhere I go as I know it is pure). Ask your medical team to help you figure out why you are so tired. I feel so much better since my anemia is under control and I am exercising daily. There may be some simple lifestyle changes you can make to feel better.

My potential live donor did not work out. I am seeking a new one. I continue to hope and pray that I will be able to have a preemptive transplant before dialysis. It has been proven statistically that a live donor and preemptive transplant is the ideal. However, kidneys do not last forever, so I would try to keep your birth kidneys a bit longer.


Re: When to have the transplant?

Postby bethaevans » Wed Mar 09, 2016 5:23 pm

i'm just barely at stage 4 failure - gfr 26. i'm a nervous wreck about it. at what level gfr did you start looking for a donor kidney? how long did it take to find one? should i start looking now?


Re: When to have the transplant?

Postby kav » Wed Mar 09, 2016 5:40 pm

I remember this being a really inspirational webinar from the PKD website talking about when you should really start asking questions like that.

http://pkdcure.org/learn/multimedia/web ... e-possible


Re: When to have the transplant?

Postby Jean_George123 » Thu Apr 27, 2017 6:43 am

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