Pregnancy with stage 4 kidney disease - Dialysis Support

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Pregnancy with stage 4 kidney disease

fashiongee profile image
12 Replies

Pregnancy with stage 4 kidney disease

I Have had stage 3 for a number of years, we decided to try for a baby at the end of the year, and i have spent the last few months trying to get my body in the best condition possible. loose wait etc.

But very recently I have found out my kidneys have got worst i’m now at stage 4 blood results GFR 19.

creatinine 247.

My renal doctor seems to think If I do get pregnant I have a one in 3 chance of moving to stage 5.

I would really like to hear from ladies who have been in this or similar situation, I’m very confused.

I always wanted a baby I’m only 37 Help!

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fashiongee profile image
fashiongee
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12 Replies
chester169 profile image
chester169

I had two children and I have polycystic kidneys they just monitor you more but any children you have there is a 1 in 2 chance one of them gets it.

fashiongee profile image
fashiongee in reply to chester169

Thank you I will ask about that, I didn't know that could happen

chester169 profile image
chester169

Let me know how you get on.have you got pkd

2012kowboy profile image
2012kowboy

Hi fashiongee, although I am not a lady myself it might be worth checking out our website as we have a lady on there who has had children whilst on dialysis, I hope this helps you and you find an answer. Good luck.

All the best from

renalbuddies.com

fashiongee profile image
fashiongee in reply to 2012kowboy

Thank you I will take a look.

MimiRahel profile image
MimiRahel

Dear Fashiongee,

I was wondering if you could tell me as to what happened to you I mean did you in fact get pregnant?

Well I have stage 4 kidney faluer I am 32 and really want to have a baby so I was wondering if you give me some information.

I was preanant before my kidney had failed but I had a miscarriage and due to that I went to what they told me peptic some sort of inaction I almost died I had to spend over 10 days in ICU and almost a month in hospital my kidney was at stage 5 then they put me on dyalisis for few months then it went up to stage 4 and it has been almost two years now.

Please I need help if there is anyone here could help me with information.

Thank you.

fashiongee profile image
fashiongee

Hi,

It's a tough decision after many sleepless nights my partner I decided not risk a pregnancy. It's a personal decision but I could not risk my partner having to decide between me and the baby, he would be spending his time running from ICU and neonatal department as we were told baby would be very prem, and how could we have looked after the baby when I was trying to get my head around dialysis? But you have to do what's best for U.

I'm am now at stage 5 and on the waiting, I've got a new consultant who understands I want a baby, when I get a new kidney I can have a baby and the pregnancy will be much easier, so I will wait for my kidney, if its not to be then I have made peace with not being a mother( still hurts) but gets easier with time.

I spoke with friends who don't have children some through choice other because they have medical problems, they all told me the same thing, you will a great live without children, its just a different life.

Good luck let me know how u get on

Gee xx

MimiRahel profile image
MimiRahel

Hi,

Thank you ever so much for taking the time to replie to my questions. I hope you get your kidney soon so you can have you baby. Well I am not sure what I would deside but it defienetliy helps to hear from you who had been to the possess.

The thing is I am not even sure if I had a axcepted my kidney failure yet and it's been two years

I was so dipresed for as log as I can remaber I didn't have anyone to talk to until this day I really don't want to go out side the house at times I could be home with out going out for a months.

It don't help the fact that all my friends have children so they wouldn't know what to say to me.

If I decide to get pregnant well even it works out and I have a baby there is 99% chance my kidney will go down to stage 5 which means transplant and since I am black it would be impossible to get a doner and when I was on dayilsis I was sick everyday I couldn't keep anything down.

I guess I have a lot to think about thank you so much.

Mimi xxx

fashiongee profile image
fashiongee in reply to MimiRahel

Well here is the thing, I'm black too! They don't make it very clear but u don't have to receive a kidney from a black donor.. Its more to do with your blood group antibodies etc, my best chance of a live donor is my partners mum who is white, our blood type and antibodies are a good match, she is being tested to see if she is fit enough to give a kidney, so don't give up hope, the docs have said its better to have a 'live' white donor than a black deceased donor. Don't give up hope, I still work full time and I have a 50mile drive round trip to work, I'm a retail manager so I stand most of the day, I get days when I don't want to leave the house, and I let myself have those days, but when it feels like I'm overwhelmed i think about how one day I maybe too ill to work, or to get out of bed, i don't want to wish I had done more with my time.

Its not easy sometimes I'm so tired I cry, cos it feels like my body can't take anymore, but like I say I rest/sleep and tomorrow is a new day.

Counseling is always a good option if your having more down days than up....never give up on yourself, Im guessing u have a partner, as your thinking about a baby, support is your key word here, use it

Take care let me know how your doing

Gee x

MimiRahel profile image
MimiRahel

I wasn't aware of that at all the doctors made seem so hard wich I am not saying would be is because they never put me on the list because I am only stage 4 and not qualified for it which I am so greatful for.

I am not working the thing is I use to work with children in nursery and schools I don't seem to get over the hole thing and most of all Its so tiring as well running around all day I couldn't manage doing that going up the stairs almost stops my heart bit. You deffinetliy are a very strong and postieV person I admire you👍

I do have a husband who is so caring and supporting but the problem is me I can't seem to get my head around the hole thing.

I shouldn't have been sick it's all the hospital fualt really u went there with some discomforts and bad pain to my stomach they admitted after hours of waiting my pregnancy was already a high risk because I had already miscarried once before but they never listen to my complaint of pain countless time I had been to the emergency room once before this happened but they sent me home also I have been to the scan few times to see if all was OK because I kept getting this weird pain but my doctor was too busy to see me he was specialist who was suppos to be taking care of me.

12 weeks scan was a little painful because they couldn't see the measermant they had to push my belly so hard I actually start spotting blood I was asked to walk around and come back which I did then they scanned meand baby was ok.

But I had to go for emergency assessment the same day right after u was dine with the scan and the doctor see my cervix and she told me it's closed and fine the posting and the pain might be the push from the scan she wasn't sure.

My doctor was meant to put stich at about 14 weeks but when I went to my appointment he wasn't the one who saw me was some lady I don't know and who wasn't aware of my case whatsoever but I did explain to her about my case she told me she would go ask him and she did while I was in the examining room but when she get back she told me not to worry about it and just go to my 16 week scan I was so worried but no one would listen to Mt at all.

I went to the midwife with some pain but she listen to the heart bit and told me everything was ok and I went to the hospital at 16 week with the pain where I was admired.

My so called specialist came to see me after 4 days in hospital all that time I was asking to see him but he was too busy to do so they kept telling me I should just take this pills to end the pregnancy because it's not going to make it they said by that time a little bit of the fluid was leaked I wouldn't take the pills before I see the specialist which I did after so long but he said I should be scanned the next morning since he came to see me around 7 in the evening.

I did the scan baby still OK but that afternoon I got so sick vomiting feeling so cold I thought I was in the sea by that time they said I had to terminate the baby now because it wasn't going to make it and if it did I will be in danger the way they talked about my baby was like this thing they need to get rid off was so painful my husband said maybe you do what they asked u was so very scared I did take the pill I remember them trying to put IV in my arm but after that I can't remember anything at all the next time I woak up was in the ICU tubes in my mouth nose and so many machine around me it I was so confused and thinking it was just a dream but it wasn't I try to talk to my husband but I couldn't I have lost the capacity to speak I couldn't move my intire body was in pain.

It took me few day but I start speaking barley most of the time I try to right it down but I couldn't do that we'll ether I spend in the ICU 10 days of horeabel time it almost felt like a movie seen at some point I was talking crazy my husband to asked for a head scan to see if my brain was affected by this septic thing but thank God it wasn't.

This whole time I did not know what had happened to my kidneys I was already on daylsis in ICU but I wasn't aware of it because if so many tubes and I wasn't really my self too much pain killer and antibaotic's there was a time they told my husband they have tried all the antibiotics coktail and this last one is all they could think of and if this dint work they wouldn't know what to do basicliy they are saying I will die they have already asked him to take my womb out because they weren't sure where I was infected but he had said No to them.

Finily I got transfered to kidney ward where there was only old people then I start asking why I was there the nurse told me to do daylsis I was confused but I didn't say anything else and they took me to do my daylsis I asked the doctor what exactly was going on then he told me both my kidney had shut down and I was at the end of kidney faluer and that was stage 5 I asked him when I will get back to normal and go home he told me I have less than 5% chance of getting back to normal at that moment all I wanted to do was just kill my self I didn't see my self being in that hospital 3 times a week for the rest of my life.

But my sister came from Ethiopia to be with us that helped since all my family are back home it was nice to have her around and after few months it went up to stage 4 and I stop the daylsis.

It hadn't been easy at all I feel like this thing ripe my heart out and I can't breath it changed my life it changed me as a Pearson I use to be one who believe in God and postove in life but now I can't trust anyone or anything I don't go to chearch and I certainly don't believe in God anymore so you see they have killed me just not all the way and I don't know what to do.

Thanks for listing I don't really talk to anyone about it beside my husband.

fashiongee profile image
fashiongee

Hi, I am so sorry to read that you have had such a hard time, it sounds very distressing, It sound like like you need to have a chat with your GP, get them to arrange some counselling it wil help you come to terms with what's happened to you, they won't judge you, they are there to listen and support. Once you feel stronger it will be eaiser to make any decision about your future, sometimes it's hard to make decisions with a load of 'noise' in your head, counseling will help with that, keep strong you can do this!

Take care

Gee xx

MimiRahel profile image
MimiRahel in reply to fashiongee

Thank you for your help it means a lot to get to talk about it with someone.

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