getting pregnant with kidney failure....

[shorty590000]

ok,, so heres my question..... well, first let me explain my situation - i went on dialysis in May after septic shock...my kidney function was 18% last month without dialysis and I have been off now for about a month.. I will go to doctor in couple of weeks for check up and figure out if this will continue....anyway,, what I am wondering is if someone was to get pregnant in my situation I can't help but think that it would reverse my kidney function and I would be back on dialysis... just curious... if anybody has any input please share... thank you..

[justme15]

I talked to my gynecologist and nephrologist about this last year.  she told me that getting pregnant will indeed put extra stress on the  kidney.  they recommended that I not get pregnant unless my creatinine and kidney function is stable.  So, there may be some decline in function when you are pregnant, so it would probably be best to hold off until your kidney function has improved and is stable.
that's my 'non-MD' advice. :-)

[shorty590000]

justme thank you for your input.... it seemed like common sense would tell me this, but hearing it from somebody else is good... confirmation.. goodness knows I am not trying to get pregnant.. i am 40 w 2 boys.. almost grown and gone.. lol.... but I am engaged.. and need to make sure we are careful....

[kellyt]

I was diagnosed in 93 and I got married in June 98.  I asked my nephrologist at that time if I were stable enough to get pregnant and he said "yes".  My creatinine was like 2.7 or something and my GFR was probably in the upper 20's.  My husband and I started to plan to try to get pregnant, but we weren't really trying that hard.  It wasn't long after that that my labs started changing and he said that it would probably be best that I not get pregnant and that doing so could be very dangerous for me and/or cause my kidneys to shut down all together.  We (my husband and I) agreed.  I ended up transplanting in Nov 2008 without ever going on dialysis, but I probably would have had to go on dialysis had I had a baby.  That was a tough sacrifice for me, but, again, happy to have my life and my new kidney.  Good Luck!   

[Desert Dancer]

My last pregnancy was in 2002 and my nephrologist at the time told me that it would put some strain on my kidneys but would not cause them to fail. My creatinine was 2.5 and my GFR was about 23.

I think a more important question - one that never gets discussed - is what happens to the BABY should it be born early, as there is a very good likelihood of that happening. There are other things to look at besides creatinine and GFR, such as the fact that uremia causes blood clotting issues. In my case my placenta did not attach properly and I ended up with placenta abruptio and nearly bled to death. As a result our daughter Sofia was born 15 weeks early and suffered terribly the entire month she was alive, finally dying of candida sepsis.

I know it is the nephrologist's job to look out for his patient's kidneys, but if anyone had pointed out what could happen to HER - not just ME - I'd have been a helluva lot more careful than I was.

[MooseMom]

Oh, DD, what a terrible story!  I am so sorry.  I was about to post the same thought...that no one tells you what might happen to a baby gestating inside of a woman with poor renal function.

I'll quickly share my own story.  I was 28 weeks pregnant when I was hospitalized with pre-eclampsia.  I had shown gross proteinuria.  My kidney function was starting to deteriorate and I had an elective C-section.  The birth of my son didn't stop the protein loss, so six months later, I had a renal biopsy and was diagnosed with fsgs.

I was told that if I wanted to have another baby, I'd probably be hospitalized at 19 weeks and kept in until the baby was born.  I was told that it is the kidneys that bear the biggest strain in a pregnant woman's body.  I was advised not to ever have another pregnancy but that it was my choice.  I chose tubal ligation as I decided that the child I had deserved a healthy mother.

It so happens that my son, my only child, is autistic.  No one knows what exactly causes autism.  I suspect there are many causes.  I cannot say for sure that my worse-than-realized renal function during pregnancy caused his autism, but I did phone some posh university in the UK (where I was living at the time) that was doing a lot of research into autism, and I asked if poor renal function in the gestating mother could possibly be a factor.  They said that that was indeed one thing they were looking at.

Maybe I'm adding 2 plus 2 and getting 5, but I will always suspect that my fsgs while pregnant caused my son's autism.  No one can prove otherwise.  Why take the chance if you don't have to.  If you're going to have to cope with CKD your whole life, also having to cope with your child's permanent disability is just a horror.

[rsudock]

After my transplant in June I met a woman who was transplanted a month before me she was telling me her adventure about having a baby while ON dialysis...she had to get dialysised daily and the baby was born a month early, but ended up being just fine! The mother also had diabetes to contend with!

xo,
R

[Desert Dancer]

After my transplant in June I met a woman who was transplanted a month before me she was telling me her adventure about having a baby while ON dialysis...she had to get dialysised daily and the baby was born a month early, but ended up being just fine! The mother also had diabetes to contend with!

That's fantastic... I must have heard ten thousand encouraging stories of preemies and micro-preemies who were "now strapping young men who play linebacker" while Sofia was in the NICU. Unfortunately, for every baby who comes through with minimal or no complications, there are just as many who die from necrotizing enterocolitis, sepsis or strokes. Or who have blindness or severe developmental disabilities due to brain bleeds.

The point being, when you have a high-risk pregnancy that you intend carrying to term (and the odds are very good that you will will deliver early due to pre-eclampsia or another complication) there is another being whose well-being has to be taken into consideration. It's not a time for hopeful fantasies of fairytale endings and stories of "my cousin's neighbor's mother's daughter was born 15  weeks early and is now a college sophomore with a 5.5 GPA". It's a time for realism and the realization that there are consequences for others besides yourself.  Nephrologists won't point that out -it's not necessarily their job - and I had to learn the hard way.  I'm sorry if it sounds harsh but I would not wish that experience or that particular regret on anyone.

[MooseMom]

DD, you are so right, and I don't understand why the interests of other people in these equations aren't taken into consideration.  How many times have we heard the heroic stories of women who give up their lives in order to bring a child into the world, knowing all the while the risks that they are taking?  What about the new baby who will now have no mother, or the other children who also will lose their mom, not to mention the husband who will now lose his wife and have to take care of the children by himself?

  for you, DD.

[shorty590000]

wow.. thank you all so much for sharing your stories.. and that is so true, even though I had to admit it, that the main thought is my kidneys.. I certainly was not thinking about what would happen to the baby...I am so new to this illness that all those other complications never came to mind... and the protein, clotting and other things.... I have to go see my OB on Wed.. and so I will come up with a plan...........I was young and completely healthy when I had my 2 boys and still I had pre eclampsia and they were both born emergency c-section.. so the more I think about it, the more I realize I would have significant problems if I were to become pregnant now.. again, thank you all and keep the stories coming...

[Traveller1947]

Thank you so much, Desert Dancer and MooseMom, for your generosity in sharing your heart-breaking stories.  When I was young I took the advice of the doctor who told me it was too dangerous for me to have children because of my kidney disease (fsgs).  I still grieve for the never-to-be- born children I might have had, but experiences like yours have me ever more convinced it was a good decision.

[Rain]

This is the one thing I hate with having CKD so young, that i will never have children.  But I refuse to give up the dream and may look for a surrogate in 5 years or so from now and there are always options to adopt.

[cariad]

My last pregnancy was in 2002 and my nephrologist at the time told me that it would put some strain on my kidneys but would not cause them to fail. My creatinine was 2.5 and my GFR was about 23.

I think a more important question - one that never gets discussed - is what happens to the BABY should it be born early, as there is a very good likelihood of that happening. There are other things to look at besides creatinine and GFR, such as the fact that uremia causes blood clotting issues. In my case my placenta did not attach properly and I ended up with placenta abruptio and nearly bled to death. As a result our daughter Sofia was born 15 weeks early and suffered terribly the entire month she was alive, finally dying of candida sepsis.

I know it is the nephrologist's job to look out for his patient's kidneys, but if anyone had pointed out what could happen to HER - not just ME - I'd have been a helluva lot more careful than I was.

I am so sorry this happened, Desert Dancer. That sounds so empty. I wish there more to be done than say I am heartbroken for you. I cannot even imagine the nightmare of it.

I was always told that the risk was almost exclusively to the baby and not the mother. I have written that on here a number of times because this question does crop up, and I so agree with DD and MM that this needs to be made more clear. Like DD said, there are all of these stories about overcoming these medical odds, like a member on here who used to frequently talk about how it was possible to have a baby on dialysis because his wife had their daughter on dialysis. Yes, of course it is possible, and he had every right to share his lovely story, but when things go wrong, which happens often, devastation is left behind. It is crucial that doctors explain exactly what their patients are getting into.

I found out about these risks by asking if pregnancy was going to cause rejection, and I do believe that in the hyper-focused world of nephrology, the standard answer was supposed to be calming: No, actually, your kidney function will probably improve with pregnancy, the risks are almost entirely to the baby. That terrified me more, as it would most people, but the doctors did not seem to get that. I saw a perinatologist in the early weeks and I strongly suspect he was a pro-lifer but that was fine with me because I so wanted a second child. I actually had a massive bleeding episode a month before he was born. At my OB's office all the women had to queue up for the standard weigh in and blood pressure and all that before being seen. I stood in that line and then just turned to Gwyn and said 'I can't do this' and tried to retreat to the waiting room and they brought me back immediately. Both of my boys were born very small and stopped growing in utero.

I was told I could not have a second child because my creatinine was so high I would not be able to conceive. I knew the risks the second time, which is why I told no one, and I mean no one, until the third trimester. My family and our close friends found out via an email entitled 'Aidan has a brother' sent about two weeks after he was born. Then I did more research than I really want to admit on all the different problems that children can start to show signs of in the early years because I was convinced that he would never be a fully healthy child (whatever that might mean). I had to give that up - it was interfering with my relationship with him, always looking to pathologize everything about him because I was told that he just should not be here.

[shorty590000]

well, I went to the gynecologist yesterday.. they said my uterus was enlarged and did another pap. the last was abnormal.. so the doc put me on a progestin only pill... I hope I am covered, I certainly would not want to conceive after hearing all these heart breaking stories.. again, thank you so much for sharing...

[bleija]

 i was told that i could have a healthy child after transplant, they want u to wait  2 years for the kidney to settle... im young and i do want children, but i dnt want to risk a transplanted kidney... what are the thought on getting pregnant after transplant?

[shorty590000]

I believe I would be scared to death! but, if you are a person of faith, I would advise you to pray and ask for God's direction. He will let you know which way to go.. If I got confirmation that things would be Ok, I would do it... I can do all things through Christ, who strengthens me(and my body.). .lol..Philippians 4:13... good luck.. keep me updated..

[bleija]

well it wont be anytime soon, i am still on dialysis,. but both my husband and i are family oriented ppl, so we know we want children. we ill look into it,m talk to ppl nephs and aob and make sure we know all the rtisks before anything. but its gonne be prolly 3 years

[Riki]

This is the one thing I hate with having CKD so young, that i will never have children.  But I refuse to give up the dream and may look for a surrogate in 5 years or so from now and there are always options to adopt.

I thought that too, when I was younger, that when I was healthier, I might be able to have kids but now I'm in my 30s, I've been on dialysis, a third time, for 7 and a half years, and to top it off, I'm going blind.  As much as I'd love to have a child of my own, and give my mother a grandchild, it's just not something I see happening.  To adopt or get a surrogate, you have to meet certain criteria, and have money, and I know that I don't, so it's just not in the cards.

[Desert Dancer]

I believe I would be scared to death! but, if you are a person of faith, I would advise you to pray and ask for God's direction. He will let you know which way to go.. If I got confirmation that things would be Ok, I would do it... I can do all things through Christ, who strengthens me(and my body.). .lol..Philippians 4:13... good luck.. keep me updated..

Shorty, I am really glad your faith comforts and guides you in your day-to-day life and I honestly respect your need to believe. I have no wish to pick a fight, but I just need to point out how utterly insulting and hurtful that statement is to someone who's buried two children. It comes across as saying my daughters would be alive if I'd just had more faith and nothing could be further from the truth. Sofia had THOUSANDS of people of every conceivable faith - all around the globe - praying for her to pull through and grow strong and healthy. I can't begin to count the number of prayer chains she was on in this country alone. Were their prayers defective? No. Faith does not trump biological reality.

I went forward with both my pregnancies because of hope and faith. In Teresa's case (our older daughter, stillborn in 1999), it was still a Christian faith. I fully expected and believed an invisible friend would intervene and alter physical reality so I could have what I wanted. Thankfully, Teresa did not have to suffer. Sofia, however, bore the full brunt of my naivete and refusal to deal with the facts on the ground.

Again, I am sorry if this sounds harsh. I suppose some might read it as bitter, but it's not. It's just that when you've seen your beloved child swollen to twice her size with fluid retention, grey-skinned and hooked up to an oscillating ventilator, it does something to you. On the last day of her life I promised her I would never let it happen to another child. Obviously, I was speaking of myself at the time but if my experience can spare ANY other child - or any other parent - that suffering, then I am obligated to Sofia to share that experience. My daughters are not dead because my faith was insufficient. They are dead because I have kidney disease and cannot carry a pregnancy to viability. Period.

[shorty590000]

Desert dancer, there really are no words that I can say.. sorry does not cut it...for your losses I mean... I am a person of faith, but I am also realistic.. I watched my mother die, tragically at 45... So i know that these tragic these can happen... and I do not understand it.. do not even understand a portion of it... I just know that some things are GOd's will.. who knows why? why would God take babies like this away? who know? I wish we did know... But my faith has gotten me thru a lot... they did not expect me to live.. they called in my family when I got sick.. red cross shipped my oldest son who is in the air force back to the states because they were so certain I was not gonna make it... And I cannot help but believe it was the faith of my family and friends and their numerous prayers that kept me going and pulled me through..

[Zog]

I tuck a little girl in every night that was born to a woman on dialysis.  While bad things do happen, good things happen too.  I don't know if I would recommend getting pregnant on dialysis, but it isn't the end of the world.  I'm saddened to read some of the stories on this thread.  We had to put up with a lot of negativity with our daughter.  The truth is no one knows what is going to happen.  There are several women who could be described as healthy who have miscarriages, premies, developmentally disabled or handicapped children everyday.  These are issues anyone who gets pregnant might face.

If you are trying to keep your renal function (which I think you would be) then don't get pregnant.

If you are already on dialysis and have little or no renal function then the fact that you may loose your remaining renal function may not be an issue for you personally.

Several doctors recommend pregnancy after transplant, which is a safer bet, but you can have a baby on dialysis.   I don't know if we are going to "try" for baby #2 (we didn't try for our daughter, she just happened.) with or without a transplant.  My wife has a high PRA so if she ever does get a 4th transplant, we aren't going to risk it.  To me, it seemed easier with a home hemodialysis machine.  The machine doesn't seem to care if you are pregnant or not, it will just keep on working until it gets the job done.  My wife never had swollen ankles or had to pee in the middle of the night while she was pregnant.

[rsudock]

DesertDancer I whole heartedly agree with your sentiment about faith. I agree it wasn't your lack of faith but biology and ESRD. I am sorry for the loss you have experienced....

xo,
R

[cariad]

I tuck a little girl in every night that was born to a woman on dialysis.  While bad things do happen, good things happen too.  I don't know if I would recommend getting pregnant on dialysis, but it isn't the end of the world. 

Yeah, Zog, while it's great that everything worked out for your family, I would just like to point out two things: you are male and you are not in renal failure. So, getting pregnant in renal failure (which does not necessarily mean on dialysis, by the way) may not strike you as the end of the world, but it very well could be if you have to face losing a child while going through all of those physical and emotional changes. The dialysis machine may "not care" if a person is pregnant or not but a person's body and that of the baby most certainly DOES care. Pregnancy is really tough on a person's body and not all renal failure is the same - far from it. The underlying cause of renal failure has something to say about whether or not you can expect to be able to have children. I don't think a person with diabetes on dialysis is facing very good odds, but then I am sure somewhere in the world there is a woman who would pipe up and say that it worked for her. Does not make it a wise choice.

DD, I completely agree with you about religion and how people react when tragedy strikes. It would make me angry if I cared at all what religion had to say about why bad things happen. I am glad you spoke up and let us all know how those type of comments make you feel. 

[kyshiag]

Unless I misunderstood Shorty's statement, I think she was saying to pray and ask for God's guidance in the decision to get pregnant or not.  And then to follow that guidance, which very well may be not to have a baby.

I'm not the best practicing Christian and praying for guidance BEFORE I do things is something that I must work on but I know of things I have prayed for and the final outcome had to be effected by divine intervention.  In fact, just a few weeks ago, I was threatened with a layoff.  Only 4 people in the whole company have less seniority than me but my job was saved.  Now I'm sure  some of those whose jobs were taken prayed just as hard or harder than I did.  I also don't doubt that some of what I'm going through may have been revealed to me if I had sought guidance prior to taking the job.  Heck, if I'd have just read the paper the company's financial woes were right there in black and white. 

I also know that I prayed harder and longer for my husband's kidneys to be saved than I have ever prayed before or since.  And that he yet ended up on dialysis so sometimes the answer is no.

Prayer is a thoughtful conversation and sometimes that is what is needed to help one better understand, think through, or handle a situation.

[Lovebelle]

This situation actually happend to me in September of this year. I had been on dialysis at that time for nearly a year and being a healthcare professional knew the risks of getting pregnant. I had always had difficulties in the past conceiving and now that I had ESRF I decided to take no chances and took proper precautions. Well somehow it seemed fate would play a trick on me and went to the doctor one day because I had been feeling awful only to discover I was pregnant. I cant explain the mix of emotions I had. In some ways I felt blessed because wow Im pregnant after all this time, wow...But on the other hand I felt dread. Worse than I have ver felt even when I first found out I was in kidney failure the year prior.

I just remember trying to take every action to see all my doctors to discuss the risks and to make sure the meds I was on were safe. Plus my options for Home Hemo (Im on Peritoneal at the moment). Surprisingly my doctors were all very supportive, but they biggest concern was for a developing fetus and the risks to the baby. I wish I could say I am still pregnant and moving forward as best as possible, but unfortunately most stories for Pregnant women in kidney failure do not have a happy ending. I was 12 weeks when I lost it.  Losing a pregnany is a very hard thing  and for us women here in our situation its not as simple as saying, well once you heal you can try again. This is the hardest for me, because before that happend I had begun to accept not ever having children and nowit break my think what could have been.

I am also religious and it felt for a while like a cruel joke. Why did that even have to happen. Why did that soul crushing experience have to occur at all. It still doesnt make sense and I still dont know what lesson I was to have learned. But I guess my experiences help me deal with patients in my work setting because I am able to empathize more. Pregnancy is risky is risky in the most normal of situations, but I guess Im sharing because things happen and just be ready in the event it does.