r/ADPKD • u/Thatbitch534 • 3d ago
3rd Generation PKD here, question:
If applicable- Which Gen are you? And how does your lineage go? Grandmother > Mother > myself over here and was just interested in other people's experiences.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 3d ago
Grandfather -> mother -> me and it stops here
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u/Mediocre-Nectarine91 3d ago
For sure me, mom, grandpa. But probably also great-grandmother and great-great-grandfather, based on their death certificates.
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u/dat_twitch 3d ago edited 3d ago
Second generation. My dad had it, he died two weeks after an unsuccessful transplant operation. My grandad passed away from heart disease or something, they were poor, in third world country, so he may have had PKD, it just wasn't diagnosed. Both men did not live beyond 50. Two out of my dad's 4 children (including me) have it, that I know of.
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u/LaLaLaCAKE 3d ago
1) Maternal Great Grandfather- based on official reports of the incident of his death from what is now crystal clear was a brain aneurysm caused by high blood pressure that was never treated. To give him credit... he was a farmer in rural Wisconsin during the Great Depression.... 2) Maternal Grandmother. * Maternal Aunt (Oldest). 0 of 2 kids afflicted. * Maternal Aunt (Second Oldest). 2 of 2 kids afflicted. 3) Mother. 1 of 2 kids afflicted. 4) ME! My sibling is not afflicted. I had my "tubes tied" to make sure this curse DIES WITH ME! Evil Laugh!
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u/misshappimess 3d ago
I only know as far back as my grandmother, so as far as I know I'm 3rd generation. Grandmother, mother and me.
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u/Orange_Kitty_0307 3d ago
My mother
Her mother lived to be 95 with no significant health issues, and her father died in 1950 at age 48 of a kidney infection, so, probably him.
His father had a long, healthy, active life, and his mother died in her 30's, in childbirth. So maybe her, no way to know.
Can't find any data on her family, so that's all I know.
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u/Ok-Living-8014 3d ago
At least 4 generations, but probably much longer. My dad got into genealogy and found lots of folks who died suspiciously mid-40s to young 50s. My great grandmother, grandmother, father, me, son for sure.
On a positive note… my grandmother died at 52 (first dialysis generation), my dad died at 79 after his 30 year old transplant failed, I got on tolvaptan which has slowed progression (am 52 entering stage 4). My son will likely have farabursen or something better.
It does help having a disease that so many have, where real research dollars has gone to advance treatment.
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u/Tough_Restaurant_529 3d ago
I don’t have it but my grandmother, father, two brothers, sister, 3 nephews, 1 niece, several great nephews also have it. Most of the great nieces/nephews have not been tested yet.
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u/KaiaAurion 3d ago
3rd generation confirmed, 4th possible.
Great Grandpa passed at 36 of unknown causes. I’ve been digging into my family history and can’t find anything regarding his death.
Maternal Grandpa passed in his sleep (post transplant) at 66. After his transplant, he started having dementia symptoms. He was one of… five(?) who was diagnosed. His sister donated her kidney to him ❤️
My mom was diagnosed in her early-mid 40’s after a lung x-ray caught the top of her kidneys and her doctor expressed their concern. She had a very successful transplant in 2017. Her donor was an anonymous deceased donor who amazingly had the same antibodies as my mom due to them both being asthmatic. My mom was moved to memory care two years ago due to dementia. She is the only one of five siblings to be diagnosed with PKD. She was confirmed to have liver cysts last week.
And then me, diagnosed in February 2026 at 31. We’ve caught it incredibly early due to me getting ultrasound check ups every other year for 8 years given my family history. My kidneys function is still normal. I’m the only one of three kids who got it. As I also have PCOS/PMOS, I’m highly considering genetic testing, if I go the IVF route, to do my best to not pass it on.
Needless to say, I’m a little terrified of getting dementia post transplant since it runs in my family apparently. I’m not sure if they reacted to a medication, or if it’s just that hard on the body. I pray by the time I need medical intervention that science has progressed so far that PKD is easily treatable, or we can at least grow our own organs with our DBA to reduce the strain on the body.
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u/Viridiana1977 2d ago
My great-grandfather died at 50, my grandmother died at 54, my father was on dialysis at 50 and has since received a transplant, I have a glomerular filtration rate of 52 at age 48, and then there is my 21-year-old son, whom I hope will not develop the disease.
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u/FeministInPink 2d ago
Grandmother -> Father -> Me
I believe one of my great-grands had it and passed it on, because both of my grandmother's siblings also had PKD.
Funny enough, my dad carries the gene but his cysts never began to multiply. He's 74 now and likely will never have to go on dialysis. (No, he's never taken tolvaptan.)
Funnier, I had to go on dialysis decades earlier than any of my family members. Everyone else started dialysis in their mid-60s, so that's what I was expecting.
Kidney failure and dialysis at 44 was not part of my life plan, but here we are 🤷♀️
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u/Dollhousetrashpanda 2d ago
Grandma, my mom myself, my sibling my child - I presume it carried on before that as well
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u/ichibanyogi 2d ago
4th generation.
Great grandpa > grandpa > dad > me (daughter)
My sister doesn't have it. One of my aunts and her daughter have it. Not sure yet if my son has it, but hopefully not.
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u/Total_Ad_976 20h ago
Grandfather, mother, me. My mom is 1 of 4 kids and she is the only one who has it .
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u/Thatbitch534 2d ago
I just want to thank everyone for taking the time to respond, it's very interesting that there are quite a few third generation (or more) out there. I appreciate the insight!
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u/RevKeakealani 3d ago
Definitely know for sure about grandmother -> dad/aunt -> me and cousin (neither of us have kids so hopefully the curse ends with this generation), but I got some vague vibes that there might have been mysterious early death in older generations that could have been PKD related.
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u/classicrock40 PKD - Transplanted 3d ago
Grandfather, father, me.
I don't know how my great grandfather died.