My fiance, his mother and sister have PKD
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.
Hello everyone! I'm new here and don't know exactly how these posts work, but I'm here to reach out for advice...I do not have PKD but my boyfriend was diagnosed months ago with "the worst possible case" of this disease...he's been sick for well over a year before he was diagnosed. for all of you who have it..I'm sure you can all sympathize with him. He's 29 years old. His father, aunt, and uncle...
Hi all,I wrote here about 6 months ago...i was very anxious and scared , diagnosed with pkd accidently (no symptoms)... my father was a very complicated case , died 2 years ago in 3rd transplant surgery(!). He had very big kidneys and very high blood pressure from young age.I feel better now mentally and Im optimistic.I'm 28.5 recently did an mri , my right kidney looks better than the left...
Hi Guys - not sure if you have read this before, but have posted about this on this forum earlier.The Artifical Kidney Project is all set to get into clinical in human trials early 2018! if all goes according to plan the device can be launched as early as 2020.I know this information is a big ray of hope for me. Initially, I didn't want to pin my hopes up on this project to be disappointed but...
So I will either have a egg donor or PGD done for my second pregnancy. Can anyone share with me their pregnancy experience? Does Kidney function decline post pregnancy. I am 30 years old, good kidney functions with Mild hypertension.I have a child who is 3 years old and had an uneventful pregnancy and no loss in Kidney function although I was 3 years younger.