I have had pkd since I was born in 1995 and on my second transplant now from my father in 2016.
I was wondering about people with pkd and anyone that has gone on to have kids? I am 29 now so I would like to realistically think about it soon but worried about complications or damage to children/kidney’s during pregnancy.
I would be greatful if anyone could reply with their thoughts or own stories on pregnancy and having pkd. I feel worried about the future and uncertain if I will ever have kids with this.
thank you
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LouiseFrancis
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Hi! I don’t have any experience with what you’re asking about. Wish I could be of more help - I understand that these are tough decisions. There is a UK website that might be helpful - but I guess the main advice is to talk to your doctors about this..
Hello, I've had ADPKD for as long I can remember. I haven't made it to the transplant stage so I won't have the same experience, but my kids are in their 20's. It's best to talk to both your nephrologist and an OB/GYN to get all the information you can.
As PKD is genetic there is a good chance you can pass that on to your kids (I did). Having a baby and being pregnant is the most natural thing in the world, but it is really hard on your body. Babies take up a lot of space and press on everything else to make room in for themselves. I going to guess a pregnancy, at a minimum would be quite uncomfortable. Really discuss with your doctors before you make that decision.
Some ladies with kidney transplants do manage to have babies - those pregnancies require extra care and adjustments of meds, of course. I agree with everyone here that it's best to consult your transplant team to determine what is possible in your case. I'd like to add that with modern science it's possible to have children in myriad ways - naturally, adoption, surrogacy, and more. (I have a family member with a major health issue who used the surrogacy option. I believe her fertilized eggs were generally genetically screened before implantation.) Where there's a will, there's a way! Arrange a nice chat with your doctors and see what they say.
I have pkd and had children before my kidney transplant, which took place shortly after I turned 35. I had preeclampsia with my first child, which did damage my kidneys quite a bit. Preeclampsia is more common if you have PKD. My kidney function was very good before that pregnancy, but took a significant hit. However many of many family members had children with PKD and did not experience that. My older sister has PKD and has one child, and has not needed a transplant yet.
Transplant does add another risk, and you need extra monitoring and to make sure to be taking pregnancy safe anti rejection meds. Many people have gone through it safely, but obviously there are cases where it did not go as planned. I personally decided against it. I did really want more children, but since I already do have children and my husband is not comfortable with the risk, I decided against it.
There is a Facebook group you can join where women discuss their post transplant pregnancies. That would be a great place for you to get more information and ask questions.
If that link doesn't work let me know. Hope it helps you!
I am curious, if you don't mind sharing, why you needed a transplant so young for PKD. Mine was needed much sooner than most people with PKD, so I am curious what happened in your case. I don't know yet if my children have PKD, but any knowledge of each other's experiences is helpful!
You are among many people i feel that have had your kids before having a kidney transplant which is great! Obviously theres a risk of them carrying PKD but I suppose its all part of the journey and complications associated with pKD.
My case is very rare and in 1995 when i was born with kidney failure the doctors were very worried about me but luckily i had my first transplant at 2 years old. Obviously i’m still quite young to be on my 3rd transplant but i think thats why kids has always been a massive question mark for me.
Thank you for sharing your story and putting that link, I will check it out 😊
Hi , I was diagnosed with PKD age 44. I went through a pregnancy age 32 (identical twins) not knowing about my condition. I was very poorly having them at 30 weeks. I had severe pre eclampsia. Up until 28 weeks i was fine, just monitored for high B/P. I was surprised my condition wasnt pick up whilst pregnant!!! I had a emergency cesearean . I picked up quite quickly, whilst my children were kept in SCUBA for 7 weeks. (only due to prematurity). They are now 29 and very healthy. I believe maybe i lost some function whilst pregnant. GFR 60. my function now 20. One of my twins has recently been tasted for PKD and was clear 😊. This means his brother should also be clear.🤞. So things have worked out ok for me I know having a transplant, may give you more complications, but i was told if i was to have more children i would be closely monitored. I wouldnt be without my boys. So good luck with your journey
Thank you for sharing your experiences with pregnancy and especially the carrying of your babies. I’m sorry you had to go through that, but glad it has ultimately worked out for you, that’s great. Funny enough i am also a twin (brother) but he doesn’t have any kidney issues ha!
What you are saying about the GFR worries me alot actually and something I hadn’t thought about but my GFR is around 25/30 now so it may be time to look at other options.
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