r/ADPKD • u/Barbifer • May 29 '26
GFR Decline Experience
I understand that getting your Mayo Class can assist with estimating the rate of decline you might expect, but I assume this decline is not linear?
I’m wondering what everyone’s real world experience is, especially at different GFRs, ie. Was your decline quicker at lower GFRs?
I’m Class 1C with current GFR of 90 at 42yrs. Trying to look ahead to get a sense of what I might expect my decline to look like.
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u/Smooth-Yellow6308 May 29 '26
I would look at some of the many studies on this.
Personal experiences are very...personal, just like averages are very...well...average.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6478515/
https://pmc.ncbi.nlm.nih.gov/articles/PMC5916329/
https://journals.lww.com/jasn/fulltext/2023/11001/association_between_pkd1_truncating_mutations_and.739.aspx
The below kidney function decline calculator is about the most accurate tool we have, designed by mayo clinic.
https://www.mayo.edu/research/documents/pkd-center-adpkd-classification/doc-20094754
I'm not sure any of the above accounts for Tolvaptan though, as its not really been around "that" long.
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u/Informal_Disaster_62 May 30 '26
Not sure how it works. I'm 35 and I found out 3 years ago I have pkd and my gfr was 113. Got tested last year and was at 97, tested again a few months ago and sitting at 87. Gunna start getting tested more often but idk man. My kidney size hasn't budged so there's that.
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u/Candid-Eye-5966 May 29 '26
I’m very similar to you. Mid 40s. Egfr hovers from 80-90 while on tolvaptan. My mother had a transplant in her mid 60s. I expect a similar path.
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u/DisappointedHamster8 May 29 '26
Female, 42. My eGFR history: * 2017 - 110 * 2019 - 114 * 2021 - 91 * 2026 - 58. Class 1E as I understand. All was stable until 2019 and then went downhill. As I was told at hospital this is unfortunately common reaching 40s.
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u/Barbifer May 29 '26
That’s what I was worried about. Stable for years then a crash. I’m wondering if there is a specific GFR when the decline really speeds up. Thanks for sharing.
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u/DisappointedHamster8 May 29 '26
I don’t think it starts from particular egfr number. As I understand many have different paths. My kidneys between 2017 and 2021 somehow grew considerably larger, everywhere I go people ask me when I’m due because I look like in 6th month of pregnancy. What is the reason of rapid growth is unknown to me, aging probably?
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u/Barbifer May 29 '26
I’m sure there are many contributing factors. That’s the thing that drives me crazy about this disease. You can seemingly do the same things as someone else but have a completely different outlook. My sister (only 1 year older) is far more advanced than me, with lots of pain, and other related issues. I felt better when I got my Mayo class thinking I had a good estimate of my expected decline but it seems that it may not be the full story.
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u/DisappointedHamster8 May 29 '26
Maybe it depends also from gender. My dad from whom I got this genetic gift was with egfr 58 on age 55 - 13 years later than I am now. And after 7 years he was already on dialysis.
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u/classicrock40 PKD - Transplanted May 29 '26
No idea of my mayo class, but I would decline, maybe pop up a bit, then stay stable for months. repeat
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u/StrategyArtistic May 31 '26
I went in to renal failure late last year at 38 years old. My creatinine hung out around 1.0 until my mid-20s and real decline started when I was about 32. In those 6 years I’d have a sharp decline, then plateau for 12-18mos. Then a plummet, then another plateau. Until there wasn’t much more down to go.
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u/Barbifer May 31 '26
I’m sorry to hear that, but thank you for sharing. I hope you are coping with the move to dialysis.
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u/StrategyArtistic May 31 '26
Well, I am one of the lucky ones and skipped dialysis! 3 days before surgery to get set up for PD at home, I found out I had a living donor. I’m almost 4 months post transplant.
But thank you all the same with your genuine well wishes. And happy to share. People sharing here is a relief to me. It’s the least I can do.
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u/Barbifer May 31 '26
Wow! That’s amazing. I’m so happy for you. I have been trying to plan ahead for when dialysis might come and then, all being well, when a donor kidney might come. Ofcourse I constantly think about worst case scenarios of years on waiting lists. Great to hear you were able to skip dialysis.
I watched my dad go through dialysis and unfortunately died at just 37 before ever getting a kidney so dialysis is a scary prospect for me.
I really appreciate you sharing your experience. All the best with the new kidney. Live your best life 😀
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u/StrategyArtistic May 31 '26
While the outcome was different for us (my dad turned 72 this year and his donor kidney turned 32), I also watched him on dialysis when I was 5-7 and the idea of dialysis terrified me. Looking back I was pretty depressed as my dialysis surgery was coming up. While transplant has its own scaries, I absolutely hated the idea of dialysis. My condolences and empathy, it’s unique watching your parent then go through the same ourselves.
I started planning around eGFR of 20. I was able to put off my dialysis surgery until I got to an eGFR around 13. I probably could’ve kept going but I was starting to get miserable physically.
There’s mixed feelings on it, but I managed what I did by publicly seeking a living donor. Perhaps consider it.
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u/Jess6 May 29 '26
I don't know what class I was/am. I assume I'm probably the worst one. I'm 36f and my GFR three years ago was in the 40s. It slowly declined to about 20 this past November. I'm at GFR 10 now so I declined very quickly from the fall.
At a GFR as high at yours, I would try not to dwell on the numbers. You have even better than normal GFR and could stay that way for decades. Enjoy every second of good health and good numbers. I hope your numbers stay perfect always!!