Help Please!

[DivabeticLeslie]

I'm new to the community and would love to hear advice from others about preemptive kidney transplant. My GFR is in the 16-17 range, creatnine 2.9 and I'm still feeling pretty good but since my living donors tests are about to expire, my transplant center is wanting to schedule the surgery now. Anyone have experience with having the transplant surgery before they actually were feeling super sick?

[Bassetmommer]

I do not have experience myself but my neighbor had a cadaver transplant at GFR12 and not on dialysis. The thought was he would do better with it than waiting. The sooner you can get it done the better.

[RavaSpirit]

I do not have direct experience either. My doctor tried to set me up for a transplant before dialysis but it did not work out. The logic was that the body is stronger and can handle the operation with a higher rate of success and long term viability of the transplant.

My two cents would be to schedule your transplant sooner than later, especially with a living donor, because you can feel fine one day and the then feel really bad in the span of a day. Without any rhyme or reason. This is not medical advice, just my opinion since even on dialysis I worsened for no reason before my transplant.

[Blue-Quilter]

My eGFR was 15 and my creatinine was 3.1. I was tired all the time, but I was getting up at 3:30 for work and not getting to bed early enough. I had a bit of brain fog which I attributed to having gone off my ADHD meds as part of a clinical trial. I was overweight which didn't help, but I thought I felt fine.

Then I got the call for a deceased donor transplant, and I took it. I couldn't believe I got the call, and if it was a mistake and someone else was supposed to have been called, I didn't want them to figure that out until AFTER the kidney was in my body! I know that sounds selfish now, but I didn’t have any living donor prospects.

That was five years ago and it was not an easy road at first. The kidney I was given "took a hit" according to the surgeon, so I had some challenges. I'm finally feeling good. That would not be an issue in a living donor situation. Statistically, a living donor with a pre-emptive recipient is the best situation. My younger brother got his first kidney pre-emptively from his wife.

Both my brothers said their brain fog lifted immediately. My younger brother is running, cycling, playing tennis and pickle ball, at least one activity every day. My older brother walks (bad knees) but still plays tennis as well. He was on dialysis for 18 months first.

Get all your ducks in a row and do it as soon as it is mutually convenient. You will be surprised at how much better you feel after you've recovered a bit. Best wishes!

[theaurabesh]

Yes, had a transplant before I was far enough gone to require dialysis. Five stars, highly recommend. It's better to get the new organ earlier and save the damage to your body. It will be 25 years since my transplant and still going strong.

[Winner76]

Hi,

I was always told you don’t realise how sick you are until you get a new kidney. I think you get use to feeling a certain way like tiredness and brain fog etc. I spent 8 years on dialysis before my transplant. My advice would be do the surgery now , dialysis can damage your body avoid it if you can.

Good luck

[Transplant2018]

I had a pre-emptive transplant from a living donor almost six years ago when my eGRF was 15. My transplant center took the opposite approach from yours as I was told to wait until my eGFR was lower in order to get the most time out of my native kidneys. I was not super sick but had extreme fatigue, couldn't exercise, had brain fog and was sleeping far too much and never feeling rested. I had the transplant and felt so much better immediately afterwards - as another person said, you don't realize how bad you felt until you feel better. You want to do everyting possible to avoid dialysis: my advice would be to go for it!

[PostivelyJo]

my EGFR was 5 Creatine 689. I must have been a week away from dialysis when I got mine magical gift. Weirdly it was only in the last month that I suffered with symptoms. Stay present. Your journey is unique .

[PostivelyJo in reply to PostivelyJo]

I meant unmanageable almost intolerable symptoms.

Good luck

[Tolmezzo]

Don't wait any minut discharge any doubts and go for pre-empive! This is my recomendation!!!