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xp: kidney problems/failure
I posted this on the high risk board, but just curious if anyone here had any expirence with it too... 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 one hasnt been visable on an 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.
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Re: xp: kidney problems/failure
Hi melissa-n-paul,
You've brought me out of lurkdom. I'm so sorry you're going through this with your lo. I'm not sure how much help it is, but I know of a girl who was born with what they've shown on your ultrasound. I know that not every case is the same, and maybe when your doc is able to give you more info, it may be more reassuring.
There are two articles on her and her story, notice the dates. My son (who is in one of the articles) saw her two weeks ago. She just turned eight. My ds is 13 and 8 years post kidney transplant, and has been through a lot as well. If it helps, feel free to pm me.
https://www.kidney.ca/Document.Doc?id=403 Read Emma's story.
https://www.rein.ca/Document.Doc?id=407 This was a follow up.
Hopefully they'll put you in touch with a pediatric nephrologist who can outline your options. T & P's to you, your family and your lo, and I'm hoping your next appointment goes well. Hang in there!