Being high risk or how I learned to stop worrying and love the needle

This is a post I wrote when we first started the blog but which I didn’t have the guts to post till now…

I always knew that pregnancy wasn’t going to be straightforward for me. In my second year of university I was diagnosed with thrombophilia (which I like to translate as “love of clots”), a condition I inherited from my Dad. I had a series of pulmonary embolisms which occur when a blood clot breaks off from a thrombosis (usually a DVT), travels through your body and gets stuck in the blood vessels that support your lungs, meaning your lungs can’t supply oxygen to the part of your blood system which is now cut off. All things considered, this isn’t good.

But in my case, or really three cases, I was fine – the clot was quite small, I experienced pain but nothing debilitating and I could continue my day to day routine (plus or minus baggage that my body was like a sleeper cell that would randomly activate and try to kill me). And for ten years I’ve been fine – no treatment, just a bit more obsessive than others about wearing attractive flight stockings and not drinking alcohol on flights (although I will admit to a small bit of quaffage the one time I was in business class).

But I do know how serious a condition it is. The days spent sleeping in the hospital while my Dad was in intensive care having experienced a massive blood clot to his colon told me how serious. And I know how serious the treatment is. When six months later he had a stroke, it was intensified by the warfarin that was treating the clotting and that ultimately made the bleed much worse.

We lost him.

So when we started discussing trying to conceive, it was always a factor. I’d read statistics like “pulmonary embolism is the leading cause of maternal deaths in the UK, with a mortality rate of 1.56 per 100,000 pregnancies [CEMACH, 2007]” and, from March of Dimes: “thrombophilias may contribute to pregnancy complications including:
● Repeated miscarriage, usually occurring after the tenth week of pregnancy
● Stillbirth in the second or third trimesters
● Placental abruption, a condition in which the placenta peels away from the uterine wall, partially or completely, before delivery. This can cause heavy bleeding that is dangerous for mother and baby.” [Lockwood, C.J. and Bauer, K.A. Inherited Thrombophilias in Pregnancy. UpToDate, January 30, 2009]. And I was petrified by it all.

But we wanted children and sometimes you have to take the risk. So we took the plunge and four months later I was pregnant.

So when the big fat positive came in I thought I’d better go and see my GP – find out what I needed to do, how I got me a consultant and so on. It took two weeks to get an appointment, so by the time I got to the GP I was already seven weeks pregnant. I explained my condition and that the consultant who had looked after me at university had told me I’d need a consultant if pregnant and could that be arranged? The GP took it seriously and said he’d get in touch with the hospital and get me an appointment.

I didn’t expect to hear anything for weeks, so it was a bit of a surprise when the next day I got a text from my doctor (who knew they did texts?!) saying “you may receive an appointment at the hospital by Friday – please ensure you attend as it is very crucial that you do”. So that freaked me out.

Then the next day, I had a load of missed calls at the end of the day and when I listened to the voicemail it was a nurse from the hospital asking me if I could attend an appointment at the hospital the next morning! That freaked me out even more – when the NHS starts moving quickly, that’s not a reassuring sign…

So I hurriedly made up an excuse to my boss about why I suddenly had to go to a hospital appointment, dragged Fred out of work, and hotfooted it to the hospital. There, after the usual NHS waiting time, we were faced with three consultants all asking me tricky questions about my medical history (I don’t remember precisely when the episodes were in the year – it was university, I don’t remember a lot
from that period of my life!) and tut­tutting about the fact I hadn’t been put on warfarin for life when the incidents occurred. Then there was the rub… To manage my body’s love of clots, I needed blood thinners, and warfarin was out because it’s rat poison and fetuses don’t like rat poison, so that left heparin. I remembered heparin from the first time round – a lovely injection in your stomach where the pain hit afterwards as the drug spread through your subcutaneous fat. I hated heparin. And oh, what was that? I need to inject myself with it once a day? Stick a needle in myself? With something that I know will cause me pain? Brilliant – bring it on!

So here I am 25 weeks later, not quite an expert at injecting myself (the bruising across my stomach looks like I’ve gone a round with Mike Tyson) but doing it all by myself. I’ve got through the trials and tribulations – accidentally letting my towel touch the needle and having to throw it all away in case it was contaminated, our cleaning lady closing my sharps bin, doing it standing up when we’re staying away. And I went through a rough patch, a couple of days where the infliction of pain on myself became too much and I sat there just unable to do it, “one, two, three”… nothing – I could not persuade my hand to move any closer to my body. Just sitting there for fifteen minutes, “one, two, three”… nothing; “three, two, one”… nothing; “go, go, go!” nothing. Enter Nurse Fred, who luckily seemed more than happy to stick me with a needle!

But after that my control freakery got the better of me, and I’ve done it each and every day.

Yet things are looking up. The treatment should do the trick, bringing my risk level down to that of a normal woman for the rest of the pregnancy. That I should be ok. Then it’s just the end to worry about – when they will try to balance heparin’s desire to make me bleed with thrombophilia’s desire to make me clot and try and squeeze out a baby in the balance between the two (simples – babies always come out exactly when you expect them to)… But for now I am a normal woman, experiencing a normal pregnancy (I just stab myself with a needle every day)!

And just when I thought it was all going so well they change my regime… “Sometimes we’ll need to run tests within four hours of your dose to check you are reacting well to the medication”.

And that means mornings. I don’t do mornings.

Luckily for them, my bladder now does, so am now stabbing myself while half asleep – it’s not helping the bruises…

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