Thinking of having a baby after 22 years with kidney can I get some advice plzzz

[jennifer24]

Hi everyone hope u guys are doing well , anywayz I have been with my kidney transplant for 22 years and I'm 34 years old and I'm finally ready to have a baby I know why now but I had been afraid even thought is something that I always wanted but when I was really young my brother told me that I would never have children beacuse of my kidney transplant. But years after had the courage to ask the dr ans he said that yes I could have kids thar it will be high risk pregnancy but I could thar I just have to plan it. Anyhow I'm ready now but my kidney function is down to 34 just recently this year when to stage 3b after I have on 3a since 2016 I take good care of myself but I'm afraid that because my kidney is too low the dr would say no. Can u guys give me some advice plzz

Thank you

[SN23]

HiJennifer24,

Congratulations. I am sure you are consulting your doctors and they will guide you through this. Sharing this NKF write up for now: kidney.org/atoz/content/pre...

And sending you blessings and warm wishes🙏

[jennifer24 in reply to SN23]

Thankz

[SN23 in reply to jennifer24]

Hope someone in the group who had a child post transplant (if there is someone that is) would share her experiences🙏 Warm wishes🙏

[jennifer24 in reply to SN23]

Thankz yea I hope so too that's why I asked to see ..

[WYOAnne NKF Ambassador]

None of us are medical experts on this site. I think you really need to talk to your nephrologist and get advice from the expert.

Best of luck! I am 23 years post transplant but am also beyond child bearing age.

[jennifer24 in reply to WYOAnne]

Thank u

[ThisAdventure]

Hi there, someone recently shared here about a group on Facebook for transplants and pregnancy. I can’t remember where the original post was but you might find the group helpful? facebook.com/groups/4133023...

I know I’ve found it helpful in looking at my options and understanding peoples experiences of pregnancy and the process after a transplant.

[tas1kubra]

Hey jennifer!

I am in a similar situation to you. I am at 3b, and recently relapsed from a partial remission - sad story, huh! I have fsgs, which is the number one reason for ESRD.

My doctors advise otherwise as well. I am married for 1 year and am 30 years old. We are arguing about this topic with my husband. He does not want to put my life at any kind of risk, but I want to have a kid in the future. Before or after the transplant - I just don't want to let my disease take this away from me.

I 100% agree with the comments, this is a decision you can take by advising your OBGYN and nephrologist. But from my side, all I can say is that just think it thoroughly and be prepared for a challenging -but I am sure rewarding- journey.

For example right now, when I relapse from remission, I need some time to recover from this. But during pregnancy, I should not be concerned about anything and be open and ready for any kind of obstacle. So aside from paying too much attention to your health, maybe also getting psychological help would be very useful in such a situation. Because even without a health condition, pregnancy is strong on nerves.

Please keep us updated with your thoughts and decisions. And I wish you the best in all world.

[jennifer24 in reply to tas1kubra]

Thank u

[MToQ]

I inherited my kidney disease and when I got pregnant, I was at CKD stage 3, not sure if a or b. I was 44 considered geriatric and high risk anyway. The specialist told me that since pregancy takes such a toll on your body that my kidney function might fall fast after the baby is born. But maybe not. Sadly, I had a biopsy a month after and I was already at only 24%. And then it just went down hill from there. 2 years later I was at 16% and started PD dialysis. My function just kept dropping until I reached 0%. I thought I wasn't going to make it and not be able to watch my child grow up. I also had a super high PRA 98%. I was listed at 2 hospitals. One told me 8+ years for a transplant. The other was more than 20+ because of my blood type. It was pretty the same transplant hospitals throughout the country.

I won the kidney lottery and received my kidney from a young organ donor that passed away from the flu. It's been over 4 yrs, my kidney is rocking. I adore my child and so very grateful that I can be with him and watch him grow and raise him. I love him to pieces. He is the best. We are very close.

But honestly, had I known that I would lose my kidney functions, be on PD dialysis and then have to get a transplant, I might not have chosen to get pregnant. It was rough and honestly, still is.

By the time I had my transplant, my PRA was 100%. I didn't know that until post transplant. It was a 3 point match. I am part of the 10% of transplanted recipients that are super sensitized and super immunocompromised.

I didn't have much support from the people around me before or after my transplant. Even though they all were told how a cold could put me in the hospital and kill me. I constantly had to ask folks to wash their hands, cover their mouths, etc. I totally gave up hugging and kissing anyone except for my child. And I am a super affectionate person by nature. Constantly policing family and friends was exhausting and folks did not get It. Then covid hit.

It was way easier the first year of covid. Mostly everyone followed the same protocols that I needed to follow even prior to covid. People started to practice hand hygiene and took precautions. Now the world is opening up again and it is still stressful. I got all my vaccinations, boosters and no antibodies. Got Evusheld and barely had any response. Plus I have classic fibromyalgia and sciatica. Chronic pain is no fun.

I still am very careful and my family has to be, too. Does not make me very popular. My son is amazing. He understands about the need to wear a mask esp. when he is sick and about maintaining hand hygiene. And is totally okay when I remind him when he forgets. He lives science and totally believes in science. Rest...well let's just say I still need to convince and remind and remind and ask and ask.

While I LOVE my child so so much... would I make the same choice again knowing that I won't have family support and only a few friends that kind of get it? And that there would be a pandemic? Honestly, I don't think so.

Perhaps you have the most amazing partner and the best and unbelievably supportive family and friends and matched living donors if things so south and sufficient funds to hire folks to help with things when no one else is available. Then it would be a no brainer go for it. The risk would be worth it. I love being a mom. I love the bonding time. I miss wearing him when he was a baby all soft and warm. He is growing so fast and learning so much. It's beautiful to see.

Otherwise, think about it some more and talk to your nephrologist and your partner and your family. Dialysis SUCKS. I did 13 hours a night. I am grateful for my transplant but it's not a cure. It could last 40+ years or it could reject after a few. Just some things to think about.

Good luck.

[jennifer24 in reply to MToQ]

Thank for ur advice u just have to be positive mines is gonna turn 23 years this month actually . My issue is that I don't want to wait till 40 to get pregnant or have a bb I see where u r coming from and understand at my kidney level that is now is not a good idea to get pregnant it could be a down fall for my kidney . It's very stressing to me and my husband I wish I could of gotten pregnant early when my kidney level was better but only God knows why it didn't happen either at thar time

[connecting]

One thing to think about, which might be controversial, but I'm just going to bring it up since my dr brought it up with me: if your kidney disease is genetic, you could pass it on to your child. So there's something to be said for adoption for folks like us who might be worried about our child inhering our condition (though, of course, just because the mother has a genetic condition doesn't mean the child will necessarily inherit it!). My dr also suggested that if I were set on having biological children, I could harvest eggs and hire a surrogate to avoid a risky pregnancy. Again, might be controversial, and I'm not advocating for any of these options necessarily, just letting you know what's on the table as far as what the dr told me. The dr was pretty hesitant about me getting pregnant even though my immunosuppressant dose is low, my kidney function is at 100%, and I'm young (early 30s).

[jennifer24 in reply to connecting]

Thanks for ur advice I been looking but one of those options u mention are really expensive I also im in a group on face of women who had transplants some including liver and kidney and had 1 baby some even 2 kids and everything when well for her and the baby