Thursday, August 31, 2006

I really, really should know better...

than to ever tell parents anything about child development. You see, I only do this for a living - I don't have any actual in-house children, just a lot of theoretical and practical knowledge. But of course that doesn't count for anything.

I'm also tired and sad - my very sweet but quite elderly and, latterly, fairly sick father-in-law died on Tuesday. I think Mr Spouse saw it coming more than I did, in fact - he's much more of a realist than me.

We spent the Bank Holiday weekend at a festival - we've been going, separately and together, on and off, since 1983 (when I was a little teenager, and he would have been my youth leader!). Being the kind of place where people of like mind and
marriagable years get together, there are a lot of couples and babies. I was pretty apprehensive about going - we didn't go last year, as I should have been about 38 weeks pregnant, and we would have stayed away, so didn't want to wander around going "oh, we shouldn't be here". But although there were lots of babies, children, and bumps, I remembered all those years of watching couples, and how happy I am now with Mr Spouse - and tried to trust that we'll be going with our children, one day.

Friday, August 18, 2006

Not too shabby

Well, it took me an hour and a bit to get there, and about 2 hours to get back (the first hour of which was sitting in traffic in a rainstorm), but it was a fairly satistfying visit. The nice nurse is very nice, and very sensitive - you couldn't really do her job and not be sensitive. She asked me if it was OK to talk about the miscarriages - I suppose you need to be prepared to talk about them to go along to an appointment like that, but it does tend to bring it all back. She also asked if we had "any little ones at home" and said if we had another miscarriage they'd do some analysis on "the little one" which made me cringe a little but apart from that, full points. She didn't say "oh, perhaps the second one wasn't a pregnancy" which I had feared.

I asked all my questions apart, I think, from the one about implantation - I am pretty sure I am right about the cramps, since they only started after the first miscarriage (and we were only trying to get pregnant for 3 months before the first pregnancy), and don't happen every month. I don't think our problem is getting the sperm to the egg.

So the story is:

Multiple clotting factor tests, including all the ones that were done before and then some, and lupus etc. - she distracted me while taking the entire arm's worth of blood from my useless vein (I must have been a junkie in a former life) by telling me about the house she is buying where the previous owner was proud of not having hoovered in 17 years. If any are positive they will recommend either aspirin or aspirin plus low molecular weight heparin once I get pregnant. She said she saw where the nice gynae was coming from suggesting I take it anyway, they don't really suggest it but she didn't sound like it could do any harm. They won't do the genetic clotting tests again.

There may be a spina bifida issue. My brother and father have club feet (spina bifida can cause this, or you can have it alone) and there was a question of a cousin with a dimple in her spine. She wants me to take 5mg folate if I get pregnant - she said no need to do it before. I think I may get a prescription just in case, as finding out I was pregnant on holiday, for example, would be needlessly nervewracking. This also counteracts the hyperhomocysteinaemia (MTHFR) so that would be sorted too if I have it.

If all the tests come back negative then they will ask me if I want to be entered into the NKC trial. Since the tests are due back just as my next (but one) period starts (in a month's time) I might be able to get the biopsy done for that in September or October. So it is not all that shabby - she even apologised that they weren't recruiting this month because of too many lab staff being on holiday. So they are only recruiting people who clearly have idiopathic recurrent miscarriage. It being a clinical trial and all. I think they do also recruit from elsewhere in the country, again with a diagnosis of IRM.

I think it is at that stage that they would do a uterine ultrasound too. I'm not entirely clear what they see when they do the laparoscopy, but I would have thought they'd see anything obvious - so I'm not massively worried about that.

They don't do progesterone supplementation - if you have oligomenorrhea they give HcG - but I'm too regular for that.

So, if I see those two blue lines I'm to ring immediately (do not pass go, do not ring Mr Spouse - OK, I think I can ring him!) and they will follow me up. I could, I think, have similar follow up in my local hospital - in fact, it turns out the nice gynae used to work in the Liverpool hospital, as a research registrar - but I think I might use it as an excuse to take more than the odd day off work. I am even thinking of asking if I can go part time for a while (most it can be is 2 months, right?) if (when! when!) I get pregnant again. It does seem as if supportive care is actually the best - and extremly succesfull - intervention for IRM.

I actually feel like there is a way forward - and I have also started to feel more positive about adoption. I don't feel the same urge to get and stay pregnant, though it would be nice. I think that our plan C* (apply officially to adoption agency 6 months after last miscarriage i.e. in November) could still work out, as it is highly likely all my tests will be over by then, and I don't really think IUI is that crucial for us any more.

Things that made me well up yesterday: Seeing an undergraduate student come in with her TWO count them TWO little girls who were both accidents and who mean she's taken 4 years so far to do two years of her degree. Seeing the "baby wall" at the RPL clinic and not believing I'm ever going to have a baby picture to put up there. And then hearing that my father-in-law, in his 80s, is in hospital with pneumonia. The vicar decided he needed to go to hospital, having called round to see them. Mr Spouse (who was also tearful, not surprisingly) is worried he won't come home, because he doesn't think he can. We also worry about my mother-in-law, who is a similar age but more hale and hearty, but who does not tend to go out on her own, as she lacks confidence, so is at great risk of getting very isolated.

*A having been "get pregnant quickly" and B being "OK, we forgot to mention the part about staying pregnant, so let's get pregnant again and keep it this time."

Monday, August 14, 2006

A few links...

This is the Royal College of Obsetricians and Gynaecologists review of care for recurrent miscarriage.

This is very depressing for those of us with older husbands. I sent the link to Mr Spouse but he hasn't commented yet.

This is the four-drug combo study. I think I'd be more impressed if I knew what kind of clinical care the untreated women got - as frequent ultrasound and attendance at an early pregnancy clinic also seem to reduce the recurrence of miscarriage.

and finally this (absolutely, positively not work-friendly) has to be my best search term ever (and a mad search engine, too). No idea what page I'm on as I didn't dare go that far.

Friday, August 11, 2006

Note to self part, er, I don't know

I've got my appointment at the recurrent miscarriage clinic next week so this is a (to be updated) list of questions I want to ask:

Clotting factors: which tests will they do? Check they are doing the MTHFR as they couldn't do that locally.

Chromosomal factors: when will they test Mr Spouse for the balanced translocation? Can he have the blood taken locally?

Elderly reproductive system factors: is it worth me getting my FSH done again (the gynae said not, since it was only taken in January - I imagine she's right - perhaps next year)? What about an antral follicle scan - would this show a decreased ovarian reserve and would that be affecting the miscarriage?

Immune factors: are they still doing this trial of steroids? Does this require a biopsy? On a) day 21? b) a barrier contraception cycle? This will be yes to a) but no to b).

What about this new study of four-drug therapy for recurrent miscarriage? I realise it was a study with no placebo group but would they approve me trying the treatment? If no, would it do any harm to try aspirin (the gynae said it wouldn't)? Progesterone? (I have actually ordered some progesterone cream, partly because - of course - I hope it will help us conceive, but also because I have heard it's good for premenstrual cramps, which continue to plague me some months).

Which aspects of the therapy (steroids, aspirin, folate and progesterone) could I start at day 14 of my cycle, given our difficulties conceiving? If she says "none", would it be worth going onto the higher dose of folate anyway?

If I have another miscarriage, and it's not too fast, is it worth my having and ERPC to try and test any tissue? Would they be able to keep the tissue locally or would I have to go down there?

Oh, and about those cramps - is it possible they are conception cycles, with attempted implantation?

I'm hoping this is going to be an interactive post - if anyone can think of any questions I should ask, I'll add them in.

Notes from the notes:
I have looked into Foresight, but I think we are doing, or have done, everything anyway (vitamins - though there's no evidence anything except folate helps; stopping smoking - neither of us ever did; testing for STDs - got that sorted; heavy metals in hair - erm...)

Agnus castus - I understood that was for short luteal phases, which I don't have. But I'm prepared to be corrected.

The progesterone cream arrived today (about 6 dpo) and is very, er, creamy.

Wednesday, August 02, 2006

On holiday

You see a lovely part of the world, and fall in love with it. You dearly, dearly wish to live there, yet circumstances prevent this. However, there is nothing to stop you from visiting as often as you can. Each time, you are charmed again, you do see there are some disadvantages but perhaps you are a little blind to them since it is, after all, a holiday. Parting is, of course, sweet sorrow. You book another trip the moment you get home, and once again you sigh and wish you could live there.

One comment recently asked me if it was hard for me to work with children, since we haven't yet managed to have any of our own. Mr Spouse was also asking me why I like volunteering with the Brownies (and why I suggested he might do some volunteer work with children, too), wondering whether I don't find it hard to have to give them back.

In other, not great, news, my work colleague who was going to go for her free IVF round on the NHS has had to cancel. I don't quite understand the protocol, but she says she went for an antral follicle scan (is that right?) at the start of her cycle (do they scan before starting? other people tell me they only scan after stimulation) and they found 3 follicles whereas they were hoping for 15? or is it 15 each side? Her FSH was also quite high - they've never found any problems before. She says she was (understandably) very sad at first but now they have resolved to go ahead with adoption from China. We are going to start a two-woman campain for equality of adoption leave with maternity leave (they recently updated the T&C at work and made maternity leave the same across job grades, but didn't update the adoption leave, which was previously inferior anyway).