Wednesday, July 22, 2009

High Risk . . .

. . . is what any pregnancy of mine would be, apparently. Not that this is a big surprise - after all, since I've had 6 losses, I'm under no illusions that a pregnancy would be anything other than high risk for the embryo/baby. But now, it would also be high risk for me too.

Walking home from work through the snow one day in February, just before my 40th birthday, I had a revelation: getting pregnant might not be a good idea. I am insulin resistant, have low thyroid, one diagnosed clotting condition and at least one un-determined one, I have migraines with aura and now high blood pressure. The high blood pressure is also labile - it can have some big spikes, even on beta blockers. After a bit of reading around labile BP, I asked to go on some anti-anxiety medication which, in conjunction with the beta-blockers has brought the blood pressure down to a really good level, but even so . . .

All of these conditions are ones that can get worse during pregnancy, causing risk to me and the baby. I am on five different medications for these various conditions, which carry minimal risks for the baby, but risks nonetheless. After more than 6 years of trying to get pregnant and stay that way, I realised that I might have to stop trying.

This brought a strange mix of emotions. My first thought was: how unfair - after everything else that's gone wrong, now this! My second thought was: this is a way out! At the beginning of this journey, I was NEVER going to give up. I was going to keep going until the menopause. A friend, who is also a counsellor, described her internal image of me as wielding a sword into battle, which is a fair description of my state of mind. I was going to fight anything and anyone to have a baby. But that fight takes its toll - on our finances, on our relationship with each other, on our friendships with others, on my health, on my career, on the rest of our lives - and although admitting defeat would be terribly painful, it would also be a relief of sorts. And having the decision to stop taken out of our hands would be an even bigger relief.

I have second-guessed every decision we have made along the way, wondering if a different one would have brought us the prize, blaming myself, my husband, the medics each time a decision did not lead to the desired end: a baby. I have wanted a reason for our failures - preferrably one that could be fixed, but at least one that would explain the subfertility and the losses. Although there is a large part of me that wants the trying, testing and treatment to stop, it would be so hard to make and stick to that decision independently, without the outside help of some kind of reason or sign. So, in a bizarre way, I almost wanted to hear that we should give up for the sake of my health. My GP, when I spoke to her about it, said that she thought that giving up might be the right thing to do but that she was not an expert and in the end it was up to us - which is true, but I wanted more information/opinion before trying to make that decision.

On a routine visit to the Family Planning Clinic, I mentioned my concerns about continuing to try to get pregnant and the doctor was absolutely lovely. It had never occurred to me before to use the FPC in this way, and I doubt it happens to them very often - a woman comes in who is desperate to be pregnant, looking for advice about stopping trying, when what they must be most used to is streams of young women desperate not to be pregnant and looking for contraception. Of course, ironically, that was me once upon a time! The doctor referred me to a high-risk obstetrician at our local maternity unit. We live in a big city with a huge teaching hospital, so the experts tend to be very expert and I knew I would be in good, experienced hands. All I had to do was wait for an appointment - and waiting is something I am an expert in!

In the meantime, I had another appointment with the blood pressure specialist - a large, pin-stripe-suited, serious and straight-forward man in his fifties (I think), who I like. Turns out, he and his wife have no children - they married late and tried, had treatment, but failed. I told him about my doubts about continuing to ttc and he said he thought that deciding to give up now "might be premature". Hmmm. He had referred me back to the haematologist I had seen when I was first diagnosed with Factor V Leiden, to talk about how my blood pressure diagnosis might fit with that and the rest of my isues in terms of my general health. So I had my appointment with her, and it turns out that she works closely with the high-risk obstetrician in managing pregnancies with clotting issues. She couldn't swear to it, but she thought it was unlikely that the high-risk obs would tell us to stop trying. She was reassuring about my health - noticed that I had lost weight since she had last seen me four years ago and said I looked better and healthier now, at 40 years old, than I did at 36. Needless to say, that made me feel great!!

Finally, we got the appointment with the high-risk obs. She was fab - warm but no-nonsense sort of person. She pulled no punches about our chances - low chance of conception and high chance of miscarriage. But, if we do get an ongoing pregnancy, although it would be high-risk, and we would be in and out of her office like yo-yos for tests, scans etc, she thinks that with the right observation and management, I could come out with my own health and a healthy baby. My GP had warned me that these high-risk chappies can be a bit gung-ho - after all, they are used to being presented with women who are three months pregnant and have just found out they have cancer and my problems could seem pretty minor in comparison - so I was a bit concerned that her advice was on that basis. I asked her straight out if that was the case. She laughed little, and then said quite solemnly that if she really thought that my life or a baby's life was at serious risk, she would not hesistate to tell me to stop trying. I believe her!

She referred me on to have a hysteroscopy, which is scheduled for next month, and I'll have an endometrial biopsy which will be analysed by the big miscarriage clinic in London. Then, if all is well, we will have a round of donor eggs. This will be our last go, frozen embryos excepting.

Of course, now there is sw.ine fl.u, and the advice from the NCT to consider delaying conception till it's all over. Since there is the possibility that this pa.ndemic could be with us for 3-4 years, delaying for that long is not an option for us - we've waited long enough! But, considering my profession and how generous 5 year-olds are with their germs, I think I ought to delay until either I've had the virus or the vaccination, whichever comes first (and if neither kills me!). I'll be making an appointment to see my GP to ask about getting in early with the jab, but I go back to school in mid-August and I don't like my chances of dodging the bug for very long once I'm with the new intake. Watch this space!!

Wednesday, January 14, 2009

Still Here . . .

I'm just about human these days, with the help of a support group and a bit of time. I had a good chat with the consultant at our more local clinic, who helped me to feel that our original post-mega-cycle plan (the one we were going to follow if it turned out all my eggs were duff, like I thought they would be) is still reasonable. So we're back to the idea of having a hysteroscopy and an endometrial biopsy followed (depending on the outcomes) by a cycle with donor eggs.

Before I can have the hysteroscopy though, I need a 24 hour heart monitor to make sure the palpitations (which I'm still having occasionally) are nothing sinister (oh please G*d, let them not be!) and for my blood pressure to stay normal for a while. The beta blockers didn't seem to be helping a lot, until I realised that my GP had me on a starting dose - which you're meant to work up from. I'm still not quite up to the minimum maintenance dose now, and the BP is definitely lower.

Bizarrely, having upped the dose just before Christmas, my BP went down to a great level for about three days over Christmas Eve, Christmas Day and Boxing Day - normally a relatively stressful time. Then it started to go back up again, until, by the end of the holiday, it was nearly back at borderline/high. And then the very wierdest thing happened: I went back to work and it started to go down again. I'm fairly sure most medics wouldn't recommend spending 6 hours a day, 5 days a week with 25 five and six year olds as a way of lowering your blood pressure, but for some strange reason, it seems to help mine - I suspect it's the constant exercise and the lack of opportunity to eat, as it can't be the lack of stress!!

So, we have a plan - one that isn't age dependent for a change, which is just as well because I turn forty in about three weeks. Ugh! Not a good age in this IF/mc business! Still, I'm taking deep breaths and I've been practising being forty for a wee while - anytime it's come up in the last six months, I've said I'm forty (as long as it isn't anything official, you understand - that would be silly!). I'm hoping it'll ease me in and I'll avoid the nasty shock my husband got when he turned forty - he was just about getting over it as he turned forty-one.

I'm celebrating by heading to one of my favourite cities with my husband and Mum and Dad, and meeting us there will be my wee sister and her husband and kids and my best friend and her husband and kids. The grown-up girls have a spa afternoon planned and we have meal booked at a hotel near the B&B we're ALL staying in. I'm a bit worried about all the family stuff - nothing like having your nearest and dearest turning up with their kids to throw in to contrast your lack thereof - but I love them, and the weekend wouldn't be the same without them. The really major fly in the ointment might the arrival at the meal of a good friend and his wife. They live nearby, and it'll be lovely to see them, but I'm really worried they may have "baby news" and that would wreck my night. We'll see - it's too late to uninvite them. I'll just have to be a grown-up - since I'm forty!

Tuesday, November 18, 2008

Never.Ever.Again!

The "fling everything at it" cycle was a spectacular failure. We got one good egg out of five, but the resulting embryo was slow-growing (did they manage to ICSI it with a duff sperm?) and we got a BFN. Oh . . . and high blood pressure and palpitations. So now I'm on beta blockers and freaked out about my health, as well as utterly miserable about the failed cycle. Plus, my theory that all this loss and subfertility was down to having bad eggs is now questionable - 1 in 5 normal eggs is the average for someone who's 40 - which is what I'll be in early February. So our fallback of donor eggs is now also questionable.

And tomorrow I return to work, where my closest work-friend just announced last week that she's pregnant. Joy abounds!

More details on the cycle from hell when I can bring myself to relive them . . .

Sunday, October 19, 2008

And so it begins . . .

We've started! I am now on day 3 of stims. Downregulation took a little longer than expected, but nothing excessive. Main problems so far have been trying to arrange accommodation near the clinic (for it is a long way from home) while not knowing when we need to be there and my total inability to make a decision on IVIG.

Oddly, it seems I am happy to inject myself with a range of hormones and anti-coagulants and to pop steroids and to have a large needle shoved up my hoo-ha to remove my eggs while under a sedation that leaves me conscious but in a state of forgetfulness, but I am wavering on the 3-4 hour infusion of a blood product that carries the risk of anaphylaxis, heart and lung problems and infection with everything from Hep A to vCJD.

Even more oddly, it's the vCJD that freaks me out the most. Apparently, the stuff will have been filtered, heat-treated and assaulted with detergents and alcohol so the chances of bacteria or viruses remaining are small, to say the least. But prions are more slippery customers and there is still a "theoretical" risk that they could get through. Plus, to date, prions cannot be tested for in blood. For this reason, the donors used come only from countries with no reported cases of vCJD in their native population and folk who have lived in countries that do have a history of cases (that would be mainly the UK) are not allowed to donate, and no IVIG is produced at all in the UK - it all comes from elsewhere (the US in the case of the stuff I'd be getting, I think).

It was my wee sister that pointed out that, since we live in the UK and our staple diet in the 80s/90s (when mad cow disease was rife) was mince and sausages, I've probably been exposed to all the prions I'm ever likely to need to give me vCJD if that's my fate. Frankly, it seems mad (ha ha) to worry about this extra, theoretical exposure - but I am.

Confession time - I am a hypochondriac. Not the type who secretly likes to be ill and visit the doctor, but the type who is terrified of illness to the point of it being an anxiety disorder. So I am also worrying about all the other risks from IVIG - and all the other risks from the various drugs I'm taking, many of which seems to carry contraindications relating to other drugs I'm taking, or to other conditions I have. Geez - I must really want a baby!

Next step is the Day 5 stims scan - to see how the follicles are coming along. Am totally open-minded on this one. My past experience would suggest there'll be lots, but my AMH level suggests that might be hopeful. It's a fine line for this treatment - my last IVF was nearly cancelled before egg collection due to over-reponse and I surely don't want that again, but too few would probably mean that the CGH test might not be feasible. We'll see . . .

Sunday, September 21, 2008

Here Goes Nothing!

Wow - I really haven't been on here since July?!

Well, not a lot has been happening - or rather, it has, but none of it has been very interesting until now. I have a new class at school - taking a while to bond with them, partly, I think, because I liked the last lot so much. And we're about to do a BIG IVF - with bells and whistles.

We're in the early stages (haven't even started downregging yet) of a cycle that will involve immune treatment and experimental testing of the chromosomes in my eggs. I'm terrified! And so pessimistic that I'm not even confident that the cycle will go ahead.

I am certain that this cycle will not result in a baby - I'm way past that kind of optimism. At best, I'm hoping for some answers as to why I've had such a hard time getting and staying pregnant. This might give me some clues. If we actually get to the stage of getting eggs (my last and only cycle was almost cancelled due to over-response, as were all of my Clomid cycles but then again, my AMH levels are now only just the right side of normal), then we might find out that they're all duff - that would explain a lot. On the other hand, if there's a couple of normal ones in there, and they make it to the point of going back in and I still don't get pregnant, or I miscarry again - that suggests that I'm not providing the right environment somehow. Not a lot I can do about that - though a cheery report on the BBC today linking obesity and recurrent miscarriage has me wondering - not that I've actually been obese at any of the times I had miscarriages, but I am definitely overweight and carrying it round the middle. Hey, one more thing to add to the list of "reasons I have f*ck*d up my own reproductive life" - 'cos it's not like I was casting around for reasons to feel guilty and self-blaming here.

On the other hand, the cycle might not bring any answers at all - just large hole in the bank balance and a sense that we really should have done something else instead. We can but try! And at the moment, I'm trying to remind myself of the reason I chose the name of this blog - my motto: "hope for the best, prepare for the worst and expect the unexpected". I'm doing really well at the last two, but not really getting to grips with the first. Watch this space . . .

Thursday, July 3, 2008

On Judgements

I was watching "Grumpy Old Women" the other night and one of my pet peeves came up. Firstly, so much of the program was about kids - "Grumpy Old Men" seemed to be about the world in general, whereas this seemed to be about family. This reminded me that we are a couple, not a family - to be a family requires children. My second issue (and the pet peeve) was the whole "how can she know anything about children when she doesn't have any?" thing. 

This came up in relation to "Supernanny", who doesn't have children of her own but appears on TV telling other folk how to bring theirs up - and a very good job she does of it too, in my opinion, but clearly not in the opinions of some. She and I have a couple of things in common - neither of us have kids and we've dealt with more children in a few years than most people will encounter in a lifetime.

I sat down and worked it out. In the 12 years I've been teaching, I have taught around 250 children. Apart from the first class, who I only had for 6 months because I was covering long-term sick leave, I've taught each of these children for at least a year - about 110 of them, I taught for 2 years. That's a long time to spend 6 hours a day, 4.5 days a week with someone. I think I've got to know a lot of them very well. And since I've taught in the same school for 8 of the 12 years, mostly at the Primary 1/2 level, even though they leave my class I continue to see and chat to them till they leave the school. 

Do I know each individual child better than their parents know them? No - absolutely not! Do I know children in general better than many individual parents knows children in general? Hell, yes! I've had 250 examples of childhood behaviour and 250 opportunities to see what works. So I get really upset when people (especially people who know me) imply that I can't know about children because I don't have any. Interestingly, none of the parents of the children I've taught have made this implication - on the contrary, they sometimes ask me for advice on how to handle things that aren't even school-related! And when that happens, I feel deeply honoured. 

On the baby front, I have friends who, before they gave birth to their own child, hadn't even held a baby - never mind changed a nappy. I supplemented my pocket money from my early teens by babysitting. From the age of 16 till when I left home for Uni (and occasionally while back during the holidays) I babysat for a family with three wee girls. I changed nappies, gave night-time feeds, soothed crying babies. I have helped out with nephews and nieces and friends' babies since then. But again, I've had that same "you can't possibly know" thing - ironically, mostly from the same folk who hadn't had anything to do with babies till they had one themselves. 

Of course I don't know what it's like to be a parent - though I have probably spent more time imagining it (good and bad) than most. But I DO know about children. I think this is one of the things that makes me particularly sad that we have failed (so far) to have any. A couple of dear friends have commented on how unfair it is that I haven't been able to become a mum, because I want it so much and because they think I'd be a good one. I hope I would. I think I'd have as many hang-ups as the next person and I know I would make mistakes, but I think I would be a good enough mum - and CM would make a great dad too. And it does feel very unfair that we're not getting the chance.

Don't get me wrong - I am not anti-parent at all (if I was, why would I want to be one so much?) - but I am anti the kind of parent that thinks that simply by producing a child they have been endowed with some kind of instant wisdom and omniscience. There is a story in Jewish mythology that Adam had a wife before Eve. She was created in the same way as Adam - out of the earth - and her name was Lilith. One version of the myth is that on giving birth to a child, she believed that she had created life all by herself and demanded that she be worshipped for it. Remind you of anyone? 

This has been a very whiney post, I think. But if you can't whine on your own blog, where can you? Plus, I think this problem goes much further than me. I'm privileged to know a few women who are in the same situation - who have been trying and failing in the mum stakes for quite a while. What strikes me about them is that they have thought more about what it means to be a parent, how to be a good one and how they would parent if they got the chance than many actual parents I know. And they would make amazing mums. It's the one thing that gets me through the "maybe this is a judgement on me" worries about infertility and loss. I only have to look at these other women to know that if anyone's making judgements here, they're making the wrong ones!!

Interestingly, research seems to support this. The BBC reported that a study on surrogacy presented to the European Society of Human Reproduction and Embryology in 2002 found that "mothers who had relied on another woman to carry their child tended to show more warmth towards their babies than mothers whose child was conceived naturally". No wonder - they'd probably tried just about everything to get there and had years to contemplate the role of a mother. Nothing would be taken for granted!

Saturday, May 31, 2008

The Weather Is Sunny But I Am NOT!

It's been a while since I posted. Lots has been happening and nothing has been happening. The IUI failed (surprise!), we got an offer of donor eggs and had to turn it down and I discovered that one of the clinics we've visited in the past is now offering a world first in genetic screening of embryos.

Having been so sure that not getting pregnant on the IUI was only going to be a blip on my radar after all that has gone before, I was actually pretty upset about it. And call me stupid but, for the first time in our more-than-5-year-marathon of trying to conceive, it occurred to me that finding out that you're not pregnant when you get your period and your hormones are making you feel miserable anyway is a little inconvenient. So I spent about a week in a seriously bad mood, swinging between wanting to cry and wanting to snap someone's head off. A fun time for all! And the move back into "trying to conceive" after about a year and a half of enforced time out has brought back a lot of my sadness and jealousies about my inability to join my friends in the Mum Club.

After the negative result, I'd called the clinic to see where we were at with the donor situation and heard that things had "dried up" a bit on that front. In an attempt not to spend too much time wallowing in the failure and the lack of anything to follow it up with, I threw myself into work and committed myself to even more than I had already. Keeping busy and being around people are my best defences against depression and anxiety - and there's nowhere better for keeping busy and being around people than a school - and sometimes nowhere worse ;-). I've put my career on hold for more than 5 years - not that I'm hugely ambitious, but progress of some kind is good. I'm not after serious promotion, but there's a couple of things I'd like to try and I kept putting them off because it would be too hard to do them while pregnant (ha!) or having treatment. The extra responsibilities I've had this term have helped me to make some decisions about my future in teaching and have made me feel a bit more useful about the place.

So it was ironic that I then got a call from the clinic telling me that they had a donor and that, if we went for it, everything would be happening at exactly the busiest and most inconvenient time of the term. After a bit of discussion and soul-searching with CM, I had to say no. I can imagine there are people who would think I'm nuts for deciding that way, but what it came down to was this: saying no to the donor just means we don't get this donor - another one will come along and we will get our chance - but taking time off work and having to offload my responsibilities onto others, just when they are also at their busiest, would guarantee that I'd blown that chance and it wouldn't come again. 

So much of what I have tried has failed over the last few years. This term's responsibilities aren't necessarily what I want for the rest of my life and I haven't necessarily shone in everything I've done - but if I make it to the end of this term then I won't have failed in them. And that is so important to my self-image right now. As I've said before, I could do every treatment under the sun and still not have a baby and at the end of all of this, regardless of baby or no baby, there will still be me. Whether I become a mother or not, my state of mind is everything to how I deal with what comes next.

The day after I said no to the donor cycle, a friend told me that a new genetic screening method had just become available at a clinic I'd had contact with in the past. It's a treatment that would give us answers, which is something I want almost as much as a baby. If our embryos didn't make it to testing or all tested abnormal, then we'd know that this was our problem. If we got a normal one or two, we'd shove them back and if it didn't work, we could draw some conclusions about my ability to create a proper environment for successful pregnancy and decide whether surrogacy might be a good idea. Oh, I know that normal embryos don't always implant even in "normal" women, but we'd still know that we could create normal embryos. If we got a normal one and I got and stayed pregnant - well, we'd thank our lucky stars and probably never go near a fertility clinic ever again. So we have an appointment with them at the beginning of July.

At the time of hearing about the genetic thing, I thought it was fate - I'd get a chance to see if we could produce our own genetic child before trying donor eggs. However, after a bit of time, I realise that it doesn't matter which opportunity comes up first - I'd go for either of them. Basically, I want to be someone's mum and I want CM to be a dad. And after all this time and loss and failure, I find that I'm not too fussy over how that happens. So hopefully we'll be doing something soon. There's the small matter of an ankle that needs an MRI and a bowel that needs checking for IBD, but both consultants have given me the green light to plough on with fertility treatment regardless and I'm not going to argue with them!

But I still feel flat and old insecurities are creeping back in. I find myself again: watching for signs that friends are pregnant; worrying about social gatherings and whether there'll be kids, or an announcement or whether all anyone will be talking about is their kids; being sensitive about comments made by my nearest and dearest about their kids; feeling resentful about what others have that I don't; wondering if people are leaving me out of things; wondering if friends are bored of / embarrassed about / irritated by our ongoing sadness; etc, etc, etc. And to top it all, I'm planning my 40th birthday. OK, it's not till February next year, but when I started out on all this it was "babies before 35" (and had number 1 worked, I'd have managed that), then it was "babies before 38", and then "babies before 40". Well, I'd have to get pregnant NOW to do that, and since I'm on day 3, that won't be happening.

So the sun may be shining outside, but it ain't doing it for me.