Monthly Archives: September 2013

Beetroot hummus

Late at night, in bed, in the dark, I am having trouble sleeping. I actually went into town earlier, and came home so tired I can’t catch my breath, and my head is aching. I had a ‘flu jab on Friday, which probably is not helping.

H lies beside me, stroking my shoulder. ‘Did you drink enough water today?’ He asks.

‘Probably not.’

‘You need to look after yourself.’

‘I know,’ I mutter. And I start weeping. Silently at first, but soon I am shuddering with sobs and the tears are running into my ears.

‘Sweetheart,’ says H, ‘Oh, sweetheart…’

‘I used to enjoy looking after myself, though,’ I choke out, as H hands me tissues, ‘When it wasn’t just me I was looking after. All that eating well and drinking plenty… I even used to go to the organic place and get the beetroot hummus and falafels because it was the healthiest gluten-free option left, and I’d sit in the park and I’d enjoy it, because it was healthy and I was looking after 6AA.’ I start crying again. ‘I fucking hate beetroot.’

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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.


Thaw

Item – I have reached the unfortunate phase in which the nice, comfortable numbing ice of shock and startlement starts to melt, and I keep accidentally putting my boot through a rotten patch and having to limp about for hours with the Sodden Sock of Uncomfortable Thoughts. So, yeah, welcome to the weepy, irrationally angry, panicking part of the show.

Item – Physical recovery notes: I can walk for fifteen minutes before my leg starts aching. I can even run little errands. However, I still can’t walk very fast, and if I over-do it I feel like Woman Who Has Been Fell-Walking For Seven Hours, rather than Woman Who Went Round The Supermarket Looking For Lemons, Cream, And Gluten-Free Pasta. I had a slight cold, and then another slight cold (or one long cold that paused for a wee rest in the middle), and had quite a few episodes of breathlessness, lightheadedness and once, a near-faint that cheered H up no end. My left leg is not particularly swollen any more, but is covered in visible veins now, so my legs don’t match anymore. Which I don’t really care for. I am also very prone to bad, day-long headaches, three or four days a week. My recovery has slowed right down to a very sluggish crawl. I don’t know if I’m well enough to go back to work next week. H definitely thinks I’m not, which makes me feel weepy and panicky in itself.

Item – Then H was in the wars. He had a nasty abscess, which needed lancing and draining at the A&E (well, it might not have, but the GP panicked), so we had another long dull afternoon waiting about at that Goddamn hospital, and then the young doctor who assessed H insisted in putting a drip cannula into the back of his hand in case he needed surgery on the horrible oozy mess. H hates needles. He really hates needles. He had to leave the room every time I was approached by a nurse bearing tourniquets while I was in hospital. It was in a mahoosive display of loyal solidarity that he used to sit with me for at least a few goes during the IVF shoot ’em up. And there he was, needled, and covered in adhesive tape. When the more senior doctor finally did fight his way free of the operating theatre and come lance this stupid abscess, he did it all with lidocaine jabs. And then took the useless cannula out, ripping nearly all H’s hand-hair out in the process, which I am told hurt more than the needle. Anyway! H has to see a nurse every morning to get the dressing and packing changed (ugh) but it’s healing very cleanly and he has finished his antibiotics now and I swear, he may NOT have any more ailments this year, because between us it is the outer freezing darkness of enough already on matters medical.

Item – So far I am happy with the Cerazette. No bleeding, and, best of all, no endless fucking cramps and bowel spasms. So far fingers crossed touch wood kiss iron spit on the coals etc.

Item – My bloody mad family struck again, in the form of a surprise relation who finally, well into adulthood, tracked us down and said ‘Hi! I’m so-and-so’s child! Yes, while he was married to thingy, the bigamous old goat. How many other kids did you say he had?’ In the event, Surprise Relation was absolutely lovely, but I skipped several family meet-ups despite emotional blackmail because heyo! Not well! Really not well! So there was that.

Item – Yes yes yes I am working on the WTF appointment blog post. I really am. I said I would. It’s very difficult to write, is all. 6AA, the perfect embryo we did so much to keep safe inside me, died anyway. I nearly died. Something is very wrong and everyone talks phlegmatically of trying again with the frozen embryo as soon as my haematologist clears me for pregnancy. I think everyone is stark staring mad with unwarranted optimism.


Frozen over

Hello, Gentle Readers. How are you all? I’m a lot better. Really, much much better. My leg only aches now when I stand or walk for more than five or ten minutes. I even baked a cake today, standing to do all the whisking and mixing, without needing a sit-down in the middle (though I did need a sit-down once the stupid thing was in the oven (it – the cake – looks very untidy indeed. Mary Berry would be ashamed of me)). I am easily tired, but on the plus side, I sleep like I’ve been drugged, for eight to ten hours straight every night. As a life-long insomniac, this is a treat. Ish. When I’m not having complicated and unpleasant anxiety dreams.

As for my emotional state, I am frankly a bit weird at the moment. I am pretty calm, sanguine, cheerful even, if somewhat subdued and untalkative (what do you mean you’d noticed?). I – not consciously – won’t let myself think about miscarriages or trying again or almighty fucking huge pulmonary embolisms. I can feel my thoughts skittering across the surface, like ducks on a frozen pond. I talk about these things, as and when, in a matter-of-fact way with an upper lip stiffer than boiled leather. As evidenced above by the fucking annoying anxiety dreams, there is a whole deep quagmire of grief and fright and rage under there somewhere. No doubt I will thaw and Go Mental at some point. My GP thinks so, and is rather concerned I will try to go back to work too soon and Officially Lose My Shit. I don’t know. Do you know?

Anyway, we spent a few days with my mother, and we visited Hairy Farmers, and then there was the consultation with the Haematologist, and I need to tell you all about the WTF appointment with Dr George at Riverside. I will be back. Meanwhile, I leave you with bullet points:

  • My heart, according to the echocardiogram I had in the last post, is just fine. So yay!
  • I am now on Cerazette, with the approval of Dr George, Doc Tashless the GP, and the Haematologist. Because on blood thinners and not allowed Diclofenac, Menstruating Mays Are Very Very Very Unwelcome.
  • We are benched until Christmas at the earliest. We must make sure I won’t fucking die next time I get pregnant. To which end I gave the hospital another four vials of blood to test for… things. Like Lupus. And shit like that.
  • Holy shitwhistles, the bruising from the Fragmin. My belly looks, as I mentioned on Twitter, like a bowl of stewed prunes and not much custard.
  • My family are bloody mad (and there’s a post in that too!).

My art… keeps me sane.

Hiya, Gentle Readers. How have you been? I have been tired. Unbelievably tired. You know when you have ‘flu, and the first day after the fever breaks, you feel so much better, so you get out of bed and have a shower, and by the time you’re rinsing your hair you’re weeping with exhaustion? Like that.

Truthfully, I have been better than that for the past couple of days, but was busy feeling numb and reading fantasy novels.

State-of-May: Apart from The Tired? My leg has been getting noticeably better day by day. I can stand and walk for longer, and the pain is less hellacious and more of a dull ache. My pulse is still too fast for a resting pulse, and coffee makes it so much worse, but I no longer get completely breathless just climbing a flight of stairs. Cute Ute the Despoiler has finally stopped bleeding scarlet and is just spotting in a grouchy sort of way. She is also doing her trademark aching thing she always does for two Goddamn weeks after a period. I hate her and want a hysterectomy, but that’s our basic standard relationship. My belly is covered with vivid 50 pence-sized bruises from the Fragmin jabs, and I may have to violate the innocent virgin flesh of my outer thighs soon, as it is recommended one does not inject too close to an existing bruise. I have finally had a Dead Baby dream, of unprecedented David Lynch-style unpleasantness, so thanks for that, Subconscious.

Scanners!

I meant to tell you about the CT scan I had on the 28th of August, back when we were hanging around the emergency departments of the local hospital, waiting to find out why in heck I couldn’t breathe and talk at the same time. So! At about 9pm the doctor finished fucking with my veins and sent H and I down the corridor to the CT department to sit in the corridor there for a bit. It being summer, I had bare legs and was wearing sandals, so by now my feet were freezing cold. As well as being two different sizes. A technician appeared after a few minutes and sent me off to change into a hospital gown in a cubicle in a corridor full of men of all ages talking earnestly and loudlyabout testicular cancer. I shuffled painfully back past them clutching the back of my gown shut, colder than ever.

The technician then led me into a positively Arctic room, containing a narrow bed on a set of rails poked through a gigantic metal and white plastic doughnut of a thing. He briskly went through the ‘who are you, what is your date of birth?’ rigmarole and ended with ‘is there any chance you might be pregnant?’

‘No, none at all,’ I said.
‘Are you sure? Because this machine uses X-rays and we inject you with radioactive contrast dye and we need you to sign this disclaimer.’
‘I’m absolutely sure.’
‘How can you be so sure?’ he asked, briskly.
‘Because I had a miscarriage last week.’

The technician went a little pale, and became, suddenly, much less brisk and more tender.

I lay down on the bed, and the technician injected something, saline I suppose, into my hard-won cannula to check it was working. It stung, and I winced, and he said something about that being good, as it showed it was working. Then he got me to put my arms over my head, so they poked out the other end of the doughnut. I could not see what he was doing, but there was Fiddling With Cannula Again. He came back round to pat my elbow and tell me that the bed would move in and out of the machine a few times. There would be two injections of dye. I might feel odd hot sensations in my face and abdomen, and taste a metallic taste. Oh, and I might feel as if I’d wet myself. It was only a sensation, and I wasn’t to worry. And then he went off to the little booth. What the fuck?

The great metal and plastic torus over my head began to whirr and click, and you could see a conglomeration of machine parts through the transparent ring start spinning. A very loud voice told me the first injection was about to start. What they didn’t warn me of was that it would HURT LIKE FUCK. I managed to lie still and hold my breath when told to but tears sprang to my eyes. I mean seriously, technician dude, with all the other warnings, a ‘this will hurt like fuck’ would’ve been appreciated. And yes, I did indeed feel a sudden hot rush exactly as if someone had tipped a cup of hot tea onto my crotch. And yea verily, it was weird. And metal in my mouth, and warm flushes in my belly. And the machine roared and whirred and I was motored deeper into it and was beginning to expect the Universe to suddenly blur and tilt and vanish as I shot through a wormhole or something. Just as the pain in my hand was beginning to fade, they warned me the second injection was about to happen, and again the savage burn, and the hot tea in the groin and the swimming sensation.

I have no idea how long it all lasted, but I doubt it was longer than ten minutes. The technician came out to gently liberate me from the dye pump – I saw the size of the syringes and crikey they were big. No wonder that hurt. My hand veins are small and irritable at the best of times, and did I mention I was cold? – and help me sit up. I was despite warnings still slightly surprised to find that I had not in fact pissed myself. He told me to go back to the Clinical Decisions Unit and they’d send the scans along when they’d processed them. These were the scans that showed a large pulmonary embolism, straddling the pulmonary artery just where it splits into two branches, one for each lung.

And when we got back to the CDU my cannula leaked bloodily all over the floor. Hurrah!

To return to yesterday. Yesterday I had been booked in to have an echocardiogram, to check whether last week’s shenanigans had done any damage to my heart. The chances of permanent damage are not high, before you all panic, but, you know, best to check.

H and I ambitiously took the bus, as my leg was so much better. From the bus-stop to the correct part of the enormous hospital is about a 500 yard walk, and I managed it with only one stop to sit for a few minutes. Admittedly, my leg spasmed at the last yard and I needed another urgent sit-down, but I managed it, and I did not get too breathless to talk or so tachycardic I noticed, so yay!

Of course, when we got there, they’d cancelled my appointment. Because when it was made I was an inpatient and the twat who did the discharging on the computer was a twat. I can say this with impunity because the extremely sweet receptionist in cardiology leapt to his feet and rushed into the back offices to sort it out, and came back overflowing with apologies because obviously the appointment should not have been cancelled and he’d see at once what he could do and off he rushed again and five minutes later my appointment had been reinstated and the poor chap,was apologising to me all over again because there’d be a wait and did we want to go get a tea or coffee? I thanked him and said I could see they were busy (waiting room quite full) and we didn’t mind the wait at all, at which point he looked so relieved he nearly popped and pressing his palms together, bowed to me right there in the waiting room. From which I can only assume people had been being dicks to him all morning. And then H went and got me a (decaff, obvs.) cappuccino and I settled down happily with my book for an hour.

The echocardiogram itself was no biggy. I stripped to the waist (tits ahoy!) and lay down on a couch next to that familiar creature, an ultrasound machine. The sonographer lady, poker-faced but perfectly pleasant, attached electrodes to my collarbones and right side, and then had me roll onto my left side ‘for a better view of the heart’. She then jellied up a probe and pressed it to my breast-bone, leaning comfortably over my waist. She also scanned my heart from just under my left breast, which was less comfortable, as she kept digging the probe into breast-flesh to get a better view, and this went on for some time. I got to hear my own heart beating from various angles. From some, it sounded weirdly sloshy and gloingy, like someone playing in a tin bath. It also sounded a little fast to me. I’d never really considered what my resting pulse actually is before. I know I am not very fit, so it won’t be particularly slow, but constantly in the 90s? Reaching the 100s? Me no like. Poker-face said nothing, beyond asking me to roll onto my back again so she could probe around under my ribs for a while and then explore matters via my supra-sternal notch. I did get to see my heart on the monitor, and I can assure you it is a busy little organ and has four chambers and it goes woosha woosha and/or thuddity thuddity and/or slosh-gloing slosh-gloing depending on the angle, but more I cannot tell you. Poker-face handed me lots of paper towels to de-slime my torso with, informed me my consultant would be in touch about results, and once I’d dressed, ushered me firmly out of her domain.

I don’t see the consultant for another week. Ho hum.

I can see why technicians don’t want to discuss tests with patients. The technician doesn’t have the full picture and can’t know if they’re seeing anything clinically significant or not, and it’s rotten to make them responsible for dealing with bad news situations, and anyway, the patient may well get hold of the wrong end of the stick and without all the other information the consultant has it may well be the wrong stick altogether. But it’s fucking frustrating for us. ‘Not knowing’ is a thing I have enormo-huge issues with at the best of times. The whole ‘it’s probably fine’ thing does nothing for me. It never did, and given the quite dramatically inventive ways I manage to fall off the Medical Norm charts, it never bloody will, because in my case ‘probably’ so often means ‘muahahahaha’.

And H! H has actually gone to work today. He has been getting by on a mixture of compassionate leave and working-from-home, and luckily there haven’t been any big or urgent projects to deal with, so he has actually been at my side since the miscarriage proper. We have both been very subdued and not very talkative, H mostly sublimating his feelings in making me tea and buying me all my favourite chocolate bars. It occurs to me that at this rate I am going to turn into crated veal, and the Chocolate Needs To Stop, heart-rending sentence that that is. Poor H. He looks so sad and tired, all the time.