Post-kidney transplant fertility & pregnancy

[jenjen]

Hi,
Just an update.
Transferred onto Aza in April and kidney function wasn't affected at all (in fact it is better than ever, last week it was 98!).

No joy on the baby front, yet, but then I have spent the last few months out of action so to speak due to various abnormal cervical smears & having a fair few operations to remove pre-cancerous cells.

I've been working away a lot too in Kenya over the last year, so we've not really wanted to try since pregnancy & anti-malarial drugs do not mix! Hoping to get back down to it in May once my projects there have finished.

Nice to hear about all the success stories

[Thumps]

Hey Jenjen!

[balib310582]

Hi JenJen

Just wondering how things are going? I was interested to read all these posts as I am also looking to start a family.

thanks

Alison

[Hannah84]

Hi all,

I agree with the comment about feeling pretty alone in my situation, pondering pregnancy post-transplant - it's really nice to hear other women's experiences. I'm 12 years post transplant, I've been lucky enough to have enjoyed mostly good health, a few bumps along the way that's for sure. I used to have a baseline of around 85, but that crept up from about 8 years post transplant and has been consistently around 110. I'm 31 and engaged & am thinking more realistically about children. I'm exactly the same as you initially said you felt Jenjen - a bit ambivalent about having children. I love kids, and if it wasn't for my health issues I wouldn't think twice, but I'm nervous about harming the baby, my own health, the baby's future development etc... It's a very hard decision, and from what I've researched (albeit briefly, and exclusively online) there doesn't seem to be much long term research on how certain medications affect a child's development. I'm not sure I could cope with being responsible for any ill health or learning difficulties of my own child, the thought makes me very upset.
I'm nervous about having to go from MMF to another med too. Tacro & MMF have worked well for me.
Do let us know how you get on Jenjen, and anyone else considering conception - I'd love to hear more experiences.

This might be a stupid question: for those of you post transplant with kids, once you successfully conceived and were pregnant, did you feel like your lower abdomen was...'overly crowded'?? Did it hurt at all, stretch your scar painfully or did you feel any terrible pains with the baby kicking the graft? Can a baby actually damage the kidney from inside by wriggling/kicking?
Also, if anyone had a vaginal birth, is there any concern about rupturing of the graft/scar at all? Sorry to sound gruesome, I don't know who else to ask these things!

In response to someone who asked whether lifestyle factors influence getting your creatinine down: I think yes, lifestyle can be an influencing factor. I found that for about a year I was getting recurring urinary infections and consequently my base levels shot up to around 160. I was honestly getting UTIs so, so frequently - it felt like I was constantly on antibiotics. My specialist even had me taking a small dose prophylactic daily... When the infections finally settled down, and I was off antibiotics, I found the base levels went down, but (as I said above) the baseline increased from 80 odd up to 110 and hasn't gone down since. So (after that ramble): make sure you take care of any lingering infections in your body. For me that means obviously taking antibiotics until it's cleared up, getting lots of sleep (I always get snuffly/sore throat if I have a few nights of terrible sleep), stay really hydrated, minimize internal and external stress factors.... cheesy advice, but get the basics on track: infections, sleep, stress, diet, exercise, limit booze. Best of luck to you all.

[AmandaClare]

Hannah, I asked my consultant whether my tx kidney might be squashed by a growing baby. He said no, generally the kidney is well out of the way of the action. I think he said he'd seen a problem just once but that was in some kind of special circumstances - sorry to be vague, I can't remember now.

I had a caesarian and there was a transplant surgeon in the room, just in case of any impact on the kidney. He wasn't needed! They cut me oddly, more to the other side to stay away from the kidney, and that made both the operation and recovery afterwards more painful than normal.

On drugs, I think medics have a good idea what does and what doesn't cross the placenta. They were happy for me to have the baby on my drug regime but not to breastfeed.

[Karla87]

Hi all,

And a special hello to Hannah84. Your story & your questions mimic mine & prompted me to make a post.

It’s quite a relief to find a forum of people that are in a very similar and unique situation to me. Living in Australia, where the population is minute compared to the UK or USA, my specialists couldn’t refer me to another women that was in my situation, there was nobody even in my state! ☹ And surrogacy is illegal here.

I had a live kidney tx when I was 17. I am now 28 years old and coming up to 11 years post transplant and I can truthfully say that I have had no complications, none. My creat has remained 90 since the day I had the op. I take small doses of Tacrolimus and MFF only.

Now newly married, I am now in the position to have a baby. I have no maternal instinct yet & neither myself or my friends would normally consider babies until their 30’s. But I feel I should take advantage of my good health now. However, I often think, how will I do this on a transplant? I already think it’s amazing that one human being can survive off one transplanted kidney, let-a-lone a second person. And what if this all goes terribly wrong and I’m back on dialysis caring for a new born? (which is my worse nightmare). I have ready dozens of journal articles & done heaps of other research on the topic. In consulation with my nephrologist and obstetrician, the odds of me having a healthy baby & staying healthy myself are remarkably in my favour.

Like Hannah, I am nervous about changing my drugs since Tac and MFF have looked after me for so long, and I’ve never suffered from rejection. Has anyone developed new rejection changing from MFF to Imuran?

Once again, like Hannah. Does the baby squish the tx? Im not sure about you guys, but I am a skinny person and I my tx is so close to the skin that I can I can feel the organ and you can see that something is in there, a bump to the side of my abdomen. My abdomen already feels ‘over crowded.’ Im worried that the baby will put a lot of stress on the tx. How can it be in a different spot, its all crowded into the abdomen somehow. And will the scar be stretched so much that I will be left with excess skin that wont go back to somewhat normal afterwards?

As for giving birth, my specialist said they would only do a caesar on my 2 weeks before the due date.

I may have trouble getting pregnant anyway, because like JenJen I had to have an op to remove pre-cancerous cells from my cervix and I have Polycystic Ovarian Syndrome. I wonder if those conditions are related to the poisons (drugs) we have to take. Time will tell.

[balib310582]

Hi folks, so I came off of MMF at the end of December and have been taking azathioprine as an alternative since (not allowed to conceive while on MMF), BUT since coming off MMF my creative baseline of 90 has crept up to around 107. I've to go into hospital on Wed for a biopsy of the TX kidney. I am slightly worried, I hope it's just to do with the new meds but worry also if that is the case that they will take me off them immediately and put me back onto MMF which means I'll not be allowed to conceive. Does anyone know if there are other alternatives to MMF which can be taken during pregnancy? I know I can ask my consultant but won't see him until next week and eager to answers now. Thanks! X

[Tee]

Hello everyone I am really glad to have found this forum, I too am considering pregnancy but I have not gotten pregnant. Me and my husband have been trying since feb 2015 and I have gotten the ok from my transplant clinic. I am taking azathioprine instead of mmf and labetalol for my high blood pressure because I was told those do not cause birth defects. However it's been over a year and we are still struggling with getting pregnant. I was wondering if anyone else had trouble conceiving and what could be done to help with that? Also I started seeing an obgyn and she put me on metformin to help me with ovulating but after 2months of seeing her, her office stopped taking my insurance so I currently don't have an obgyn and am no longer taking Metformin. Also my periods are irregular I get them about every two to three months. Does anyone else have that problem? I have also started taking prenatal care pills and one of my doctors said I can try taking a fertility drug but my other doctor said to wait till I get another obgyn and see what they say... So I also was wondering if anyone has taken any fertility drugs to help them get pregnant? Thank you for taking the time to read this and I would appreciate any information you might have.

[nook31]

Hi, I'm new to this broad and I am happy that I found a group that can relate to what I'm going through. I got a kidney transplant in 2011 from my mom (living donor). I am 31 years old and my husband and I would like to have a child. Every time I ask my transplant doctor to change my medicine so I can have a baby, I get a long talk about how I can loose my transplant kidney. I have asked my transplant team about five times to change my medicine and I get a long speech and they do not change my medicine. I don't know what else I should do. I don't want to risk it and get pregnant off of MMF drugs. What should I do?

[Tee]

Nook 31 I would suggest finding another doctor to change your meds. It definitely wouldn't be smart to stop ur mmf meds to get pregnant that would only cause u too lose the kidney. There are doctors who can change your meds so that the meds don't cause birth defects. It is important a to stay on ur meds. Also is there anything the Drs might be worried about? How is ur creatine level?

[nook31]

Hi Tee, my creatine levels is 0.9 and the highest it get is 1.1. Thank you for the response and I will find another doctor and see what they say.

[Jk235]

Hi everyone!
Came across this page when I was having a Google. I had my transplant 8 years ago, I am getting married next year and my partner and I went for a pre pregnancy appointment last week to find out more about the process post transplant.
I am officially freaking out!!

My creat goes between 135-160ish, which they said is mid risk for pregnancy complications. I desperately want to bring that down but it's been that way for a few years now and I do everything I can in terms of keeping myself well - drink loads of water, exercise, good diet etc.

Can't imagine not having my own children but I'm scared of the risks to transplant and definitely don't want to go back on dialysis! I'm also having this feeling that no matter which choice we make I am being selfish - selfish to protect my transplant if we decide not to try and get pregnant, and selfish to risk my transplant if we do decide to get pregnant! Does that make sense to anyone? My parter and friend who I have spoken to are really understanding but I do think I'm barking !!!

It is lush to read so many successful stories

[wagolynn]

Hi, I'm new to this broad and I am happy that I found a group that can relate to what I'm going through. I got a kidney transplant in 2011 from my mom (living donor). I am 31 years old and my husband and I would like to have a child. Every time I ask my transplant doctor to change my medicine so I can have a baby, I get a long talk about how I can loose my transplant kidney. I have asked my transplant team about five times to change my medicine and I get a long speech and they do not change my medicine. I don't know what else I should do. I don't want to risk it and get pregnant off of MMF drugs. What should I do?

I would say, if you do not fully understand what your transplant team are telling you, and why, then think hard about what you think is unclear, make a list of questions (write them down) based upon yours, and your husbands thoughts.

Make an appointment, and work your way through the list, ask, if any response is unclear to you both.

Putting the extra load of a baby on your kidney is always going to be a risk, a risk to you, your kidney, and the baby.
In some cases the risks are manageable but every case is different.

Though I am male, and old, I have a great deal of sympathy for your dilemma, and the only solution I can see is for you both to fully understand why your team are reluctant, and at what level the risks are for you, as said above, each case is different.

Then you can make a rational choice.

[KPtransplant]

Hi folks,

I was wondering if any of you have had experiences with pregnancy post renal transplant.

Did any of you have trouble with your graft or renal function (when switching to Immuran from cellcept)?or a lowering of eGFR post pregnancy after a renal transplant?

Does having a pregnancy post renal transplant significantly lower your eGFR and your life span by a few years?

Things are currently stable and good as per the doctor. Different nephrologists say different things but most have said I'm currently stable and fit but some give me a lecture about the risks involved and that makes me scared!My gynecologist tells me that one of her patients had 3 babies post renal transplant.

I am seriously considering another pregnancy but I guess I'm really scared about the outcome. It wouldn't make sense to have a baby and then have a decline in renal function, needing dialysis a few years later. It wouldn't be fair on the new baby or the family I have now. Considering that it has gone well for many of you,having a healthy baby 9 months later makes me want to hope.

I also tend to be on the underweight side and already have a child prior to the transplant.

[AmandaClare]

Hi KP

After pregnancy my kidney did seem to deteriorate from totally amazing to merely very good... I previously had steady creatinine of 92, exactly the same result every blood test, no matter what I did. I'd already had the kidney 22 years when I got pregnant.

Since giving birth my creatinine fluctuates between 100 and 125. But it's still going strong and I've now had it for 28 years.

I sometimes think that my transplant would have seen me out if I hadn't had my son, whereas now it might go on for many more years but I suspect I will face renal failure again at some point (if nothing else gets me first!). I don't regret a thing but of course it's different if you already have one child to consider.

If you had your first baby before you were ill you need to brace yourself for a very different experience - far more medicalised, closely monitored.

Very best of luck with whatever you decide.

Amanda x