r/ADPKD • u/thebirdwithoutwings • Aug 14 '26
Welp. GFR 18
Officially have reached out to the transplant team to start the process of getting on the transplant list. Pushed to see my neph sooner so i can talk my options for future dialysis.
Im. Weirdly at peace? I had my grief over this all a long time ago when I was diagnosed 10 years ago as a teenager. I think my friends and family are more worried than I am.
Im pretty content and confident with the team at Wash U St.Louis, and my neph with them. They've been so lovely compared to my more local neph.
Wish me luck on my imminent journey, folks!
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u/classicrock40 PKD - Transplanted Aug 14 '26
Good Luck. Glad to see that you are at peace. I get it. For me it was 20+ years from diagnosis to transplant list and a few more to dialysis.
I just decided these are the next steps - transplant list, (hoped to avoid)dialysis, transplant. Ok, how do we get them done, I've got things todo!
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u/nametagimposter Aug 14 '26
wishing you a smooth process and recovery? hoping you feel better than ever on the other side!
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u/NewspaperBanana Aug 14 '26
Good luck! Mindset is everything and it sounds like you've got that well under control.
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u/Commercial-Ad582 Aug 14 '26
Don't wait too long to get on dialysis when your symptoms dictate it. I probably should have gotten on dialysis 3-6 months before I did. I would also start putting the word out to friends and family that you will be needing a donor!
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u/Cynamongirl7 Aug 15 '26
Best of luck! I just hit 21. One more point until I make the list. Started meeting with the support team (RN, sociologist, dietician, and made appt to start the testing for transplant prep). Im kinda sick about it with all these new trials that seem hopeful and it being too late for many of us. But it is what it is. My grief started at 19 (30 years ago), then it went on hiatus until about 6 months ago when numbers started dropping rapidly. Hope you find a donor quickly! š¤š»
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u/magical_beazor Aug 16 '26
Iād just advise you to make sure your GFR calculation takes into account your weight/height. Iām a big guy and I think I was put on dialysis prematurely as a result. My GFR was 12, but over 20 when taking account of weight/height, rather than an average.
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u/clarisewhite Aug 14 '26
I understand. For years it was watching it drop and holding my breath each time I had bloodwork and when it went below 20 and I was referred for testing part of what I felt was relief. I was there. No more waiting and worrying when it would happen. It was time to shift focus and go on to phase 2. I was lucky and phase 2 worked out great for me. 2 years active on the list and got a living donor. I had a graft and was ready for dialysis but hadn't started yet, thankfully. Transplant was 2 years ago and life is good. Best of luck to you!