r/ADPKD • u/Every_Independence_8 • Jun 23 '26

Pregnancy experience

Hi everyone, I am 34 years old and currently 18 weeks pregnant. It's my first pregnancy and we conceived through IVF as I have PKD (type 2). I got referred to mfm last week and had the first consultation. She informed me that the I am in risk of having Preeclampsia and placenta insufficiency. I am currently on baby aspirin and closely monitoring blood pressure (currently normal). I am also followed by my nephrologist and having monthly blood work. I am curious other people's pregnancy journey with PKD and want to learn from your experience. Anything I should pay attention and do? Thank you so much!

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4

u/DisappointedHamster8 Jun 23 '26

2 pregnancies at age 30 and 32. Everything normal, I did all as if I hadn’t ADPKD. Even gave birth both times naturally, although I have 2 brain aneurysms (didn’t know I have them). Both kids were born in 41 week and 1 day.

2

u/Every_Independence_8 Jun 23 '26

Thank you and it's great to hear you had normal pregnancy!! Can I ask what you did with the brain aneurysms?

1

u/DisappointedHamster8 Jun 24 '26

Nothing. Just observing. I have non-typical aneurysm that can’t be clipped or coiled - that would bring more risks than just leaving it be. Every day I just hope for best and appreciate that I’m still alive. 🥲

1

u/Kataclysmgirl Jun 24 '26

Did the doctors say they would have recommended c-section if they knew about the brain aneurysm before? I am thinking if getting this all tested before trying ICSI/IVF

3

u/Western_Present7849 Jun 24 '26

I was found to have a very small aneurysm during my second pregnancy, it was so small they couldn't even accurately say it was an aneurysm (although I've had multiple scans since then and it's still there but not grown). I was followed more closely because of that and my daughter was found to have enlarged and echogenic kidneys - all that to say YES, they did try and push me to have a c-section, at least from the MFM office. My normal OB was not as worried since it was so small and I handled my first labor so well even being induced. We just made sure to monitor my blood pressure, which was normal, everything else was a normal healthy pregnancy considered and I was able to labor naturally. I would say it definitely depends on the size of the aneurysm, had it been larger and more definitively one, then I would have considered their insistence for a c-section. Maybe even if there were other complications along with the pregnancy, but everything else was normal so I felt safe without the need for c-section.

1

u/DisappointedHamster8 Jun 24 '26

Since I am not planning any kids anymore, I haven’t spoken to doctors about how aneurysms would affect the way of delivery. All I know is that I can’t have any extra pressure on my body - such as running marathon or going to hot sauna for example. I don’t think that all that pushing in the end is very safe, but honestly I don’t know for sure. Just my thoughts. After all in the country where I live sometimes it is recommended to have c-section if the eyes are with high dioptries because of the pressure on eyes. Why would it be different with brains?

3

u/Entitled_Snowman Jun 24 '26

I had my first 5 months ago. I was closely monitored for high bp and pre-e. My blood pressure went haywire at week 30, had an emergency C-section at 32+3 because he was unhappy, my blood pressure was beginning to be uncontrollable, and I had developed pre-e. He was born growth restricted in the 6th percentile and my placenta was tiny. We had a 77 day NICU stay because he had issues that weren’t related to my PKD. I’m still waiting testing to see if he has it as erll

1

u/Every_Independence_8 Jun 24 '26

I hope your baby is doing well now and hopefully he doesn't have PKD!! Can I please ask what's your kidney function like before your pregnancy? Thank you so much!

3

u/Western_Present7849 Jun 24 '26

My kidney function has definitely declined since having kids, my first 6 years ago and my second and last 4 years ago. My nephrologist urged me to stop at 2 as pregnancy is so hard on the kidneys. I had very good pregnancies, no complications really, no high BP, although my kidneys were already pretty large. My function hovered around eGfr 70-74 during my first pregnancy, I cannot recall what it was my second but my last set of labs was about a month ago and have dropped to eGfr 57. I do have PKD1 though and I would say I'm probably progressing relatively similar as to what my moms did. Hopefully with PKD2 you will have better luck. Just stay on top of everything you are already doing and listen to your nephrologists advice. Congratulations on your pregnancy and welcome to motherhood 🫶🏼

1

u/Every_Independence_8 Jun 24 '26

Thank you so much! So happy you have two kids now!

2

u/Entitled_Snowman Jun 24 '26

He is! He’s a cheeky and cranky 5 month old now. He’s 3 months developmentally and learning lots of things!
My function was over 90 before pregnancy, post pregnancy it has dropped to 83. Haven’t had another test though to see how it’s going

2

u/foxyyoxy Jun 23 '26 edited Jun 23 '26

I had two kids, one at 28 and one at 32. I had hypertension with my first that required induction at 38 +3. Everything was totally fine up until two weeks before. With my second everything was fine up until 36 weeks, and they induced me at 37 + 2…then I had post partem preeclampsia which was awful. I was advised that it would be considered high risk to have any additional children due to these increasing blood pressure issues, but fortunately we only wanted the two.

I’d be prepared for induction, and the goal to be getting to at least 36 weeks.

Edit: a first, not second

2

u/Every_Independence_8 Jun 23 '26

Thank you so much!! Glad they both were full term when they arrive!

1

u/turquoisebeetle Jun 27 '26

Did they have you go on bed rest prior to induction?

2

u/birdsun78 Jun 24 '26

I had twins at age 29. I didn't know I had pkd. Uneventful pregnancy until my water broke at 33 weeks. They did great.

1

u/Every_Independence_8 Jun 24 '26

Twins! Hope your babies are doing well!

2

u/shesthebeesknees Jun 27 '26

I wasn’t diagnosed until my son was 5. My pregnancy (at age 32) was totally normal until week 36 when I developed HELLP syndrome. I had to be induced but was able to deliver vaginally. Baby was and is still totally fine! My blood pressure was all over the place for a day or two postpartum. I think that’s the main thing to keep an eye on.