Polycystic Kidney Disease

[Thistlelass]

Interested to hear of any experiences please as it is looking as if my DIL is going to be diagnosed.

I don’t know much but it ran in my mums family, her mother had it, it skipped my mum, my uncle had a transplant in his late 40’s I think. All the children and grandchildren were checked for it - I think only 2 out of 11 inherited it, with no symptoms so far. They are only supposed to drink alcohol in moderation, and keep weight down.

I understand it is a 50/50 chance her children would be affected. It's as many toxins as possible you need to eliminate.

Hi, my husband has it, was diagnosed a few years ago. Buried his head in the sand for a few years, this week reality bit and he is on medication and has been told he needs to make lifestyle changes. He’s just turned 51, is overweight and its suddenly hit him. He’s on a big downer about it. He doesn’t know who his bio father is other any other family history of it. Hope we can keep this thread going to sound off and compare notes. I am going to support and police these lifestyle changes 😬

My grandfather had it and had a transplant at some point. It did eventually kill him but he was in his 70s and this was 25 years ago so he probably would have reached normal life expectancy nowadays. It did of course impact on his life, especially the period where he was on dialysis before the transplant. However they got a portable dialysis machine and a camper van and travelled Europe. I get asked about it by doctors occasionally as it is on my notes under family history but no one else in the family seems affected.

Bit late to this thread but I have it. Currently have stage 4, with eGFR of 22. Rapidly heading towards the transplant list at 40.

It's supposed to be 1:4 I think of being hereditary but so far through our family it's 100%. My DF and his sister had it, DB and I both have it and both my cousins have it. Currently debating whether to get DC genetically tested or not.

Happy to answer any questions you may have.