9 weeks pregnant with FSGS. Advice please!!

[Louise1979]

Well I thought I'd already posted this but can't find it, so here I go again. Really I'm just after advice and personal experiences of my situation. I'm 9 weeks pregnant with my second baby and I'm already running into problems. My creatinine is hovering around the 200 mark, blood pressure is good and have about 3+ protein. (these figures are same as pre pregnancy so there's been no jump so far) Basically, the docs say if I want to continue with the pregnancy then I'll have to go onto dialysis as early as next week. This is a big shock as I had nothing like this last time; just lots of monitoring and delivery at 36 wks. First time my creatinine was around 160 and apparently I've now jumped up a level. The thought of daily dialysis is obviously a big concern but I think it's possible, but then apparently I risk not coming off dialysis afterwards. This is only a possibility but one I have to take seriously. What on earth do I do? End a much wanted pregnancy with no hope of another baby or bite the bullet, end the pregnancy and count my blessings? This is a horrendous dilemma and I feel I will be basing my decision on things that may or may not happen. Oh for a crystal ball!! If anyone has had a similar experience I'd really like to here about it (good or bad).

[amanda in CA]

Hi, I am not going to try to influence you either way but here are my thoughts. I had tried for many years to have a baby and kidney failure intervened for a period of time to prevent that. However, I had a transplant and it still didn't happen. With some decline in my kidney function, I decided that the risk was worth taking, given that in the not too distant future that it would fail and that would end my chances anyway. I underwent IVF without receiving counselling about the risks to a baby from a pre-term delivery which I was later informed, was high because of my circumstances. To me, the risk of losing the kdney because of pregnancy was worth it. I don't think that my life would have been complete had I not had a child.

My son is now 9 years old. My transplant lasted until he was two, and I must say that although I love him dearly, I sometimes question the wisdom of having a child. As you already know, they have boundless energy and it is diffiuclt to keep up with them when you are on dialysis. The tiredness and lack of energy are a big factor Then you have to deal with a child when you are having a bad day, and I only have the one child. I really don't think that I could have dealt with two.

I think that if you were only considering a second, then my advice would be to say 'don't do it'. However, given that you are pregnant, I think that you need more advice from the docs. before you make a decision either way. You obviously need to consider the risk to both yourself and the baby, should you decide to continue with the pregnancy. You also need to know what the risks are that are associated with pre-term delivery, since I imagine that there is a high likelihood that you would need to deliver early. It's one thing being on dialysis with a healthy baby without the added strain of a baby that has special needs because it was born prematurely.

Ultimately you need to consider your own health. If dialysis is an inevitable option in the near future anyway, then the risk of starting dialysis that little bit earlier, may be worth it. If it is considered a further off option, then maybe it may not be. If your circumstances are the latter, and you decided not to continue with your pregnancy, you will be able to take some comfort in the knowledge that you will have the energy to fully enjoy your existing child.

As I said, these are just my thoughts, that I hope will help you in part towards your decision making process. Please PM or e-mail me if you want. Whatever your decision, I wish you all the best.

[AmandaClare]

Hi Louise

I'm not sure anything I can say will be helpful but I'm very sorry you find yourself faced with such a difficult - impossible - decision.

As a Tx patient I knowingly took risks with my own health and that of the baby by getting pregnant. My little boy is now at home and fine so far as anyone can tell at this stage, but he was born at 31.5 weeks and spent 8 weeks in NICU.

Personally I wouldn't consciously do it again and am taking care with contraception, but in the unlikely event of getting pregnant again I wouldn't end it. But then my kidney is still functioning well.

Amanda in CA is probably correct that you might need to deliver much earlier than 36 weeks, but outcomes for preemies these days are very good. Make sure you get up to date information on that aspect of the situation.

All the very best with whatever you decide.

Amanda

[Helen Rambaut]

Hi Louise

Perhaps you could also consider who might be your live kidney donor in case you don't come off dialysis.

I attended a tx seminar at my unit last week and it was made very clear that once a patient gets to 20% & depending how they feel - that is the time to go for live kidney donation for renal replacement therapy. The surgeon was careful to emphasise that it is better to do a (live) transplant before the patient gets to the end stage.

If a couple has this option (spousal, family or friend donation) I think that may lessen the dilemma.

Helen

[my_angel]

hi louise ....what a difficult poaition you are in ....i'm not in your situation , you can only do what is right for you ....as has been said already if dialysis is inevitable anyway then you re only bringin it forward ,
both my children were preemies , my daughter at 35 weeks (now 11), and my son at 30 weeks (now 19) ....just to add not all preemies have other health problems ...

good luck i hope you work out what is right for you

[Louise1979]

Thank you for all your replies, you've all been really helpful. I'm going to see the specialist team at the hospital next week, so I'm hoping I can wait until then before making any drastic decisions. In the meantime I'm being monitored regularly by my local renal team. I'm just in complete limbo in the meantime. My husband thinks we should go for the 'sensible' option, but then he's not the one with hormones flying all over. Saying that, I lknopw he'll support whatever decision I make. Not sure my family will be the same, but then they're just looking out for me. Anyway, will let you know how get on. Many thanks again.
xx

[Louise1979]

Sorry, I meant to say that before I fell pregnant my creatinine had been about 170 and they were suggesting dialysis was years off, having prevsously being only a couple of years away. Tbh I think creatinine can fluctuate quite a bit so they don't really know. I would imagine having this baby will either leave me on dilaysis or if I come off afterwards it will be brought forward. Part of me thinks I must be mad because without this pregnancy the chances are I will continue to live a very healthy and normal life as my disease is progressing so slowly. Anyway, enough of my self centred babble

[cazpi]

My kidney function was 40% at diagnosis ten years ago. When I was diagnosed the consultant said "you've got ten years until you need a transplant" (which was bang on - it's scheduled for April!) and "whatever you do, don't get pregnant" - so I haven't, and personally it didn't upset me at all. How I would have felt had I been already pregnant, I don't know, so I can't relly help in your case.

I once thought I was pregnant, (turned out I wasn't) and whilst waiting for the results of the test (which took several days back then) I just accepted the fact that i would probably have to have an abortion.

My partner was vasectomised 5 years ago, which put an end to the issue for once and for all.

Good luck, whatever you decide.

[Louise1979]

just thought I'd post a quick update on the last week or so. Saw renal consultant and obstretic consultant who will be taking over my care from now on. Although they pointed out the risks of continuing as you'd expect, they also pointed out I've been stable so there was no rush to start dialysis or anything so drastic as long as nothing major changes. I went back the following week and they said my creatinine had gone down to 178 and my urea had dropped too and they actually sounded quite positive. Anyway, my bubble was quickly burst today when the consultant rang to ask me to come in and get my bloods done again as they'd gone up (creatinine 198/urea 16). Had the next lot of results today and they've gone up again (creatinine 203/urea 17). 'm trying not to panic too much as it is boxing day so I did eat lots of meat yesterday which can apparently affect results. Just hoping if I really watch my diet I can stop this happening. My consultant thinks my results just tend to be quite variable therefore and that they're just as likley to go back down again to the more acceptable levels. I hope so because if they keep going up then I'm in trouble! Does anyone else find their result are really variable like this as I think mine generally are so maybe it's not even to do with the pregnancy (wishful thinking!!)

[amanda in CA]

I hope that everything works out well for you. One thing that I would ask the doctors is if they expect a creatinine to go up in pregnancy. I was under the impression that blood results tend to improve with pregnany not because of improved function but because of a dilution effect due to increased blood volume. I don't want to scare you but my experience is that doctors will not always voluntarily provide you with information that you would ask a question about, if only you knew to ask the question in the first place (hope you understand what I mean here)

[AmandaClare]

Hi Louise, just wanted to say that I'm glad the new consultants were a bit more positive about the pregnancy. Very best of luck and hope your results go down.

Amanda

[Louise1979]

many thanks everyone. I will let you know how I get on. Sometimes it's good to tell people your story as others may be in the same boat. I get the impression from my consultants that my situation is really rare and therefore it can be years between them seeing people like me which doesn't help when trying to advise what is likely to happen. Saying that I do think I'm in the best place as they seem so much more clued up than other docs who have never come across this.
and yes i totally agree that you need to know what questions to ask. Luckily i feel a bit more clued up this time. (well kind of!)