My fiance of 9 years told me up front when we got together that him, his sister and his mother have PKD. I've done some fairly extensive research, been to some of his dr. appointments and have utilized other forums to ask about this debilitating disease as well as its many affects on the family and other everyday functions.
Within 6 months of our relationship, we found out I was pregnant and that's when more questions came up as you can likely imagine. When he and the OB/GYN told me the risks for our offspring having or developing it were higher than not developing it, I got a little more freaked out or scared. My fiance told me that his mother had just recently gone through transplant of one or both of her kidneys a few months before we met and that his sister was on dialysis cause her kidneys were failing to work properly, so she was looking at getting a transplant withing a few years as well. His prognosis is a lot healthier then theirs because he eats better then they do/did and he really manages his blood pressure and weight along with exercising a lot more wokring the job(s) he was working at when we met. He's only on a blood pressure medication with a water pill to help keep the PKD under more control, but he could one day end up on dialysis like his sister and his mother were/are. His sister recetntly (like withing the last 9mos give or take had to have her kidneys removed and is now dependent on dialysis til she stops smoking and or they find her functioning kidneys. She has lost a lot of weight and looks a lot healthier, but I do not think she has quit smoking yet and I'm not too sure about her eating habits either anymore.
What I'm concerned about here is the serious chances of our 8 year old daughter developing it. She does eat fairly healthy, but we restrict her on a lot of things and I'm thinking that when she gets to be more independent like when she turns into an adolescent, she may eat more of what she has been denied regularly to eat. We are already seeing that we have to remind her to drink fluids frequently and she does have a belly, but its not too much of a concern at this point. I would just really like to get feedback on what others have tried if the disease runs in the family!? Thanks.
I have PKD but my brother is clear. He has offered me one of his kidneys.What is the procedure to find out if he is a compatible donor? Do we need to be tested at the same time in the same hospital? (As I wrote in this forum about a month ago, Chinese medicine seems to be working for me. I'm hoping that I'll never need a transplant, but it doesn't hurt to get tested, I hope!)
Hi, I am 59 years old and was diagnosed with PKD in 1982. Myself and 3 siblings got PKD from my Dad's side of the family. His mother had kidney disease. It skipped my Dad's generation and 3 other siblings and myself got PKD. I was diagnosed with stage 5 on 12/12/2017 and have been on dialysis since 12/15/2017.I am scheduled to go for a consultation on March 8 for PD dialysis. I am...