So what the futility happened?

The WTF appointment with Dr George was over three weeks ago now, since when I have been Refusing To Think About It. You’ll have to excuse me. I had a lot of ‘Holy fuck I nearly died’ to process, which created massive interference with the ‘Shit shit shit shit SHIT I miscarried 6AA’ data stream. Basically, my hard-drive needed serious de-fragging. I think I cobbled together a parallel-processor out of tinfoil and spit – it may burst into flames mid-post – so onwards! Let me see what I can dredge out of the dark backward and abysm of time.

(From semi-educated computer jokes to Shakespeare in one sentence. I rule).

We had emailed Dr George pre-visit, so as not to waste the entire appointment in a ‘previously, on House‘ montage. The first thing he said was ‘I see you’ve been in the wars!’ with a welcoming grin, which instantly dissolved into gloom and he added, solemnly, that actually what we’d been through was horrific, and he was truly sorry. He’s normally a cheerful upbeat sort of chap. I see I defeated him. I felt a complicated cross between vindicated and miserable about that. It’s nice to be taken seriously but not very reassuring to be The One That Makes Doctors Gloomy.

To address the DVT and dramatic pulmonary embolism problem, Dr George agreed that whatever my test results up until now showed (i.e. absolutely bloody nothing that could predispose one to thrombophilia) (apart from a tendency to sodding well clot anyway, so bloody there), I clearly had a severe, pregnancy-related thrombophilia problem. He wanted to wait and see what the Haematologist had to say about it before we did anything else, in case I needed more aggressive treatment than prophylactic doses of Clexane, for my own safety. And in any case, I needed time to recover and make sure there was no lasting heart or lung damage (jolly conversation, this). On the other hand, the Clexane should have been enough to protect 6AA, especially as my troubles began when I stopped taking the Clexane. Which, incidentally, will never ever never happen again – me suddenly stopping anti-coagulants after the end of a pregnancy. Hell no. Dr George was quite firm about that. The thing is, the lack of diagnosed serious causes of thrombophilia had lead everyone, everyone, to believe the clotting was only a threat to my teeny-tiny embryos, and not in the least to me. Hahahahahahah.

And then we turned to the sad demise of 6AA. Who had a perfect set of matched chromosomes, and no business failing to develop at all. Dr George declared that waiting to day 5 and having CGH performed on the survivors had been the right thing to do. To recap, back in July:

  • Thirteen eggs were retrieved during, uh, retrieval. Dr George was pleased about this. It promises well for future IVF, apparently.
  • Nine of those eggs fertilised on being placed in the company of H’s sperm – this is also good, given my age.
  • On day three, we had six embryos that looked worth culturing to day five. So we cultured them to day five.
  • On day five, we had four embryos left to biopsy, one excellent-looking, one reasonable, one a little slow, and one shabby little creature they could only get one cell from to test.
  • Twenty-four hours later, we had the results. Normal 46-chromosomes-in-pairs 6AA and 6BA, one wildly abnormal one (still alive, still growing strongly) which had three trisomies and a monosomy, and the shabby little creature couldn’t yield a result and anyway had conked out overnight. So we transferred 6AA and froze 6BA.
  • Consider, if we’d done a day three transfer as per standard, we’d’ve had a one in three chance of transferring a normal embryo, a one in two chance of transferring a non-implanting dud (and a possible chemical pregnancy, if it’s true embryos do slightly better inside one, as shabby little creature was hatching and looking to implant), and a one in six chance of transferring a badly damaged future miscarriage (best scenario) or stillbirth (horrific worst scenario).
  • Nevertheless, 6AA died anyway.

So why did I miscarry, given the Clexane for clotting and inflammation, the Metformin for wonky blood-sugar, the Prednisolone for my psycho immune system, the Intralipids ditto, the Progesterone pessaries to keep my uterus from shedding? What had prevented a normal embryo from developing normally?

It is possible the clotting issue was the problem, and prevented 6AA from creating a decent placenta. A human embryo spends its first week or so, once it has implanted, house-building rather than developing itself, so the gestational sac and yolk sac grow first, to nourish the embryo while it works on tapping maternal resources via a tiny little proto-placenta, and then and only then gets to work on itself. If placental development had been botched by micro-clots in my uterine capillaries, 6AA would’ve stalled. And in fact, we had a lovely gestational sac and yolk sac and no bloody visible foetal pole.

It is possible my psycho immune system was not sufficiently suppressed after all (I seem to be Queen of borderline or inconclusive test-results and nevertheless violent symptoms) and there were enough NK cells roaming my uterus to attack 6AA’s placental intrusions, with results as above. There’s a further test (expensive, natch) they can do, testing my NK cells against various combinations of Prednisolone, Intralipids and IVIG, to see which mix suppresses the NK cells best, and then use that. We are thinking about that.

A very very unlikely possibility (and Dr George was adamant this was unlikely) was that I simply wasn’t absorbing the progesterone from the pessaries very well. You apparently can’t really test for this as blood levels of progesterone don’t match the uterine levels of progesterone, as the stuff in the pessaries is absorbed by the uterine area primarily. Or should be. My uterus is abnormal, however, what with the adenomyosis. ‘Next time,’ said Dr George, ‘we could use progesterone-in-oil injections instead, just to be sure. They’re a bit of a pain, though.’

And it is possible, if apparently also very unlikely (H and I have both been karyotyped and genetic issues do not seem to run in our typically-non-miscarrying families) 6AA, despite the 46 chromosomes and healthy go-getting attitude, was genetically non-viable on a more subtle level. I don’t know. Nobody knows. There was nothing to test.

We then discussed trying again. Should we ‘bank’ 6BA, our frosticle, and do another fresh cycle to gather up a couple more healthy embryos before I get all perimenopausal? Or transfer the frosticle first and bother with more IVF only if ‘necessary’? H has been rather pro the first option, not least because he always wanted two children, and therefore having a few spare healthy embryos in store and ‘only’ 38 years old, for when I am, oh, 41 say and ‘ready for seconds’, would be sensible. I had been all ‘two kids would be splendid’ up until a couple of years ago, whereupon a combination of ‘I’m too old for this shit’ and ‘I’m too ill for this shit’ and ‘I can’t go through all this that many more times’ put me squarely in ‘one. One would be perfect. One would be a fucking miracle‘ camp. With the proviso that Lord knows how I’d feel about it once I had the Precious One, because I am not stupid.

Dr George was of the opinion that given my clotting issues, we’d want to avoid the oestrogen stimulation of fresh IVF cycles if it wasn’t necessary. He would transfer 6BA first, and then rethink if that ‘doesn’t work out’. This does rather mean H too would have to become more reconciled with the idea of an only child, because if the FET did work, it’d be maybe two years before we’d be up for another IVF, and I’d be 41 and mouldier. Even though the women in my family have late late menopauses and both grandmothers had naturally conceived healthy children in their forties. And would I want to take Cute Ute the Despoiler back into cycling? With a very small child to care for? Remember I call her The Despoiler for more reasons than the recurrent miscarriages.

Anyway, if I am behind any plan, I am behind the FET plan, and see how I feel about a fresh IVF after that. But I am very skeeved about trying again.

Plan, such as it is: Wait and see what Haematologist says. Contingent on her opinion, consider further NK cell testing. Do a FET using recommended anti-coagulants, immuno-suppressants as revealed by test, and progesterone-in-oil rather than pessaries. And see what happens.

To which plans I would only say, why the fuck is everyone being so gung-ho about this? What about me? What about all those miscarriages, including one of a sodding perfect embryo? Why are you all so keen to do this to me again? The hell is wrong with you all, you heartless arseholes?

I’m going back to my bat-cave, and walling myself in.

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25 responses to “So what the futility happened?

  • starrhillgirl

    You know, May, hon, that for several years now, people have been telling me how brave I am, trying and trying again with all these shitty fertility treatments. I have never really understood why. Because it just seemed like the thing to do. But post-this-post-reading, I think I sort of get it. What you have done, what you are thinking about doing, is pretty fucking brave. All my love coming over the ocean and through those walls to you.

  • Nicky

    Oh, May, I am so sorry for everything that has happened. You’re right, it’s more than enough to make anyone want to wall themselves into their batcaves.

    Has no one considered the possibility of asking a surrogate to carry 6BA? Any fertile, kind, generous, female relatives who’d consider helping you given your horrific pregnancy history and current health status? I’m across the ocean and feel enough sympathy to wish to spare you more baby-related heartbreak. At the very least, you said your mother had $$$ and offered to help with baby expenses, it might be possible to pay someone to do it! Just a thought.

    • Lilian

      I was wondering about this (surrogacy), too. I know you’ve said before that you wouldn’t really consider it, but maybe it might be worth thinking about in light of recent events. I don’t know. Sorry, I’ve got my Mrs (try to) Fix-it hat on again.

  • sheila

    I’m a bit concerned about the lack of attention being paid to ensuring May doesn’t keel over again and also the lack of attention to May’s mental well being through all of this. Surely these (together with the obvious immediate medical / haemo requirements) should be the first priority? Hmmmmm….. I think you will need supplies for the bat cave until the medical world re-prioritise – I can volunteer chocolate?!

    • Lilian

      Me too (concerned about the lack of attention to May’s mental health, etc.) Has anything more been thought/said/sorted out about counselling for you and H?

      Thank you for letting us know how it all went. Thinking of you all. L x

  • a

    I would completely understand if, at this point, you decided “this motherhood thing is too dangerous to pursue.” So, while you’re walling yourself into the bat-cave, try that idea on for size and see how it fits. Also, don’t let the bats bite you – you know the one that bites you will definitely have rabies.

    As starrhillgirl says – you have been very brave.

    Hey, and if you do decide to venture into the shark-infested waters again…why don’t you have a complete blood transfusion about once a week? Or I know – they could hook you up to a lovely hemophiliac for the duration of the pregnancy, as a sort of symbiotic relationship. They pass you non-clotting blood, you give them some clotting blood. I mean, as long as we’re throwing out crazy ideas…

  • Amy

    Sending love into the bat-cave.

  • Melissa

    I seriously can think of nothing helpful to say right now. I’m so sorry for this, for all of this. You must feel like you’re being torn apart with all of this. But as the first commenter said, you are so brave, so strong. I know you don’t feel like it now, but you are. And you have a lot of people around the world that love and admire you and are really pulling for you. XOXO

  • Hat

    I want to say “stop just stop please for the love of sanity stop”, but that decision needs to come from you really. I am sure that everyone is being gung ho thinking that is what you want. Everyone wants the positive optimist – even when bad things like Cancer happen – (see the Documentary about the Pink ribbon campaign) no one (in the medical community) wants to believe there is not a fairytale ending for all cases. and yours is no different. – But sometimes sh*t happens and its not a fairytale and it sucks and the worst case scenarios happen to good people. so do scroll over to the nonmom side see if it couldbring you peace and better health. There is more to life than becoming a mother. But its a scary bumpy ride to that camp too.

  • wombattwo

    OK lovely, I would say that people are being gung-ho about this because that’s their job. You’re paying them to find ways to get you pregnant and that’s what they’re trying to do. In the case of Dr George, and I mean this with respect to him, that’s probably all he knows how to do. The whole saddle embolus/DVT thing is not something he knows how to deal with necessarily. So he’s talking about plans because that’s familiar to him, that’s far less threatening and easier than thinking about why you had such a horrendous complication.

    See what the haematologist says, but what do YOU want? The power to make this stop, or to carry on is in your hands. It’s a choice only you can make. To be honest, the thought of you cycling again petrifies me. Let alone the thought of you going through further miscarriages. What is it that you want to do, deep down inside?

    I hope that the fact I wish this wasn’t happening to you goes without saying.

      • korechronicles

        Wombattwo is a very wise wombat.

        • carol

          I agree with both Wombattwo and Hat. May, please, please look after yourself and put your health first. The very idea that anybody can seriously be suggesting you do anything else at the moment after everything you’ve been through takes my breath away.
          Surrogacy isn’t ideal or very easy in this country, we’ve been trying to find a surro for over a year now because my own body’s got so many flaming health issues. It might be worth a thought, perhaps? (Feel free to shoot me down in flames if this isn’t appropriate). At the moment, though, I really do think you need to concentrate on you and just trying to get a bit better physically.
          Carolx

  • Anonymous

    Just spend some time in the bat cave. As much as you need and then some more. Only then think about things.

    Good thoughts and wishes to you and H.

    K x

  • Persnickety

    So much not fun-ness. I think that people are being optimistic because they are within the IF process and because patients generally don’t like doctors being negative about treatment. And because they assume you want them to be. It can be very frustrating, because everyone wants to know what/when you are doing next, and what you really want to do is think about whether anything happens at all. This is not me telling you what to do, it is from my own current experiences, and irritation.

    I can see the point from their perspective, you have only had one IVF, and each one is its own little experiment. But from your point of view, that one was sufficiently horrific. If you don’t want to repeat that, it is perfectly understandable.

  • Betty M

    Oh May – how grim it all is. I expect Dr George and everyone else just assumes you want to keep going and they want to be “helpful” and make plans, devise strategies and generally keep busy, busy, busy so nobody has time to step back and think about why the hell you are still on this particular treadmill or makes them really focus on why you might legitimately want to stop. And you might not want to stop but I do think they should at least allow for the possibility in all the activity. Hopefully the counsellor will come good. X

  • Jo

    I wish I had something helpful to add. It’s no wonder you are hiding (I did too after each loss), or that you are terrified of trying again. Miscarriage is ridiculously hard, and loss after IVF has an added component of unfairness. (We just spent HOW MUCH for this?!?) but add in life-threatening complications, and…. Like I said, no wonder. I have no advice or answers, just lots of love headed your way.

  • Mina

    I have been coming here to leave a message for two days. I still do not really know what to say. What on Earth one might say to the childless mother who had her heart shatter in million pieces TEN times?
    The people from the clinic are paid to DO stuff, so this is what they are trying, to do. Even if all they could do was to stumble in the dark, they would still do it. I suspect that regardless of the pay, no one in their right mind would sit by and not try to do their everything (within possibilities, of course) so that you get your baby in your arms. We are not paid and still would do anything we could just to try and make this massive heartbreak of yours a tad lighter, and the main idea that comes to mind is that this wrong could be ‘fixed’ by a live baby wriggling in your arms. This is why I think people near you are devising plans to push you forward, because presumably, at the end of this ordeal, there is a baby waiting for you.
    You, as in May and H, are the one who know, or at least who need to decide, what it is that you want. You’ve got to chose among various paths, so far I can see these:
    - the one with getting healthy to get to live a life without children, or
    - the one with getting healhly to get to live a life without children of your own, but with adopted children, or
    - the one with getting healthy to get to live a life with children of your own, but not carried by Cute Ute the Despoiler, or
    - the one with getting healthy to get to try again the pregnancy thing (with various outcomes), or
    - the one with not getting any healthier, just drinking your way into oblivion where children and spouses and health do not matter (although this is not a real choice, people end up here just because the pain is to great and the numbing is just leading them to this dreadful place), or
    - the one where you do nothing, just go through motions, go to work, get back home, fake a life until the decision is made for you one way or another.
    And there are more, but I have blathered on enough.
    When the grief is slightly blunter, not this sharp and raw, you will see things with different eyes. And you will see what you must do. Until then, we’re here for you. As always.

  • QoB

    I had a comment but my work PC ate it. In summary: it is horrible that you are having to deal with these possibilities. I hope you have the best information (haemo, reproductive, mental health) available to you to help you make these decisions.

  • Twangy

    Words fail me, too. I can only send love after you into the batcave and hold my thumbs and hope for the best.

  • korechronicles

    It’s taken me two days to write because I cannot find the words either. It’s just beyond unfair.Sending my best love and hugs across the planet all the way to the bat-cave.

  • Jenny F. Scientist, PhD

    I keep coming back because I just don’t know what to say. I think at least part of it runs: it’s one thing to know that pregnancy is risky and people have complications and even, god forbid, die. In general it’s rather comforting (to me) to know that 0.1% of people have X happen. It’s another thing to *have* one of those life-threatening complications. It’s a natural, human (psychologically validated) thing that things that have happened to us/ people we know seem more dangerous, closer, and more likely to happen again. Alas that it’s actually TRUE here. And this is the kind of situation where I personally find statistics to be completely not comforting, because one is suddenly on the wrong side of them, and short of a crystal ball there’s no way to tell if one is the group to whom it WILL happen again, or not. In other words AIEEEEEEEE.

    Okay, in an ideal world one’s healthcare would take care of nasty (i.e. annoying and expensive) things like IVF in a timely and efficient manner, or at least Lloyd’s would write a money-back policy on it. But if you NEARLY DIE they should *definitely* give your money back.

  • Silver

    De-lurking here to say, first, how sorry I am about all the crappiness – you are following in my footsteps – we have been to the same specialists and have many, many of the same issues and I know at first hand how much it sucks. My immune cycle with genetic testing didn’t end quite as scarily as yours but it did involve an emergency hospital trip, lots of tests, medication and a lifelong diagnosis) and it left me (and many around me) questioning whether getting pregnant again was sensible. Noone can answer that question for you – it’s so personal. I ended up getting LOTS of good medical opinions from NHS specialists (a haematologist, a blood pressure specialist and a high-risk obstetrician – can definitely recommend you try and get to speak to your local versions of the first and last of these before making big decisions). Second, I may be able to suggest another possible reason for the losses. I had 6 losses and lots of failed treatment and a whole nest of health issues. I tried all the usual miscarriage “fixes” and nothing worked. I have a clotting condition which was managed with aspirin and clexane, low thyroid treated with thyroxine, PCOS treated with metformin and had immune treatment as well. I had a genetically normal embryo transferred on an immune cycle and it didn’t even begin to implant. We had been signed up on a donor egg waiting list on an “it can’t hurt” basis, but when the genetic results came back normal and even that didn’t work, I couldn’t see the point of DE. However, a consultant with a specialism in embryology explained that sometimes eggs and/or embryos can test normal, genetically, but the cytoplasm of the egg – which is what powers the resulting embryo and acts as a kind of glue for the genetic information – can be faulty. Where this is the case, a genetically normal egg or embryo, as it divides, can become increasingly abnormal and fail to implant or implant and miscarry. Age is a big factor but it can happen to younger women too. On that basis, we went ahead with donor eggs (after much thought and medical consultation, as mentioned above) and I had a very well-monitored, largely healthy pregnancy and a very healthy, gorgeous little boy. I do.not.know if this is what’s affecting you – your embryos sound like they are better quality that mine ever were – I just wanted to let you know that there might be another possibility out there beyond the clotting/immune/genetic stuff. Whatever you decide, I wish you the very best.

  • Anonymous

    Coming from a letigious country, it is perhaps not surprising that I am unimpressed with Dr. George’s boo boo face, and wonder why, if Clexane is a known risk factor for thrombosis, Clinic Fabulous just doesn’t wean all patients gently off the drug, rather than letting the boomerang effect smack anyone it so chooses right where it counts. Even stopping baby aspirin has been known to cause this effect in some people. And, since you were probably also suffering from OHSS earlier, and had experienced a fair amount of swelling before the PE/DVT developed, this should have been a warning sign, in my humble and not-at-all-informed medical option. But this rant is not helpful, so sorry, but I can’t help being indignant on your behalf. And it also pisses me off that negative reactions that can be attributed to drugs often aren’t, making these “rare” reactions seem more rare than I feel they probably are. I hope they change protocols at the clinic because of your experience.

    I am so very sorry for your loss, May, and I wish you health and peace. Really.

  • Lisette

    Wow, I’ve just spent some time reading your history and this horrific experience you’ve been through. I can relate, the DVTs, the immune issues, sounds like we might even be seeing some of the same consultants. It’s a mindfuck this stuff, the clotting, the immunology. It’s overwhelming. Who do we trust? What is the plan? All I can say is I’m thinking about you and sending my support. Please take care of you, because sometimes I think we lose ourselves in the process. Your health is paramount. Love xx

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