To conceive or not? Kidney disease Mums help please!

[AstroKate]

Hello
I've trawled Mumsnet (this is my first post-gentle, please!) and found loads of posts about cats and dogs with kidney disease (don't get me wrong, my cat was my life!) but not many from Mums.

I've recently been diagnosed with CKD Stage 4 completely by accident and in routine tests for other things. This came about as hubby and I were trying to conceive our first. I've had a biopsy and been told my GFR is 26 and creatinine hovering around 200. I've got high blood pressure and with tablets it's down to normal and proteinurea around 1.5g. The Doctors have told us to stop trying and we're waiting for a referral to a pre pregnancy specialist at Guys Hospital who can talk us through our options.

I've read lots of studies on effects of pregnancy on CKD4 patients (mixed-increased risk of miscarriage, premature birth, preeclampsia and decreased kidney functions post pregnancy). However, these are full of facts, percentages and probabilities.

I'm looking for STORIES. I can't find any websites for mums who have gone through it-what the experience was like and effects it had on you. We are trying to make a decision and balance the heartache of not having children with the risks of trying for a baby.

Is there anyone out there who has been through this?

Thanks
Kate

Hi Kate. Sorry - Don't have a story for you but thought I'd comment as dh and I have been ttc for 3 months and I have dense deposit disease (this affects kidneys so also classed as ckd). My nephrologist is not very happy at our decision but has agreed to support us if we do manage to conceive.
We've heard all of the scary statistics about increased risks of pre eclampsia, premature birth, low birth weight, possible kidney failure and thought long and hard about it. Ultimately we decided that we are willing to take a chance. It feels like the right choice for us.
Good luck with your appointment. I hope you get all the info you need to decide what will be best for you xx

Hi jelliemint thanks so much for posting!
You have no idea what a relief it is just to hear from someone in a similar place!

We are hoping for an appt very soon-did you seek advice from pre pregnancy renal specialists? My Nephrologist has been great and like yours has said he will support whatever our decision but has made it clear he doesn't think it's a good idea.

May I ask what CKD stage you are at (and please don't reply if you'd rather not say!). I'm sadly in that awf spot where they won't yet move to transplant but not quite well enough for things like pregnancy... So frustrating

Please keep me updated on your journey too-it's good to know there are others battling the same decisions we are!

I wish you all the luck in the world as you and hubby ttc xxxx

I'm not sure if this is relevant to you but is aw an episode of The Midwives on YouTube. There was a lady on there who had a transplanted kidney. The episode focussed on the issues she faced whilst pregnant.

Some of it was pretty scary stuff though so please be warned.

Hi Kate. My egfr is pretty good at the moment so I've gone from stage 3/ nearly 4 at the end of last year back up to stage 2 at last appointment 4 months ago. I still spill lots of protein though (regularly +++) which is why the nephrologist is still concerned about pregnancy.
You might find this link useful.

www.inspire.com/groups/nephrotic-syndrome-and-fsgs/discussion/pregnancy-with-fsgs-1/

It's for a forum for fsgs and nephrotic patients (so all kidney related stuff) and if you search the past discussions who'll find quite a few pregnancy related conversations which I found very heartening!

Let me know if the link doesn't work - I'm hopeless at anything IT related! :)

Or this link has some other interesting comments
www.inspire.com/groups/nephrotic-syndrome-and-fsgs/discussion/pregbancy-with-fsgs/