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.
Hi everyone.. Do any of you have muscle cramping as you approach(ed) Stage 5? I'm probably at around 13-14 GFR now, and am starting to get some recurring cramping - especially feet and ankle areas. It's not chronic, but starting to be more than just a fluke cramp here or there I think. Just wondering if this is something that is common.Thanks,Steve
hi, I am 16 and was diagnosed with PKD 3 years ago. I've always had mixed feelings about my diagnosis. On the one hand, i have seen what several of my family members have had to go through with dialysis and transplants. However it doesn't feel real because I have no symptoms. I had an ultrasound recently, and seeing the cysts on screen was hard to experience. I joined this group because I wanted...
Hello all. I'm looking to connect with others for support in helping my husband manage issues around PKD and deteriorating health. We have been lucky to be rather symptom free, but more recently things have started to decline. He found that his function is down to 20% and we are looking at likely needing dialysis or transplant in the next year. Since this time he has felt more fatigued and...
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...