Polycystic Kidney Disease (PKD) Support Group

Patrick,

It is a personal choice that only you and the mother of your children can make to be honest with you. There is genetic counseling available for parents with PKD in helping them decide if they are struggling with that.

Everyone is going to have their own personal opinion on it, of course, but in the end I believe it is the parents' decision.

And to answer your question, yes, people do still choose to move forward with getting pregnant. I'm here. ;) And there are a lot of parents with PKD on this forum....I'm sure they'll jump in with their replies soon. :)

I wish you the best and really look into the genetic counseling....it couldn't hurt, right?

Take care.

I didn't discover that I have PKD until my eldest child was 9, so didn't have to make the decision. I really don't know what I would have done if I'd known earlier (I have no family history of PKD). I'll be very interested to see what others say, as my children may be in the position of having to make the decision one day (though hopefully not).

I always figured that despite my pkd, I don't regret being here on earth...and I hoped there would be a cure if I did have child with pkd. It turns out I was unable to have a child (after years of infertility treatments). I adopted my son and am glad he doesn't have that health history, but I think it is a very individual choice. My sister has pkd too and has 2 kids. Time will tell if either of them have the disease. But even if they do, I personally believe their lives are worth living. one thing to make sure of though is that your spouse doesn't have the disease, because if a child inherits 2 pkd genes the result can be devastating, and can cause death in childhood. That, to me, would be a reason not have a child.

Rick, remember that PKD is not a death sentance, people can live long, happy lives with the disease ... no t to mention, WHO KNOWS where medicine will be by the time your child is diagnosed.
I have PKD, found out in January ... and am pregnant with our first baby

I agree with the others... it's a personal decision. I found out in September of '08 that I had PKD... I had never even heard of the disease and have not yet found a family history. I have one child who is 3 years old and am pregnant with baby #2 due in June! In my opinion, not continuing to grow our family would have meant that I would stop living life because of the pkd diagnosis. If you really want children, follow your heart! Hope this helps........ smiles, Dawn

Im 36 and I found out I had PKD when I was 14. Ive always dreamed of having children. My husband and I have been together since I was 14. Us having children with PKD was thought about but wasnt an issues. I have 3 sisters and 2 of us have PKD and 2 of us dont but we all have children. My oldest who is 10 had to have a sono done because she was having alot of yeast infections. She has officially but unoffically been checked for PKD - basically she was tested but its not documented in her charts. I dont know if my 7 year old has it or not but I wouldnt change either one of them. PKD or not we will cross that bridge if we have to. I couldnt imagine my life without my girls. With that being said. Being pregnant was hard on me and caused some problems like High Blood Pressure. My sister who has PKD didnt have complications like I did. Having children is a very personal decision. Take your time and consider all your options. Good Luck!!!

My husband and I had that tough conversation almost 10 years ago. He had decided by himself he didn't want children, which I believed was unfair to me who wanted them. Ultimately we decided that it isn't our decision to make. There is a change that you can pass anything even a recessive trait for something else. Our doctor told us not to mark it on his-our son's history. However, we do mark it. I hope with all my heart my son doesn't have it, but "one bridge at a time!" is a motto I've adopted during this challenging time.

Good luck with your decision!

I asked myself this question a thousand times before we tried to conceive. My doctor (not a kidney specialist) was really doom and gloom about it. She told me I would be risking my health and the health of my baby if I became pregnant.
For me, NOT having children has never been an option and it was difficult to hear my own doctor telling me I shouldn't proceed with trying to conceive. I sought the advice of a nephrologist and a perinatologist - both told me to go ahead and try to conceive. We did and I'm now 6 months pregnant. So far I have had no problems. We will be trying again quickly for a second before my kidneys deteriorate.
It is something that only you and your partner can decide between you, but I don't feel so bad about knowing there's a 50% chance of passing it onto my child. By deciding not to have a child purely because of PKD, it's like saying I shouldn't be here either because my parents shouldn't have had me. Yet my quality of life has been 100% so far - there's no reason why my child shouldn't go on to have the same quality of life. Hopefully one day there will be a cure, but in the meantime, I would rather have PKD than many of the other diseases out there. That's just my opinion though!
I hope you come to a decision that is right for both of you x

my father, grandfather & uncle had PKD, but I DO NOT, as well as do NONE of my cousins...1 uncle had a transplant & my father is due for his in June, but if they did not have their children...that would be 6 people in this family that would NOT have been here...I don't really consider that to be a reason NOT to have children! if you want kids...just raise them and love them as best as you can...that is what GOD is looking for...and if you do have kids...well...GOD's hand is in THAT too!

I have three fab kids whom we love dearly I had trouble free pregnacies and did not find out I had PKD until my youngest was 5, I would not change a thing, my life has been great so far and apart from a few blips recently I am pretty confident that it will carry on been pretty full, as will my kids PKD should'nt stop you living the life you want you may just have to accomodate it occassionally, I think you have to be positive. Have had three weeks in hospital over the last year thanks to PKD but I still work, go on holiday watch my kids at sports and plays etc. I can't imagine life without having the kids they are such a source of every emotion our live swould be empty without them. Go with your heart and good luck.