CKD and pregnancy??

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Hi All,

I am a 30 year old female and was diagnosed with CKD 5 years ago. I have been very stable due to a combination of diet and ramipiril (for proteinuria). Creatinin is about 220 and blood pressure is perfect. I am otherwise healthy and I am a healthy weight. My neprologist has always been unsure as to whether I should get pregnant and my feeling is that she is opposed to it. I went to an obstetrician who said I should try and get pregnant now. Since speaking to the obstetrician I came off the Ramipiril to see how my kidneys would function on their own. It turns out that the protein levels in my urine rose quite high (they were approx. 1 on Ramipiril and are now approx. 4). Since then my nephrologist has said that she couldn't recommend that I try to get pregnant. I am devastated and I feel like there is very little information out there for me to make an informed choice. My doctor doen't seem to have any other female patients in my predicament. My chice at this stage is stay off the Ramipiril and requrie a transplant within the next 18 months or go back on it and not require a transplant for an unknown duration. This second prospect is obviously the safer choice longterm but the unknown is so frustrating and I wish to be a mother above anything else. I was just wondering whether anyone else has been/ is in a similar position?

Thank you!

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  • Posted

    Hello,

    I'm not sure if this is any help at all as everyone is different.

    I am 28 now and had a baby boy 21 months ago. At the time of falling pregnant I was stage 3 and creatine at 180. All was fine in pregnancy until I developed pre eclampsia and he was born 2 weeks early, he was small but healthy and is doing fine now. My pregnancy worsened for kidneys and I was at stage 4 with creatine at 240 where it still is now. Initially after his birth I was on ridiculous amounts of bp meds, 2000mg of labetelol a day. I'm now on 100mg of losartan and 60mg nifedipene. To be honest I didn't think pregnancy would affect my kidneys as much as it did. My mum has pkd and she had 2 children and no problems until late 40s. My aunt has had 6 children, she has pkd and it hasn't affected her kidneys much at all, but I guess no one can really tell what the impact of pregnancy on your kidneys would be. I feel your frustration. My frustration is not knowing when kidney failure will occur, I just try to make the most of time with my son whilst I'm feeling relatively ok.

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    • Posted

      Thanks 5545! I am delighted to hear a good news story! Everyone is different but it is helpful to hear about other people's experiences as there is so little information available. Do you mind me asking was the protein in your urine high beofre you got pregnant and then during pregnancy? That seems to be the major obstacle and risk at the moment. Yes the frustration is very difficult to deal with and nobody else can understand this. My nephrologist keeps telling me that I have plenty of time to get pregnant once I have a transplant as I am 'so young'. My point is that firstly I am not 'so young' in terms of fertility, and secondly if I go back on Ramipiril she has no indication as to when I would require a translant, it could be five years or more which would leave me with little time, provided the transplant is successful. Then there is the possibility that the tranplant is not successful. 
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  • Posted

    Hi,

    It is a predicament and a hard choice, do you risk or kidney function or have a child.  The honest answer is only you can take the gamble.  I have had kidney issues that were diagnosed at 13 I had a baby and was fine the only issue baby stopped growing at 36 weeks I had to be induced and at 4 weeks prem she was 5lb8oz but no special care required. A while later I had another baby the hospital were super cautious and I had steriod injections at 30 weeks for the babies lungs just in case but again made it to 36 weeks and he was 4lb10oz but again no intervention from special care and he is fine.  However when he was 4 i went into full end stage renal failure (there is no way of knowing if this is due to having a baby or how it would of been anyway) I am now on dialysis and don't have to follow any special diet as my bloods are stable due to the dialysis I only take one bp med and my bloods are regularly monitoried by medical professionals (renal consultant and dietician) my friend is a good enough match to give me a kidney of her's so we are just waiting for it to happen.  If you ask me was it worth it, then for me personally yes it was I love my children to the moon and back and it was a no brainer I wouldn't change a thing.  Would I do it again, yes I would.  I am lucky my kidney function llasted as long as it did.  You will not know if your kidney funcion will drop and only you can make the decision to take the risk.  You may be able to have children after a transplant, on the flip side you may never reach that stage if you keep taking the meds.  This is a risk that you have to take and it has to be your decision, no one can make it for you.  Good luck with whatever you decide x

     

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    • Posted

      Hi Helen,

      Thanks for your reply. Yes it's just one of those very difficult decisions that even doctors can't really help with. I think at this stage it is best if I go back to the obstetrician to assess my most recent results off my tablets. I don't mind the risk of loss of kidney function as that is inevitable at some stage. It's the other risks to myself or a baby which I am worried about. I just wanted to hear other women's stories to help me decide what to do. I hope you are keeping as well as can be given the circumstances xx

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    • Posted

      Hi,

      I am well thanks, I am really lucky in that I have the most amazing employers and colleagues.  They are behind me 100% so at least I don't have to worry about getting the sack.  I don't relly have time off, I had a bit after my tenckoff catheter op for my dialysis but thats it and obviously will need time off for my transplant but they have already said they are with me so for that I am so greatful as there are some who are not so lucky.  You need to ask what kind of support you would receive if you were to go ahead and get pregenant, I was watched like a hawk with regular growth scans and appointments with antinatal and renal.  I thin as long as they keep a close eye on you at least you know what is what (the only thing you don't know is the effect on the baby) good luck and keep us updated xx

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    • Posted

      Hi,

      I had my transplant in Sep 16 everything is starting to settle and I feel the best I have in a long time (I can't remember feeling like this). I think as long as you are well monitored so they can keep an eye on things then this helps there is always stuff they can do.  Can I just add about the plenty of time after transplant this is iffy as you have to wait two years after transplant to have a baby, that is the guide in the UK anyway.  You have to be stable on your antirejection meds as they need to change them as one of them you can't take while pregnant or feeing.  They have to make sure you are stable before they will change.  I had issues for a while.  I was back in hospital in the Oct as they were poisoning me with one of the meds its a fine line between to little and rejection and too much also causing rejection so that was that, then they did it again to me in December but I knew what to watch for so they reduced them a bit.  The other anti rejection med gave me chronic diarrhea so that had to be changed, my blood results were all over the place and it is only in the last three week they have settled so that has been almost 6 months plus if you get an infection that puts a spanner in the works.  Just thought I would mention all of this so you can make an informed decision.  I wouldn't change my decision for the world, my kids are amazing and my best friends and such good fun and if I am honest the reason I have remained happy through my journey if ever I felt fed up I would just look at one of them and there faces would be enough to cheer me up even if the big was a bloody nightmare going through her stubborn teen years haha. 

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  • Posted

    Hi, I wan to wish you all the best with whatever decsion you make - it's not easy.  It's not easy for parents of daughters who have to make this decision.  I'm not  renal patient - my daughter, now 26, is and has kidney impairment all her life, so we are lucky that she is well and stable. She is stage 3a with protenuria and on medication for this. She has other medical difficulties relating to having had a through knee amputation and is on medication for neuropathic pain.  All through her adult life she talks about settling down and having children - I have supported this, knowing that she may need help as she has been told that any kidney function she loses during pregnancy she won't get back and vow to be there for her.  She has recently started a much more serious relationship and while I am so happy for her she tells me I look sad.  She's right there is a part of me that is sad as I don't want my daughter to go through any more than she has done already and I worry about the effect that a pregnancy will have on her health.  This decision, when she makes it, is hers and her partners and I will respect this completely, however I feel at a loss as I feel unable to protect her, and if I'm honest I would rather have one less grandchild and have a healthy daughter.

     I can't share how I feel with her as it is important that she lives her life for her and not because of how I feel.

    I truely hope everything works  out well for you, take care.

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    • Posted

      Hi,

      You sound wonderful and you have a very brave daughter! It is important to get thiings off your chest, even if it is with strangers. I know how you feel about protecting your children, my daughter was 16 when I started dialysis, she wanted to get tested to be a doner she had done her research too, was able to tell me that in an emergency she could give a kidney at her age.  How do you decide to put anyone through that let alone your daughter. It is our job to protect our children.  I wish you and your daughter all the very best for the future.

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  • Posted

    Hi, i know exactly how you're feeling. I know I'm a little late to reply on this topic, but I'm 30 yrs old myself. My kidney functions have been up and down and at this point in my life I'm hoping and wanting to have children or at least a child with my boyfriend. I'm worried about my kidney function if I do get pregnant. But above all reading the responses from other people on your topic of discussion, I want to have a child and feel a bit more at ease that other people have had children along with having problems. What also puts a strain on my situation is that I've been diabetic since I was 7, so not only do I have to worry about my kidney function on its own, but also because I'm diabetic. I've decided even though I still have some worry about what will happen, that I will go forth and try to get pregnant. I'm a person of faith and as I've always known, everything good comes from God. I really hope that you have great luck with deciding on getting pregnant or not. That is if you haven't decided. Best of luck and high hopes for your future to have a child or children.

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  • Posted

    From what i understand. Getting pregnant in your situation could be fatal for you. You can always adopt or foster. Watch the movie steel magnolias. ( with queen latifah and jill scott)
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    • Posted

      Hi,

      What is this opinion based on can I ask? I have Alports and have had two children and as I am still here obviously not fatal.  Lots of people with kidney issues have children, you are just monitored more closely. Don't believe everything you read online.  You just have to be careful, do exactly as you are advised and be prepared for your kidney function to drop and not recover. As long as you make an informed choice and know the risks (and there are risks) then it is not necessarily a fatal outcome, I am alive and kicking and wouldn't have had it any other way I have been blessed with two beautiful children and I decided to take the risk twice and boy am I glad I did.  Its all down to individual choice and its not all doom and gloom. smile

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  • Posted

    I know the original poster started this discussion a long time ago but I just wanted to add to it.

    I'm 33 with polycystic kidney disease which I've had since I was born.  Ive only got 20% kidney function and back in March 2015 I found out I was pregnant with my little boy. I got warned about everything that could go wrong with the pregnancy but I had a straight forward trouble free pregnancy apart from a few weeks before my due date my blood pressure went high so was put on labetalol. I deliverd my son at 37 weeks weighing a good 6lb 8ozs and he is completely healthy. Also my kidney function went up to 27% and stayed like that throughout the pregnancy and I was only on bp meds for a couple of weeks after delivery. My kidney function went back to 20 again and has stayed that way for the last 2 years. I think the doctors just like to give you the worst case scenarios for it just so your prepared. I knew everything that could go wrong but still went ahead and I now have my beautiful little boy who I love more than anything in the world!

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    • Posted

      That's so great to hear. As my brother told me it's mind over matter. A positive mind is always the best way to go even when knowing of possibilities of the wrongs that can happen. Of course this is only the way I think and my opinion on things, but negativity is never good. I'm happy that you're doing well. It gives me more hope.

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  • Posted

    Hi,

    I'm so glad I came across this discussion. I haven't read all replies but I will. Well I'm 36 years old now and around 2008 or 2009 I was diagnosed with lupus in my kidneys and I was at stage 4 with around 21% use of my kidneys. Of course I was very afraid but I was devastated once my doctor told me I would not be able to have children. After almost 10 years I'm happy to say my kidney function varies from 2.2 to 2.6 with excellent blood pressure. My doctor is constantly reminding me that I shouldn't get pregnant and that if I were to become pregnant, I would need to have an abortion. But I refuse to think that that's my only option. I'm not opposed to adopting some day but I would love to have children of my own. Are there any recommendation you guys might have? Thank you in advance. 

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    • Posted

      Hi ! I wanted to respond to you for a couple reasons. 1. Being you have lupus and CKD. I do as well.

      2. You being 30, I am 28.

      3. The not taking no for an answer.

      I’ve had lupus since I was 14 years old. My disease has been dormant , kidney levels and protein leakage stable for many years. I knew in my heart it was time for me. My nephrologist told me not to get pregnant.  It was my gynecologist that one day sat  me down, put his hand on my shoulder and said, “ I know you’ve been through so much and you may be scared. But you can do this. You have to believe you can, and then rid of anyone or any thought that makes you feel otherwise.” It’s exactly what I did. I told my nephrologist I wanted to get pregnant and if he couldn’t assist me with , point me in the direction of someone who can.  I’ve been switched on safe meds for Baby, been taking prenatal vitamins and fish oil for three months and I’m about to take that leap of faith.I go in for lab work this this week and if my levels are my usual stability or even better, I’m going for it in January !! The only thing that scares me more than having a child , is not trying at all. So if you feel it in your heart go for it.! You’ll be in my thoughts and prayers! 

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    • Posted

      I FOrgot to add that I asked for medical  refferals. I switched nephrologists to a better hospital along with scheduling an appointment with maternal medicine for my pregnancy will be high risk. 
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    • Posted

      I competently agree with all that you've said. I was going through dialysis and stuck in the hospital when the thought of everything I was going through was overwhelming me My brother was there with me and told me "Everything will be alight just remember.....it's all mind over matter." After he told me that I kept that in mind, got through 2 months of dialysis and my kidney levels got to the level where my nephrologist was pleased to tell me I could stop doing dialysis. I'm still keeping the advice in my mind of it all being mind over matter and more so when I start trying to have a child. Of course I will keep taking my meds, keeping hydrated and having a positive outlook on everything. I hope, pray and wish you nothing but best wishes and the best of luck with your plans and work towards having a child.

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