I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: jpearce on August 11, 2009, 06:26:28 AM
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When I started dialysis, there wasn't any warning or choice. It was get me on a machine or I'm a goner. After the initial shock I started asking more questions. I was 33 when put on Dialysis and my hubby and I were trying to have kids before I got ill. When I approached my nephs and neph nurses they had told me I probably wouldn't be able to have kids, that it would ruin the transplanted kidney and I should look into adoption. My family Doctor referred me to a family planning specialist and he was furious wanted the names of the people who told me this. He had said why do you think there are specialist like me and went to explain that after a the transplanted kidney was in place for a year with no complications there was no reason not to try to conceive. Has anyone else been thru this kinda a thing? It's very hard when all the Docs have different opinions.
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I haven't been there myself, but I've seen several reports of women having children after a kidney transplant. I think the Dr who told you that you can't is crackers.
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We've got a post on here from a woman who got pregnant while on dialysis, and delivered a healthy baby. Nothing is impossible. Of course, it would be a high risk pregnancy, and you would have to weigh having the baby against possibly damaging the transplant. It's your choice, though, and the neph shouldn't have told you that it wasn't possible!
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I received a transplant in 2007. My hopes were that we would be able to have kids or at least adopt after the transplant. Conceiving seems to be out of the question since my creatinine is around 1.7 to 1.9. I read up a lot about pregnancy after transplantation and from what I've read, if after you're transplanted your creatinine is below 1.5, you stand a good chance of a healthy full term pregnancy with no problems with the transplant. Above 1.5 and the chances you will have problems with the transplant go up dramatically. So hubby and I tried for adoption, but were rejected because we are unlikely a birthmother would pick us since I have kidney disease. So now we're back to square one... Don't really know what to try next.
I hope you have better luck. It is not impossible, but difficult. My neph basically told me he would be very worried I would lose the transplant and that there might be problems with the baby if I tried to have one. He referred me to a perinatologist, but I never went since after talking with hubby, we decided against trying to have our own.
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Yeah, usually if there are no complications after the transplant, you can get pregnant a year later. They say a year because they want the healing process to be complete and your body to be set after all the medications you have to take and stuff. I had a kidney transplant that lasted me 3 years...if I would have known it would fail that soon I would have tried to have a baby around that time although I am only 23 years old. If I get lucky to receive a second transplant, I plan to have a baby a year after. I will be happy with one child. Good luck and whoever told you there was no chance of you having a child does not know their information. Good luck! :flower;
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Yes, you can have kids after transplant. I had two. I have been told it is exceptionally rare for a pregnancy to ruin a transplant, but a transplant (or the drugs) can certainly destroy a pregnancy. Cellcept is one that is not good for pregnancy. Most transplant drugs are category C (the further down the alphabet you get, the more dangerous for pregnancy. They go from A-D, and then there is X which is an "absolutely avoid during pregnancy" drug. Quinine is an example of an X that people might take for leg cramps.) Category C would be that it has definitely caused problems in the past for infants, but of course these problems will usually only occur in a small percentage of cases.
Standard practice is to look at a person's creatinine to determine if pregnancy is wise. 1.5 is usually the high that doctors want to see, although I believe I was at 2.6 with my second, around 1.8 with my first. Your creat will fall during pregnancy - it is a blood volume issue, more blood means less creatinine per unit of volume, it does not really mean that your kidneys are functioning better. Anemia was a big issue for me both times. I took procrit, which really did not help, and also took Aranesp before I knew with my second. The Amgen people (makers of Aranesp) actually asked to interview me over that incident, and I was happy to tell them that I had a few issues, but my son is alive and healthy today. Perhaps by now they will have approved Aranesp for use in pregnancy.
Babies are generally born early and small post-transplant because of the drugs. I was induced at 37 weeks (considered full-term, but only just) with both. They both stopped growing in-utero, and had scary-sounding Asymmetrical Intrauterine Growth Restriction (my kids were not getting adequate nutrition toward the end, and so the baby's body is trying to save the baby's brain by allowing the head to continue to develop while the rest of the body stops growing.) My first was 5lbs 4 oz, and my second was exactly one pound lighter. He was a small baby. Thankfully, he caught up really quickly, but honestly it was scary for a week or so. He had a few issues that premies have, but everything was OK in the end.
I was considered high-risk both times. The second time they kept forgetting why I was high risk and kept asking me if I was having twins. Basically, I had to have stress-tests (the pregnancy type, where you sit in a chair and mark each time the baby kicks) 3 times a week. It was time-consuming. I was also supposed to be on bed rest from about six months each time. I was bad about following that and basically continued life as normal during both.
I was advised not to breast feed since the immunosupressive drugs would continue to affect the baby's system. This was not a big deal to me, but formula is expensive. I also had to deal with the occasional know-it-all telling me that I did not know how to care for my baby. I obviosuly did not want to dignify their sanctimony by explaining myself, so I never bothered.
Oh, I had amnio both times. That was nerve-wracking, but worth it for me. If I had it to do over again I would bring up the amnio issue earlier. I once heard a horror-story where an ob cut through someone's transplanted kidney during a C-section. I spoke with the doctor before each delivery to be sure we understood each other about where the kidney was located and what the issues were. Because of how medicine works today, it is often not your regular OB who delivers you, and of course, some c-sections are done on an emergency basis.
My take on pregnancy after transplant is that it is more dangerous for the baby than the mother. Conceiving on dialysis is truly rare - apparently only happens to less than one percent of women on dialysis. I think it is much, much safer to have a baby post-transplant and off dialysis.
Hope this helps. Good luck!
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:yahoo;
Thank you all for your responses it really makes a difference talking about it rather than sitting in limbo. Your input is very valuable to me.
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You can have kids. I waited 5 years after my transplant before I had my daughter. My pregnancy was similar to cariad as I was high risk and monitored closely. I was going to the doctor every week toward the end.
The major complication I had was eclampsia, but I don't think that had anything to do with my transplant. I was on bed rest for 4 weeks and my daughter was born small but healthy. I was not able to breast feed because of the anti-rejection drugs, but I didn't mind that.
The pregnancy did not have an effect on my kidney function, and did not cause my transplant to fail.
My daughter has been really healthy and I have no regrets. I was only 19 when I went on dialysis, and one of the main reasons I got a transplant was that I wanted to someday have kids and it's really difficult to conceive when you're on dialysis.
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Bette, do you mind if I ask what your creatinine level was during your pregnancy?
Also, Bette and Cariad -- do either you have diabetes or are you otherwise ok besides the kidney disease?
Every study I've read has given me basically no hope of even trying to conceive, but since adoption doesn't look like a possibility.. maybe I would consider getting pregnant if I could - not sure I even can.
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I also had a child after my first transplant. I was 16 years post transplant with creat of 1.4 when he was conceived. I was taking Imuran (azathioprine) and prednisone. I also was considered high risk and was seeing the doc and getting ultrasounds every week toward the end. I developed pre-eclampsia and was put on bed rest at 31 weeks.
My son (now 10) was born by emergency c-section at 35 weeks after 36 hours of labor. The emergency was that they had given me meds for the preeclampsia that lowered his heartrate too much. He spent about 18 hours in the NICU due to arrhythmia a couple of times the first night.
I was able to breastfeed him, as the pediatrician's feeling was that he was exposed to the meds in utero, so it really didn't matter if he got it through the breastmilk. To a 24 year old, that sounded fine...now I would probably research it a little more.
Billy was 4 pounds 11 ounces and 18 inches long when he was born. Very skinny, but so are most males on both sides of his family. As far as I know, Billy doesn't have any lasting health issues from his exposure to the meds. He has ADHD, but he probably would have had that anyway.
The week of his third birthday, potential donors for my second transplant were meeting with the transplant team for the first time. Was it the pregnancy or the fact that the transplant was 19 years old? No one's ever been able to answer that, so I'll accept that it was time for the transplant to fail, and I have an incredibly smart, funny and loving son.
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Hi MIbarra,
In answer to your question, I don't have diabetes and have not really experienced any major complications of kidney transplant.
I hope you do not find it offensive if I suggest that if you really feel like you will not be as happy without children as you would be with a child, I would try. Speak to the perinatologist first, of course, and ask yourself honestly if you will be able to emotionally handle such traumas as miscarriage or the inability to conceive.
I believe that most doctors found my situation to be pretty dull. The pediatric nephrologist who followed me when I was first hospitalized said that hundreds of his patients have gone on to have children after transplant - and that is just one doctor working at one hospital.
Good luck! I hope you can come to a decision that allows you to be at peace with this. :flower;
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Thanks for the info! I didn't feel it was offensive at all. Glad to have your honest opinion. Like I said, we were set for adoption and since that didn't pan out, maybe I should consider other options. We are kinda thinking of surrogacy now, but that's almost twice the price of adoption. I'm almost beginning to think even if I did lose the kidney, but ended up with a child it would all be worth it. Is that terrible to think?
Jpearce - I so hope things work out for you and you get have kiddos the natural way! :)
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Here's hoping, my 2 year wait will be in January, so hopefully I wil get a call by then. That seems to be the waiting list time here. Now I have another question, is losing your menstrual cycle normal for a dialysis patient? They have given me an injection of Lusoprol that is supposed to preserve my eggs.
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Mine is regular after the transplant, but it was quite irregular before the transplant. Sometimes I would go almost 10 months without a period and then it would last for almost 2 weeks. It never completely went away though.
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Same for me as for Mibarra.
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My creatine was 1.6 when I got pregnant and it crept up to 1.8 after the pregnancy. I don't have diabetes, and my only other health problem was high blood pressure caused by kidney disease.
My period was regular before my transplant, and still is.
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I quess I jumped the gun asking about kids. I haven't had a cycle in 2 years. Whether it's b/c of the drugs, Lupus or dialysis. Who knows. None of the Dr.s will venture there.