At length, or, Clot me Amadeus.

Gentle Readers, I have no idea where to begin. I am at an utter loss. Because, my dears, what in the name of fuck just happened?

H, poor bewildered stressed-out lamb, gave you all an account of How We Spent Tuesday in the last post. So we left matters with me tucked into a hospital bed on the Clinical Decisions Unit, some time after midnight, and H shuffling off home to try and get some sleep.

I was woken at three in the morning by a doctor on call from Haematology. We discussed the recent miscarriage, the Clexane, the coming off Clexane, and the fact this was my tenth miscarriage, and she patted my hand, and then, apologetically, told me she needed to get an arterial blood-sample, which would mean sticking this rather large needle into that handy artery on my inner wrist. OW THE FUCK. After which, going back to sleep was kinda not happening or a while.

Allow me to digress, back-track, bitch, and discuss needles for a bit. My veins are quite small and deeply tucked into my flesh, so barely show at skin-level. That said, I have one splendidly cooperative vein in the crook of my left elbow that even an amateur can get first stab, and a fairly cooperative one in my right elbow crook. So, the first blood test, taken in A&E at 14:45, was taken from the Good Vein, and left a small bruise, oops. When I was admitted to the CDU with a definite DVT and suspected Pulmonary Embolism, they needed to take more blood, and set up a cannula for the CT scan. Because Good Vein was bruised, they tried Second Best Vein, which promptly collapsed flat and refused to release a drop. The darling sweet nurse apologised and stuck Good Vein, who promptly screamed ‘fuck you!’ and not only collapsed shut after half a vial, but then blew and left me with a bruise of shudder-inducing luridness and a blood-blister. The poor nurse patted and rubbed both my hands for minutes on end, but they insisted I had no veins at all and the blood only circulated by osmosis. So they paged for The Vein Whisperer. I kid you not, they referred to this dude as The Vein Whisperer.

He arrived very quickly, a soft-spoken shy-seeming young man, who mumbled politely at my hands and forearms for a minute, then poked a cannula into a seemingly absolutely random part of my right hand, and hit a decent vein at once, and got the two vials of blood for tests, and it didn’t really hurt. And then he sidled back into the bowels of the hospital and to my great sorrow I never saw him again.

After a vey long while, the CT scanner stopped having massive life-or-death emergencies to deal with and had time for me. The doctor now on duty needed more blood (this is standard with a DVT) and was also concerned that the little vein in my hand wouldn’t ‘take’ the dye shots for the CT scan. So she tried to find another vein. Oh, but that was unpleasant. She managed, eventually, and what a tale of ow is in that ‘eventually’, to get a needle into a vein in my right inner wrist, and get just enough out for the tests before it collapsed, and in the attempt to reposition the needle she tore the vein, and the bruise from that looks like a peacock feather. So she flushed the existing cannula and said, basically, sod it, it’ll have to do. Oh, thanks.

I’ll tell you about CT scans another time, but believe me, they are weird.

So! At 4am, all the completely demented little old ladies on the ward with me woke up confused, upset, and utterly disorientated, and started yelling, weeping, cursing (I thought I had a potty-mouth) and in one case wandering into other people’s cubicles and haranguing them. I merely got ordered to get up and take her to the shops, but she was happily telling the lady with back trauma to go hang her fucking useless self before one of the nurses corralled her. Oy. Vey. The nurses, by the way, were saints. And no more sleep for May.

And after breakfast, another nurse tried, and to everyone’s delight, succeeded in getting blood out of Second Best Vein.

H turned up at ten am, with bags under his eyes almost down to his beard, with some toiletries for me stashed in them, so I was able to have a sort of cat-bath, apply deodorant and brush my teeth and therefore feel a tad more civilised. Demented Wandering Lady promptly mistook him for her own son and alternately begged and emotionally blackmailed him to take her home, which was Awkward as Fuck, and then pulled the ‘you have fun with your bride, I’ll just wait here alone and forgotten in the dark’ card before being led away and fed tea by the nurses. Her actual son turned up later and did in fact look somewhat like H, but we decided not to harass the poor chap with the incident.

A doctor surrounded by students marched in, gave them my potted medical history (always a freaky ‘who is that poor unfortunate mortal… Oh’ moment), and told me I’d been referred to Haematology and their specialist consultant nurse would be coming to evaluate me. She also revealed, to my bewilderment and H’s total fucking horror, that the clot in my lung was not, as we thought, small, but actually really rather large, and cuntily (she did not say ‘cuntily’) positioned in the ‘saddle’ where the pulmonary artery splits into two branches, one for each lung. Which explains the constant tachycardia and breathlessness. But I’d already been given a huge shot of Fragmin the previous afternoon, and would be kept on that, so not to worry! Not unless I developed chest pain or collapsed! In which case, maybe worry! And off she went.

And then I had lunch. Which contrary to popular myth, was not inedible, though I don’t think you’re supposed to boil carrots until they dissolve.

The Haematology Nurse was lovely, and during the course of our conversation leaned forward, took my hand, and whispered that she too had no children and was trying hard. We get everywhere, we Infertiles. I hope she succeeds, because we need more nice kind clever people about the place. Anyway, she checked my pulse, BP and oxygenation rates, and then took me for a little walk (Holy crap, having a DVT can hurt. *limp limp hop ow limp*) along a few corridors and up and down a flight of stairs, and then checked again and found that though I’d stopped with that breathless nonsense from the day before (yay!) and my oxygenation was still good at 97%, my pulse was racing at 120 beats a minute, which was a bit of an overreaction. So I got another electrocardiogram. And another blood test. Buggeration. (Useful vein discovered in back of left hand, though a syringe was needed to get anything much out, which hurts *whine*).

Haematology Nurse also brought me a handful of leaflets on thrombophilia and on pregnancy with thrombophilia. The fact we were trying so hard to conceive rather concerned everyone, and so they decided not to put me on Warfarin, which is the standard treatment, but very toxic to embryos, unless Fragmin alone wasn’t helping enough. I did book myself a six-month course of Fragmin injections, however, and a set of compression stockings which I will have to wear for a large part of every day for two sodding years.

(Fragmin, like Clexane, is a low molecular weight heparin, but I am now on about four times the dose of the ‘prophylactic’ Clexane, and why yes, Virginia, it does sting and bruise about four times as much).

I was then moved to another ward, as I’d been in the CDU for the regulation 24 hours and was going to ‘breach’ any minute. I got transferred in a wheelchair, pulled backwards through the corridors, which gives a lass an unrivalled chance to stare back at the people walking along behind you in a brazen ‘well, you looked at me first’ sort of way. At the new ward, I got swabbed for MRSA, and had the usual BP/pulse/oxygenation tests, and my pulse being way high, I spent half an hour on a continuous monitor, which no one except H bothered to check. My pulse rate was rising and falling like the waves on the sea, with no particular logic, and my oxygenation rates would occasionally drop a little, just to keep H good and nervous, but I didn’t trip the alarms, so after a while I got unhitched so I could go to the loo and change into a fresh and more dignified gown, and they didn’t bother to rehitch me.

And drank a million cups of tea, because the one thing the NHS believes in fervidly is the importance of tea.

My Friend Who Knows Who She Is (hi Sol!), who actually lives near me and had offered to come over and keep me company, managed by a splendid bit of detective work to track me down and called the hospital and offered to visit me, which was jolly splendid and I said yes please. She turned up just after the Haematology Nurse turned up to drag me out for another little wander (I noticed my gown was not quite arranged at the back about five minutes into this walk. Hello everyone! I wear black knickers!). I don’t know if my heart and lungs were cheering up anyway or whether it was the pleasure of seeing my friend (who bought me BOOKS, proper good old detective and SF&F to lose oneself mindlessly in) but my pulse and oxygenation levels were more satisfactory. Didn’t stop Haematology Nurse doing another electrocardiogram, and frankly I am so utterly devoid of dignity and modesty at this point that I was happily yanking up my gown In front of everyone in a ‘hi! We’ve all got tits, right?’ sort of way without batting an eyelid. Sorry, Sol.

However, Haematology Nurse was pleased enough with the results to declare I could go home now. ‘Now’ means ‘When we can hunt down the pharmacist and sort out your bazillion Fragmin jabs and an epicly large sharps bin to take home with you’. So we had a nice chat with my friend until the end of visiting hours, and the dinner lady forced me to eat a yogurt (couldn’t face the Irish Stew and anyway I was going home soon). H, who had been in regular communication with my Mum announced she was driving up to see me so she could give us a lift home. The pharmacist turned up and I was given a carrier bag full of syringes and a sharps bucket. I changed back into actual clothes, and then they wanted the bed back, so we were sent to the ‘discharge lounge’ (bad name. Very bad name. Reconsider that name, for the love of God) to wait.

The discharge lounge was a cupboard containing six massively uncomfortable chairs, nowhere for me to put my leg up, and a gang of teenagers eating their way through the entire stock of the snack section of quite a sizeable supermarket. And H called my Mum again and discovered, as I had lovingly and from long experience predicted, that she was going to be at least another hour, hour-and-a-half, because she always bloody is, and I demanded a taxi in lordly tones. Like hell was I going to sit there aching bitterly surrounded by Doritos and clouds of Charlie Red.

Home! Home at last! And when Mum turned up, we had Chinese takeaway and a quiet chat, mostly me trying to explain that DVT and Pulmonary Embolism was not the same as the stroke my beloved grandmama died of, so could Mum stop fretting about that (I didn’t mention the possibility of heart failure bit. I thought it mightn’t help, as such). Oh, and discussing family history of various illnesses (upshot, I am a freaking freak, which we knew).

And then I went to bed and slept for ten hours straight.

And now I am going to go and do that again, with any luck. Golly, this has been a long and rambling and badly written post. I do apologise. I don’t have the energy to give it a good old edit and a bit more snap and narrative arc.

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47 responses to “At length, or, Clot me Amadeus.

  • Hat

    Glad you are home. Keep getting well you. hope you sleep well and that your mom remains calm while you convelesce.

    • May

      Thank you. Keeping my Mum calm I think I may have to delegate, because I am officially Too Tired. Luckily at the moment she is sublimating her angst into food parcel arrangements. I can live with that.

  • persnickety

    Oh my! An epic adventure. The CT lung scans are weird. Hopefully they spared the bit where they ask (multiple times) whether or not there is any chance you are pregnant before they inject you with radioactive stuff in the blood.

    And the Vein whisperer. When you find them, those ones are awesome. A surprise to discover that blood can be taken without pain (and bruising). I now have a little spiel for the takes of blood (i have a permanent clot in my left elbow- which becomes more prominent when they try to increase blood flow to take blood- it also wobbles when pushed) to let them know which veins are worth it. I do think that the NHS nurses are not always properly trained in this- all of my traumatic blood draws were NHS ones.

    Glad you are home, and healthy(er).

    • May

      Alas, not spared the ‘are you sure you’re not pregnant?’ bit. I had to sign a form and everything. ‘How can you be sure?’ So I said, weepily, ‘I miscarried last week!’ And the poor technician went a bit pale.

      I did fantasise about kidnapping the Vein Whisperer and taking him to all future haematology appointments. My arms look like they’ve been run over.

  • Jo

    Funny you should say that, because as I was reading I was quite impressed by your ability to maintain witty banter in the throes of such godawful miserable fuckery. This is further proof of the un-justness of the universe, dear May. You have had ten people’s worth of shit dumped upon you in the span of just a few years – how you maintain your sanity is beyond me. But I do so love hearing from you, and reading your blog. I just wish it was happier news these days. (Ha! I wish! Like you fucking don’t!) Anyway, I’m clearly dropping f-bombs all around the place on your behalf. And hoping, wishing, sending vibes for a fast and speedy recovery.

    • May

      You are very lovely and flattering. Thank you.

      I’m not entirely sure I AM sane, mind you. I definitely feel somewhat unhinged by the events of this summer, but am too surprised to process it all right now. But that’s what blogging is for!

  • Nicky

    Oh, I am so sorry about the whole ordeal. All of it 😦 We really do need more nice, kind, clever people around.

    If it makes you feel better, I found your narrative to be spellbinding, and some parts so funny that my husband and mother-in-law asked me what I was laughing at.

    I hope your clots dissolve soon, without causing any more trouble. Glad to hear you’re ok(ish).

    • May

      Awkward moment, that. ‘What are you laughing at?’ ‘Oh, this woman who nearly died…’ I am so sorry. Black humour is a traditional British institution for Dealing With Shit, and one I clearly bought into with enthusiasm.

      Thank you both for the good wishes and the compliment.

  • Jenny F. Scientist, PhD

    While I sympathize with your desire to reassure your mother, still the OH MY FUCKING GOD LET’S NOT DIE NOW quotient is still pretty high here! ACK ACK ACK ACK ACK. And lots of anticoag. And, I predict, many conversations with pharmacists about anticoag.

    Also, “In which case, maybe worry!”. Indeed.

    Also also may nobody ever again argue about whether you have clotting problems/thrombophilia/what the fuck ACK ever. QED, etc.; may it not be demonstrated again.

    • May

      I have absolutely earned my ‘I *Big Puffy Heart* Clotting!’ teeshirt.

      Yeah, much discussing of six months on Fragmin versus six months on Warfarin, I predict, because babies. And poor bloody H twitching every time I cough or sigh. Ugh.

      It is beginning to dawn on me just how ill I actually am. HOLY FUCKWEASELS. That is all.

  • Amy P

    Something that just occurred to me (much better than the oh-wouldn’t-THAT-just-be-the-icing-on-the-cake moment I had when we were chatting earlier)–will being shot full of anticoagulants help any with the monthly blood-shedding? Or will Cute Ute the Despoiler not care about how thin that blood is?

    • May

      I am worried about this. Haematology Nurse told me to Stay Away from NSAIDs, so no Diclofenac. Oh, crikey, I am not happy about this at all.

      • Betty M

        Staying well away from NSAIDs was the first bit of advice I had from my lupus prof when I told him about ttc.

      • Amy P

        Well, one of the few medical-type things I know is that a side effect of NSAIDS is blood thinning, so I can see how staying away from them would be desirable…

        Here’s to hoping that anti-coags have an anti-inflammatory side effect…

  • Betty M

    Golly that really was a shitty few days. Enough of you being in your own personal extended edition of House! And can I put in an order for a new set of veins for you too? In my experience you should never let a consultant attempt to draw blood, junior doctors only in extremis, nurses sometimes bearable but proper phlebotomists are a marvel – why they hide them all in outpatient clinics I don’t know.

    • May

      Ha! I thought that too – this is an episode of House. Any bets it turns out to be Lupus?

      And yes, the doctor was sweet, but a total vein brutaliser. Why she didn’t just page the Vein Whisperer again I don’t know. Doctors after all only do veins occasionally and phlebotomists do them a trillion times a week, so… 10000 hours theory proved.

  • Robyn

    Glad you’re home, Shocked and appalled at the hideous ordeal you’ve endured, with a worse one to come…compression stockings. If you think balancing on one leg in the shower is hard, wait for the antics involved in getting these malevolent little f*****rs on and off. Makes yoga look like stretching for sissies.
    Have sent a small something to assist in recovery so keep an eye out, I’m hoping it won’t join those mystery socks somewhere adrift at sea, Recline on, oh invalided one and we’ll keep an eye out for any further Pirates of the Universe picking on you.

    • May

      H has only just this minute come in from some errands waving a parcel from Australia! Hurrah! And, ooh, look, Seriously Fancy and Amazing chocolate, and a very beautiful and touching card. I hug you. I hug you enormously. I hug you at length. I may cry.

  • Lilian

    Aggh!!! All that blood taking sounds horrendous, apart from anything else. I too have small, wriggly, borked and uncooperative veins. It’s horrible when people who aren’t actual phlebotomists try to take blood out, doctors being the worst culprits in my experience. CT lung scans are v weird and disconcerting. But glad you’re home and recovering now. L x

    • May

      Doctors are a tad ‘I know what I’m doing, I’m a doctor!’ about veins. Harrumph. I am a brave little soldier, or at least I try to be, and she was a lovely lovely woman who in all other respects was doing a good job taking care of me, but I still want to kick her in the shin over the state of my wrist.

      CT lung scans are a bit bloody SteamPunk also weird.

      • Amy P

        A description of those scans is going to be needed at some point. Both my girls have had the endure chest x-rays, so I know those are torture devices for toddlers (innocent heart murmurs that resolved themselves, in both cases) but the only CT scan I’ve had any experience with was a head one right after a seizure in which nothing was found.

  • sheila

    Jeez May, words fail me….. I’m so sorry for what you are going through. Here’s hoping that by some miracle all that extra fragmin gets and keeps you naturally pregnant as some recompense for all this trauma. It also reminds me of the professor – did she say something like your clotting issue wasn’t that significant? Huh….. Funny that prof.

  • Sara

    My awe at your ability to turn such an awful situation into something so amusing almost overshadows my guilt at how much I laughed through this post.

    I had suspected DVT a few years back, and even though it turned out to be only superficial thrombophlebitis, man it hurt. Hope you’re feeling better soon.

    • May

      Thank you! I do my best… If I didn’t try to make fun, I’d run screaming mad down the street tearing all my clothes off.

      Nobody seems to know about this. We should tell people. A blocked vein HURTS LIKE A BITCH IT REALLY DOES.

  • Womb For Improvement

    Holy shit. When is the universe going to give you a fucking break? I can’t believe what you are going through, I know life isn’t supposed to be fair but my god you’ve had enough now. Take care.

    • May

      I think I must have done something horrible in a past life. I wonder what. Puppy-skinning a la Cruella De Ville? Pimp? Member of the Spanish Inquisition? Because nobody expects the Spanish Inquisition! No, wait, I’ll come in again…

  • Peg

    We’ve been dealing with a DVT and multiple PE’s for 10 months now. My husband was completely asymptomatic…not pregnant, sedentary, overweight, travels alots, etc…He’s been tested for all the genetic stuff too and still no reason why. His leg didn’t bother him at all and he had no swelling, but I can imagine how painful it must be. After 2 weeks of the shots twice a day, he’s on coumadin (warfarin) now for the long haul because we have not explanation. He goes in either every two weeks or once a month depending on his numbers to check his INR. It has taken a bit for his lungs to recover since the PE’s caused some lung damage but he’s pretty much back to his normal self minus all the diet changes (no leafy greens) and the coumadin makes him a bit tired.

    I am so sorry all this is happening. Your ability to write with clarity and humor is amazing. I’m totally in your corner and rooting for you from across the pond. Hang in there and try to chill out with lots of good books and indulgent tv.

    • May

      How terrifying his leg didn’t bother him. Golly. I mean, my leg is pissing me off, but at least it was a giant wailing klaxon warning me Something Was Really Wrong. Best wishes to your husband AND to you.

  • Melissa

    Oh dear May! I’m very happy to hear you are home but so very angry that you’re having to deal with all of this! Damnitall seriously?! I really hope this is nearly behind you now, truly!

  • heartsick

    I also had a sudden pulmonary embolus after a plane flight. When they got me to the hospital my INR was basically zero and I was stuck there, in a strange city, alone, for five days. I had the Pulmonary Embolus CT and I was a little out of it at the time but I bet I know what you’re talking about there. 😉 I was on warfarin for about eight months afterwards. Finding the right dose to keep my INR in the sweet spot took ages. Oh, the joy of blood thinners! Suddenly I bruised like a maniac and bled like a stuck pig. The really frustrating part was that the MDs were telling me to diet, but they put me on the warfarin which meant No Leafy Greens. Well, what the hell AM I supposed to eat then? Air? Anyway, will think clot-busty thoughts for you…

    • May

      Hail fellow well met! The strange city part is terrifying, oh poor you. Yeah. CT scan *wink wink*. Did they warn you or let you Feel The Fear? Also, err, eat carrots? I guess? And, errr, celeriac? Cucumber? Gah.

  • Dr Spouse

    Oh my. Please do rest. And eat takeaway and avoid students. Can I get you anything? Chocolate? Yarn?

  • a

    Skimming the comments, and saw your note about your past life – based on the past few years, you must have been Attila the Hun, Ivan the Terrible, Hitler, and 3 or 4 serial killers in a past life. Even for all that, I would think you’d be done paying by now. Much luck with the clots and the compression hose and the injections and the ban on NSAIDS and everything else…

  • Melissia

    May,
    I have that clotting disorder and have had some PEs in the past and those great VQ scans of which you speak. Here they tell you that when they inject the dye you will feel a flushing sensation. What they do not tell you is that it can start anywhere but will end up in your flushing into your heart which causes an intense heat sensation like it is going to explode.
    It is very scary, and the first time I felt it I wanted to crawl out of the machine, but I had a huge clot that ran from my heart to my rt elbow down the rt subclavian vein, so I was unable to move my arm. Otherwise I would have moved!

  • wombattwo

    Oh May, my lovely. How utterly and seriously unfair. There are no words.
    If there is ANYTHING I can do…?

  • waterbelle44

    CHRIST. This sucks so much. Thinking of you.

  • g

    Oh, May.

    I am here, I read. I can’t believe the amount of shite hitting your proverbial fan,

    x

    g

  • Brave IVF Mama

    Just catching up here. So sorry to hear about the nasty embolism and needles and other suckiness throwing itself at you. *hugs*

  • conceptionallychallenged

    Gosh, May, I don’t even know what to say. So sorry you had to go through this crap, in addition to all the other crap. Hope the universe will now be kind to you to make up for all of this.

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