Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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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.

Replies

nicky73
nicky73

Hi there
I think the most important thing for your daughter is to have a healthy lifestyle and I would suggest to check her bloodpressure regularly even at this age. It is thought that children with PKD can already have (asymptomatic) hypertension and if that's the case treating hypertension will postpone the deterioration of kidney function. Chances are 50% that she has it. I found out in my twenties that I had this disease. I had problems in pregnancy, severe hypertension.
If she has not the disease it is also good to have a healthy lifestyle.
I just found out my eleven year old son has it had well. He has hypertension. Today we went to see the nephrologist. His blood pressure was 130/78 while it should be 100/60 at his age. He will get medication probably. I am very sad about it but try to learn him that life is not over with this disease, but it is definately more difficult...
Regards Nicky
enigmaticloner
enigmaticloner

Well, about your child developing it, that's very unlikely. It's something you're born with, so since you know about it being a possibility have you gotten her checked yet? That's' the thing to do as soon as possible so you can know what things to avoid giving her. I didn't find out I had it until I was 16 but I'm still not even sure who in my family has had it in the past for me to be born with it.
Chewitt
Chewitt

Hi there,

My kids are older teenagers now and there definitely comes a point when you lose control of some of and eventually everything that they eat and drink ( an do!) you can't actually do anything about that except continue to give good examples and advice. Hopefully they retain the teaching that you've provided and come back to it at some point if they stray during these years.

With regard to diagnosis, it is sometimes possible to diagnose the condition when very young, but just as likely is that it can't be detected on scans until later. A negative diagnosis means nothing until after age 40. As Nicky says, it's good for everyone to live a healthy lifestyle, so just keep promoting that message.
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