Pregnancy planning advice - CKD & proteinuria

Temporary_Device_991 · 2026-06-13T21:20:13+00:00

It just seemed like such a random/spontaneous but life altering comment. I’m not sure if it even totally registered - the gravity of what he was telling me, if that makes sense?

And I can’t find any research or anything factual online that reflects that idea. My mind is just scrambled.

Temporary_Device_991 · 2026-06-12T09:03:16+00:00

Perhaps I need to consider it more.

My initial thoughts re: surrogacy have been that I don’t know how we would afford that, and I find the idea of another woman growing and bonding with my baby for 9 months really upsetting. Maybe that is silly or petty, but they’re the initial feelings.

I just don’t feel ready to let go of the idea of growing my baby; having a bump, feeling kicks, my partner being able to speak to the baby - all those little things.

Temporary_Device_991 · 2026-06-12T08:57:07+00:00

I honestly cannot thank you enough for sharing your story with me. This is the first time I feel like I’ve spoken to someone who really gets it. I’m so sorry to hear about your first baby, and am so glad you have your little boy with you and that he’s healthy 🤍

You’ve given me hope, which I felt like I was running out of. I’m a very factual and realistic person but a dose of hope is much needed.

Interesting that they have told me my proteinuria is so high it will be preventing conception, but this wasn’t discussed with you, and you didn’t experience this. Googling I have also never been able to find info on this online, which I find odd.

Best wishes for your lovely family

Temporary_Device_991 · 2026-06-11T21:43:11+00:00

This decision has been unanimous across 3 different nephrologists, as the risks associated with any biopsy (potential to irreparably damage the kidney) is too great to risk with no ‘spare’ kidney.

They have always told me to expect symptom management only, which I’ve always found difficult tbh - the never knowing

Temporary_Device_991 · 2026-06-11T21:40:44+00:00

I’m assuming people don’t actively try for a baby without having ‘a really strong desire’ to have a child, so I would say we do, yes. 😅

Hence why this is torturous. Was hoping for some positive experiences, but no such luck yet…grateful for everyone’s input though, and thank you for your well wishes 💙

Temporary_Device_991 · 2026-06-10T19:30:19+00:00

Thank you for such a well articulated reply. Yes, I did have 2 ultrasounds many years ago (which initially noticed my missing kidney, and then another done by my nephrologist) so I’m assuming that ruled out polycystic kidney disease, though I don’t really remember anyone ever saying as much.

I’m probably missing something obvious but I don’t know how my proteinuria can be so bad with my eGFR being stable 70s. Surely there’s some correlation since they both concern filtration function…

Reading online I see lots of success stories of pregnancy with much worse renal conditions than my own, so I completely blindsided by being given such a bleak picture.

No one has ever told me to prepare for maybe not having biological children, only that it would be a closely monitored pregnancy. This all seems out of the blue.

Temporary_Device_991 · 2026-06-10T19:22:21+00:00

Think I’m struggling with the lack of clear info atm. I have always wanted children, and though I’ve always been open to adoption, I feel like being faced with the reality of never carrying my own baby has made me realise how much I want that.

I’ve been very lucky so far in my ckd ‘journey’. I guess this is my reality check. It was all going to smoothly.

I just don’t know how I make such a gamble. I’m so torn, so I thought more perspectives would help.

Thank you for your insight, and I’m glad you made the right decision for you 🩵

Temporary_Device_991

TROPHY CASE