Polycystic Kidney Disease (PKD) Support Group

I have PKD and have 2 kids. They are now 10 and 13. I have had no effects from the PKD and my pregnancies were normal. You would be considered "high risk" probably from the start and should watch your blood pressure and drink a lot of water to reduce swelling. The one big factor it that you have a 50/50 chance to pass this along to your child. Something to consider when dealing with any 'genetic' code you could pass along.

Best wishes and I hope you find peace in whatever decision you come up with.

Thanks for your input, msalice! Sounds like you will bring alot of great info to this support group. My husband and I really wanted a big family... I don't think we'll have 4 like we always planned... but hopefully one more. If it's meant to be, it will (or has already) happened. I look forward to getting to know you and thanks again for your thoughts on the subject! ~dawn

I have PKD and 2 girls now ages 5 and 2. Both pregnancies worsened my condition, instead of what I thought was going to be 20 years till I recieved dialysis it is now only 1. I am 33 and keep really healthy. I am lucky not to be suffering any aches and pains. Your doctor is right though, have your second child now rather than waiting later, I feel the younger you are the easier it is to cope with.

I did not get any symptoms and had no idea of the family history till way after I had my five children .So I was lucky to not have to deal with this issue .As far as I am aware the progress of this disease varies so much that they can really have no idea if it will really have an affect ,certainly for me it did not.If your doctor says its ok go for it ,now better than later for sure.

Hi! I am currently pregnant with my 2nd child and have PKD, with a very long family history of it. My nephrologist told me before I got pregnant the 2nd time that if I was planning on having more, I'd better do it QUICK! When I did get pregnant and saw him again, he said that this really has to be my LAST pregnancy and that I'm lucky to have gotten pregnant in the first place. FYI, I am 30 years old.

I am currently in my 5th month of my pregnancy and it has been uneventful thus far, although at my 20 week check up, my blood pressure has begun to rise. The same happened with my first pregnancy and I was put on bed rest about my 7th month due to my bp. I am considered high risk because of my PKD and hypertension. I do have a bigger belly than most almost 6 month pregnant women, but my nephrologist confirmed that it is due to the size of my kidneys and the growing baby pushing everything out.

I think you should talk to your doctor! So far so good for me, although it will be my last pregnancy. GOOD LUCK!

Thanks so much, ladies, for your messages. It means more than you know. I can honestly say that if I had not found this support group, I would probably be a complete wreck by now. This is the only source of consolation I have found since being diagnosed. (Well, besides family and friends... but they really don't know how I feel inside, if that makes sense.) A HUGE THANK YOU. MUAHHHH! Dawn

Hi I'm 21 and I was told at the age of 19 to have kids sooner rather than later. At the time I thought they were being a bit pushy as I didn't want kids so soon. I'm about to start my 3rd year at uni and I can't wait to finish so I can get a job, house etc. I have an amazing boyfirend and we have always wanted children. I spoke to my specialist last week about it as I have heard about complications from the pills I take and was worried about the effects on pregnency. He insisted that we have children within the next 2/3 years.
I never realised just how soon they meant when I was just 19. Is this the sort of things you have been told too? Or was my doc a bit over the top??

sounds like your doctor is over the top. of course I don't know your particular condition or stage of PKD but generally speaking there is no need to have children in your late teens or early 20s.
there is always the option of a second opinion and I'm surprised more people don't use that.
there have been several posts recently (you are responding to a post a year old) on the subject of pregnancy but nobody seems to have been given the advice you received. read the latest messages to see if any relate to you.

I agree... the doctor may be a little over the top. I not only reached out for a second opinion from another nephrologist (whom I ultimately switched to), but also from my internal med primary dr., my obstetrician and a gyn specialist. All gave the complete blessing to go forward with conceiving baby #2 as my function is still normal, low bp, and no noticeable side effects from the pkd. I am also 35 years old...

I agree with the previous poster, maybe consult with another doctor for a second or even third opinion. Good luck with your choice and enjoy LIFE!

Smiles,
Dawn aka beachlovingmom

Thanks for your advice. I thought he was over the top and even more so after reading several posts on forums from people who have been there got the t-shirt etc...