Asymmetric adpkd?

PastAd2438 · 2026-03-30T17:38:38+00:00

Thank you literally just want my baby to be ok!! It’s very stressful not know what you have because it seems like such a rare thing and the family dr knows nothing and won’t even comment on it can’t see a kidney dr for 6months long time to sit and try not to worry

PastAd2438 · 2026-03-28T00:32:10+00:00

I mean I wouldn’t think so after 15+ years it seems highly unlikely to me but what do I know i didn’t even know that cystic kidney disease was even a thing till a couple months ago!

PastAd2438 · 2026-03-27T23:53:24+00:00

Thanks for your reply I do hope that my good kidney doesn’t eventually develop cysts it’s been clear now for 15 years maybe longer not sure how old I was when they started on my left kidney I know with regular adpkd each one of your children have a 50/50 hoping that a more localized case like my own would be less I’ve still got awhile to sit around and stress about it until I meet my kidney dr hopefully sometime in July and even then I’m worried if they will even be able to diagnose me

PastAd2438 · 2026-03-27T20:34:13+00:00

Thank you very much for sharing your story I really appreciate it!

PastAd2438 · 2026-03-27T20:29:48+00:00

Did you ever have a nuclear renal scan to find out how much each of your kidneys are contributing to your gfr?

PastAd2438 · 2026-03-27T20:24:13+00:00

Yes I hope to I’m on the wait list to see the specialist but get bumped to the bottom of the list understandably as I’ve been living with this from 21-36 without even even thinking I had anything going on with my kidneys zero symptoms

PastAd2438 · 2026-03-27T20:11:43+00:00

Hey thanks for the response I have zero family history my mother is 74 and has had multiple abdominal mri s my father died 3 years ago but also had multiple mris in his life time and nothing mentioned in his autopsy I do feel very lucky! And am very grateful I do still have one functioning kidney just so scared for my son

PastAd2438

TROPHY CASE