Post-kidney transplant fertility & pregnancy

[jenjen]

hi all
I wanted to hear from any ladies who have any experiences with pregnancy, fertility, infertility & trying to conceive post-kidney transplant

My boyfriend & I are thinking about "thinking about" it, so to speak. We've got an appointment for pre-conception counselling next month, where I believe that I will be transferred onto Azathioprine (Imuran) from Mycophenolate Mofetil (Cellcept), which causes birth defects.

I'm 34, & have been transplanted for almost 5 years. My creat has been stable around 110 since transplant, and no major problems apart from recurrent UTIs ( ). I was told that if we were going to go for it, it is pretty much now or never as a) I am not getting younger and b) statistically I am reaching the time when transplant function begins to decline

Would love to hear about people's experiences, both positive & negative. Obviously, there is a lot to think about & a lot of risks/benefits to weigh up before we decide whether to go for it it or not!

Cheers
Jen

[AmandaClare]

Hi JenJen

I got pregnant in 2010 at the age of 38. At that time I'd had my transplant for 23 years, creatinine was around 92.

It didn't go brilliantly, my blood pressure went all over the place and the little boy was delivered at 31 weeks weighing 3lb and was in neonatal for 8 weeks. However I was in touch with various other transplanted women at the same time who got to term or nearly to term, in fact I'm the only one I know who had any serious issues.

My son is now doing extremely well. He is still underweight but is full of energy and doing everything he should be at 27 months. He gets wheezy with colds but is not asthmatic in-between so we hope he will leave that behind as he grows. Also the reason for the wheeziness is a serious respiratory infection he was unlucky enough to pick up while still in neonatal - if it wasn't for that I don't think he would be having any ongoing health issues.

My kidney is not quite as outstanding as it was - I run a creatinine of 108 and it's wobblier than it used to be (though some of that may be lifestyle factors, ie the chaos of life with a small child meaning I have less time to look after myself!).

Of course it's riskier than the average pregnancy but you get managed very carefully. Also having a premature baby is very frightening and stressful but the vast majority of those born at 28 weeks+ do well, so even if that happens it isn't the end of the world. Though I did feel guilty at what I put him through, and still do.

Personally I won't be doing it again but how could I possibly regret it?

Best of luck with your decision. Happy to answer any questions.
x

[Thelma]

I had my son pre-dialysis. I had a gfr of around 25% and creatinine (I think) 170ish. Joseph was born at 36+4 in perfect health, although small at 4lb 12oz. He's a bright, energetic and average sized 3 year old now. I was 34 when he was born, and am 37 now. We've had preconception counselling recently, with a view to trying for a second (and final) child. We've got to wait until the transplant is a year old, but with a creatinine of <120 your chances of having a term baby without complications are EXCELLENT. Obviously nothing is risk free and all that, but the odds are distinctly in your favour.

[lainiepop]

Hi Jen Jen. I'm 30 and had a live donor transplant from my dad almost 8mths ago. I have a son age 5 and a daughter 18mths I had both before I had the transplant obviously but will share my experiences.

Creatinine when I got pregnant with my son was around 170 I was 25 and took 6 mths to conceive. One of the risks with kidney patients is slow growth Prem birth and pre eclampsia risk. So I has frequent scans at 12, 20, 24, 28, 32 and 34 weeks to check growth plus very frequent blood tests to monitor creatinine. Kidney specialist advised to deliver by c section a month early but as creatinine was around 190 obstetrician decided to leave it. Baby stopped growing that last month I pointed out this was main sign of pre eclampsia they put it down to me being tiny. Anyway creatinine then rocketed I ended up having him at 39 weeks naturally in 3 hours. He weighed 5lbs12 and my creatinine was 240 on delivery day and I developed post part um pre eclampsia. Anyway creatinine scrambled out to 190 to 210 odd after.

My daughter took 16mths to conceive and creatinine was 230 when I found out I was pregnant. Was told might need dialysis to sustain it and baby would be really early. Anyway this time things were more stable creatinine was 260 when I had her 5 weeks early by c section she only weighed 3lbs12 but was v healthy came home after only one week in hospital. My gfr was around 17 when I had her dropped to 10 a month after, had tx 8mths after that.

Both my children are healthy and as Thelma said with creatinine at that level I'd be confident all would be well. One positive of being high risk preg is you get looked after more and more scans so see baby more! My husband had a vasectomy almost a year ago as we decided we are happy with our boy and girl so won't be having anymore. I have felt a bit broody seeing newborns and my kidney function is best I've ever had in my life but my two are plenty and I'm very blessed to have had them.

Do keep us updated and good luck!!

Marie

Oh by the way we never had any pre conception counselling either time.....what's that about who does it?

[amanda in CA]

hi, JenJen, I had my son at the age of 38. my transplant function had started to decline slightly so I realised like you that my window of opportunity was getting smaller. my main issue was my blood pressure and I was hospitalised several times overnight for observation. it was obviously considered a high risk pregnancy and I was monitored very closely from the start. i made it to 38 weeks, when they had planned to induce me anyway, but they did it a day or two sooner as they thought that I mY be getting pre-eclampsia. knowing this this seems to be the biggest problem for them ,since the cardinal signs are high blood pressure and oedema, both of which are commonly seen in kidney patients anyway. i don't know if it is different in he UK, but I have a huge collection of ultrasound pictures, because of the close monitoring. the main thing that they were looking for was embryonic and foetal growth retardation, which could ave led to earlier delivery. i also had weekly stress tests done in the last six weeks. barbaric, in my mind, as hey monitor the foetal movements per period of timr. if the baby does not move as much as they wuld like to see, they use a buzzer and you can feel the little bugger wake up and jump in shock. i imagine that he would be doing the morrow (startle) reflex. anyway, by this stage, I felt very protective towards him!

[jenjen]

hi all,
Thanks for everyone for all their thoughts. It is a scary prospect, but even though my function is really good at the moment, like Amanda says, I am looking at the window of opportunity and want to get on with it while my function is still good, because the greatest risk occurs when the function is in the declining stage.

@lainiepop - At my unit (Leicester) pre-pregnancy counselling is offered to any ladies with a transplant contemplating pregnancy. This is because the research shows that the most successful outcomes for mother, baby & kidney are where you are put on a management plan BEFORE you become pregnant. So, this means looking at all the drugs you are on (and transitioning off MMF immunosuppressants especially, which is associated with miscarriage, birth defects etc), looking at your kidney function, getting blood pressure under control, urinanalysis etc and discussing all the options and risks. These consultations are conducted by 1 of the 2 transplant obstetrician specialists we have at Leicester (though this may not be the case at other units)

@Amanda - do i recall correctly that you had fertility treatment? This is something else that I have been wondering about.

My main worry i guess is that i have been doing SO well on MMF, and coming off that and onto another drug is a risk to take when pregnancy may not happen at all IF it turns out we can't conceive due to fertility problems with myself or my partner.

Will keep you all updated! With my creatinine/kidney function as it is, I was told by one of the consultants already that I stand an excellent chance of all being ok, but i still wonder whether it will be worth it. I feel pretty ambivalent about having children - I kind of do want kids, but then I wonder if I want them enough to want to put my kidney/me/the child at risk, if you see what i mean!

[AmandaClare]

That pre-pregnancy counselling is an excellent idea. I had nothing of the kind and it might have been good particularly to get my bp under control before getting pregnant. It's well controlled with ARB drugs but when I came off those (they cause miscarriage) it was never properly under control. Unsurprising then that it went all over the place in pregnancy.

I got pregnant under the care of one unit where they thought I was too old and had too much medical history to get pregnant so never really took it seriously and gave me very little advice. Then I moved to another unit where, at 12 weeks pregnant, the doc stated that the worst case scenario was 'no kidney and no baby'. It scared me witless and it was really a bit late in the day for comments like that!

Best of luck with coming to the right decision for you, JenJen. Sounds like you're going about it in a very considered way.

[Kaylee4187]

Did you find that being a kidney transplant patient meant it took longer to conceive?

[AmandaClare]

@Kaylee, I was 38 so it's a bit difficult to say, as many women are not hyper-fertile by that age.

It took me over a year to get pregnant, and I then miscarried. I was pregnant again within a couple of months with my son.

The thing that made the difference for me was the ovulation predictor kits - you wee on a stick and they tell you when ovulation is about to happen. I ovulate quite late in the month and was getting it wrong with guess-work. But I know other people who've used the sticks and found them useless or off-putting.

[Chris Wright]

JenJen,

As a guy, you may guess that i have never been pregnant...

However, 2 transplanted ladies at my unit gave birth in the late eighties. One of them even had twins.

Both were of course absolutely overjoyed, as indeed was i for them.

Whatever you decide, i hope all goes well for you.

Chris

[AmandaClare]

I misread that Chris, thought you said two ladies had given birth in their late eighties. Now that would be quite something.

[Chris Wright]

I misread that Chris, thought you said two ladies had given birth in their late eighties. Now that would be quite something.

[eeyoretiny]

Hi.
I have been to the counselling clinic back in November and they seemed down to earth letting me know all the facts, a lot of outcomes which seemed worse case. The only thing the were concerned about was that I came off if mmf and back onto azathioprine, which I gad taken for over 15 yrs before I had a bout of rejection. I have today bern for my first blood test since going back on azathaprie last week and am hoping my kidney takes to it again. I am about to turn 31 and felt so alobe with this dilemma until I read everyones pary. Made me feel connected to others and felt I could call upon for suppory etc. THANKS

[bigbuzzard]

HI eeyoretiny

That's one of the great things about this forum - there always seems to be someone else who's been there, done that.

Good luck. Feel free to start a 'new topic' (button on the main page, or just CLICK HERE if you've got any other questions.

[JoSmif]

Hi Jen,

I just did the same swap and my createnine went up from 140 to 200 and then back down to 170. It's not been that long so I'm hoping to get it back down to around the 140 mark again but the docs are not hopeful. Luckily you have a lower baseline so even if it does go a up you should be fine! At the moment I feel 170 is too risky to get pregnant on, has anyone out there got pregnant on that high a creat level post transplant?

Also does anyone have experience in getting createnine down with diet, less busy life style?

Thank you,

Jo