We Can Adjust The Sails

The side gate was left open so she wouldn’t need to touch anything. A chair had been strategically placed mid-lawn, which would be immediately quarantined afterwards. The washing machine and shower were ready for their upcoming decontamination duties. And the welcoming committee (Lottie 😉 ) had been locked inside, for fear of over-enthusiastic sniffing. Hair tied back, face mask and hardcore visor adorned… I was ready. No I wasn’t about to defuse a bomb, or greet a flea ridden dog… I was due a visit from my local nurse. My first face-to-face contact with the medical world in three and a half months!

I’ll let you into a little secret. I’ve been a bit naughty in lockdown. In an attempt to avoid catching the dreaded coronavirus, I’m one of the many thousands who have stayed away from the NHS when they really shouldn’t have. I’m one of those patients that the chief medical bods keep pleading with, to still continue their essential care. I’m one of the significant many that have avoided having a needed procedure. Yes. Because although the vast vast vast majority of my hospital appointments and checkups and tests have all been cancelled or performed remotely during the pandemic… I was still expected to have my blood INR level checked each month. Except I didn’t. For fourteen whole weeks…

Since being diagnosed with Pulmonary Hypertension, every evening I swallow a foul-tasting pill called Warfarin. Taken daily by Grannies and Grandpas all over the country, it thins the blood and breaks up clots, allowing the red juices to flow through the veins more easily. It’s great at preventing heart attacks, and wonderful at helping the big pump work more effectively if in failure (and it causes some impressive bruises 😛 )…. but it is pretty temperamental. Unstable. Finicky! It’s like a fussy child. If I eat certain foods or take new medicine or the day’s name ends in a y… then it goes haywire. Thinning my blood to a high level, until a lower dosage of warfarin, brings it back in line. Consequently, to keep an eye on it, and check how coagulated my red juices are (the INR level), I have to have regular blood tests. ‘Tourniquet on the arm, needle in the vein, sucking the blood into a vial’ tests. When it’s behaving and stable, I need only monitor every month. But during a hissy fit, I’m back at my GP surgery every week, altering my dose, until it’s all back to normal. Thankfully for the past few years, it’s been playing nice.

When the coronavirus started its rampage, my PH doctors cancelled all other blood tests, moved appointments to phone calls, and postponed every scan and treadmill and probe test in the diary. They wanted me well away from hospitals and health centres. But they couldn’t cancel the INR. Just. In. Case. They debated taking me off it for the duration of the pandemic, or changing me to a different anticoagulant. But with PVOD such an unknown, they feared rocking the boat at a time when I needed to keep well away from the NHS. So I was told to carry on as before. Keep up the monthly INR tests.

But I didn’t. I daren’t. I was scared of that once safe haven. My local doctors surgery now felt like a danger zone to me. A hazardous area. A place to avoid at almost all cost. So I made the executive decision to not go. And what’s more -here comes confession number two- I therefore also decided to under-dose myself. Yep. Instead of popping 6 or 7mg of warfarin a day, which would make my blood very thin… I opted to take just 5. Yeeaah, I’m kinda naughty… however the decision was made with great thought. I deduced that although this slightly lower dosage would not thin my blood to the ideal INR level -it would stop it clotting a bit; and more importantly, it wouldn’t accidentally get over-thin. In contrast, taking my normal high warfarin dosage without monthly vampire checks and monitoring, would definitely result in non-coagulated blood, but may also result in dangerously thin internal bleeds. Faced with the two possible worst-case-scenarios -very thin blood or ‘normal’ clotted blood- the former would be far more dangerous… for me. So I weighed up the options, debated it thoroughly, and made the decision that was right for me. My body, my choice. No blood test, lower dosage.

But last week, I finally plucked up the courage to face the medical world again. Finally decided to test how thin my blood was! 🙂 I still felt uncomfortable and anxious about being tested in a closed consultation room accessed via a closed corridor from a closed waiting room. And although they offered me the first appointment of the day, to hopefully lessen the likelihood of catching anything from fellow patients… I wasn’t yet at that point in my rejoining society journey. I wanted to be outside. They refused to do the blood test in their car park ( Yep, I asked 😛 )… but instead offered to come to my home. How very kind. 🙂

And obviously it was fine. 🙂 It felt kinda surreal to be so close to someone after socially distancing for weeks. And it felt even stranger to be donning mask and visor and taking precautions. But she too was dressed as if I were a flea ridden dog… so we laughed together at the absurdity. And now I’ve done it once, I feel happier. Safer. Less anxious. I’ve started taking my correct and normal warfarin dosage, and I probably won’t wait quite so long until I go and get prodded again. 🙂

And I might even let the welcoming committee greet her next time! 😛