xp: kidney failure? polycystic kidney disease- pls help

melissa-n-paul

Anyone know about polycystic kidney disease? The past week has been a blur to me and Ive cried and slept more than anything. Im 26wks with our second child and basically to make a long story short the dr (perinatal) found that our baby boy only has one kidney and it has cysts on it- the other kidney wasnt visable on the ultrasound. There are no other indicators at this time that its chromosone related so he is suspecting its PKD. If at any point my fluid goes down, which its already low, they would assume he is in kidney failure and wouldnt live. There are options for dialysis but at this point the dr didnt say much about what we could do to save him but basically it was up to us how much intervention we chose to do. Regardless, its a wait and see sort of thing now- Im just wondering (I dont go back to the dr until next week) what else could cause cysts and if he only has one kidney if the cysts were just some random simple cysts that were non genetic if he could survive? Just looking for anyone who may have heard of this disease before or know anything about kidney problems/cysts? .. Even if its bad news- Ive read alot online and from what the dr explained it wouldnt be a good outcome if he had kidney failure before my due date or even if it happened after he was delivered. He never said what else it could be, just that it wasnt chromosonal at this point and that he wouldnt know until/if when my fluid decreased or when he was born and they could do CT/MRI, etc.

SoulChild

I dont. But understand what you are going through as I am high risk as well. Thoughts and Prayers. ((HUGS))

kimberlyd546

Im not too familiar with PKD in infants, but I myself have the disease and was diagnosed when I was 16...if you have any questions or just wanna chat send me a pm...my thoughts are with you and your family.

hummingbird1028

PKD runs in my family my grandfather had it, my mother has it, and so do both of my siblings and myself.  There are 2 different kinds of PKD and there are a few websites out there they may help answer your questions a little better than I can.  T&P for and your family

lnoll

I'm 38 weeks pregnant and my baby has ARPKD.  We found out at 27 weeks.  I know exactly how you feel and what you're going through.  It's absolutely horrible and no one else can relate.  I'm so sorry you are going through this.  Feel free to email me at lschwartz531@gmail.com if you want to chat.  I also have a blog with tons of info at www.stephens-journey.blogspot.com

I hope to hear from you!