This is an interesting one. Sadly, the little science experiment is me.
Some of the details are missing. That’s because it’s easier not to explain everything so you’ll just have to take my word for it that the general jist is here.
Here’s your conundrum: what do you do with someone who is on aspirin (post-clexane and post-warfarin) to prevent the blood clot that’s still in the back of their neck from doing any more damage when you need to prevent them bleeding because they’ve just bled out so seriously that their haemoglobin is now, apparently, a worrying 7.5 instead of the 12-16 that is normal?
That’s been the issue for my GPs over the past two weeks. I use plural deliberately since they seem to be working on it together, such is the issue, apparently.
Let me backtrack.
About three weeks ago I had a bleed that I knew was all wrong and a little bit too serious. Bleeding is something I do well anyway. Cuts, bruises, nosebleeds, being a girl, my blood usually prefers to be out rather than in if it has a chance to escape… But even for me this was not good.
So I broke the habit of a lifetime, called NHS Direct and, on their instruction, got “to A&E right now and tell them you need to be seen within the next 20 minutes”. At A&E they ignored me for about an hour.
Then took some blood from me, and ignored me a little bit more. Then, when I passed out cold, they took a little notice. My blood pressure had dropped to something like 50/70 which was enough for them to start moving things along. The already installed cannular got plugged with two bags: blood products and saline, and the bleeding stopped spontaneously around 11pm, about 5 hours after it started and 3 hours after I got to A&E. They invited me to stay the night but, after ascertaining that all they were going to do was give me some drugs to take home in the morning I said I’d come back and get them and – to a nurse saying, “You’re doing exactly what I’d do in your position, just come back if anything changes,” as she handed over the AMA forms (“Against medical advice but, in your case, it’s really with medical advice”) I went home.
The next day I went back to pick up the drugs. In discussion with the pharmacist I realised that, even though the fact I’d had the stroke and was on aspirin was all over my notes, one of the two drugs I was paying for was a clotter. Brilliant. As there was no immediate problem anyway, the pharmacist and I agreed the best thing to do was take the drugs they’d just dispensed but swallow neither of them and wait until I moved home that weekend, to a new city, and take it up with a new GP.
So I moved on Saturday, got the GP on Monday and met her on Wednesday. She’s brilliant. They all are here. And I can tell you that this city well outside London does things fast… I mean fast… and they are nice to you… and sensible about things… let me explain… (the bits in brackets suggest what may have happened in London!).
Wednesday: Meet GP. She says I can’t take one of the precriptions but keep hold of the other in case I need it later, and orders scans and bloods and my notes from London. (In London, I wouldn’t have actually got in to see her yet.)
Thursday: I call the local hospital to book scan as requested. They have no record of me since I’m new to the area and haven’t been processed yet. They book the scan anyway for the following Tuesday and ask me to “just get your doctor to give you a signed form before then and bring it with you, if that’s ok?” (In London, they’d not have done a thing until I’d been on a system of some kind, I’d have had to have waited for the referral before they’d have made an appointment by letter. It would’ve been for a month later and would have been rescheduled by them later on at least once.)
Monday: bloods taken
Tuesday evening: I’ve gone back to London for a party. In the evening the GP calls to ask how I’m doing because my haeomoglobin is so low I should be feeling awful. She asks if I can come in. I explain I’m at a party. In London. And I’m fine. She asks when I’m coming back. I say just after midnight. She says fine, but come in first thing tomorrow. I get back home at 01:00. (In London, I don’t know if they’d have called or not, to be honest. I wouldn’t have gotten a first-thing appointment with her though.)
Wednesday: I see her. I get a prescription for iron, another for something to make sure I don’t bleed that’s much stronger than the one A&E gave me, and more bloods done. She asks if I’ll consider a blood transfusion. I say if I need it then fine, even if I would feel bad because the Blood Bank doesn’t want my blood any more. I collect the scrips. Later that evening I open them up and note that the one for bleeding says I can’t take it if I have had any clots in the past. I call the surgery to find out if they knew this was a contra-indicated drug.
The GP on call turns out to know all about me. “You’re the conundrum around here at the moment…” Oh great. We agree I’ll take the non-dodgy ones from A&E instead. He also makes it very clear that “while we try to keep people out of hospitals and away from A&E” that if I bleed in any way, shape or form, I’ll go to A&E and announce on arrival that my heamoglobin is 7.5 and I’m bleeding. Apparently it’s a short cut to the front of the queue. Take note if you ever need to promote yourself in line… He says he’ll call me in the morning when he’s checked it all out a bit more.
I get home and realise that the non-dodgy also say don’t take them if you’ve had a clot and are, therefore, also dodgy. I’m tired. I can’t be bothered to call back. It’s late. I do my own little risk assessment over 30 seconds: bleeding out tonight when i’m neither cut nor bleeding vs a likelihood stroke from the clot still in the back of my neck from just one or two of these white disks until we sort it? I take the tablet. And realise I don’t actually know where A&E is in this city anyway.
Thursday: The surgery is my second home. Good job I don’t feel actually crap because it’s at the top of a very steep hill. I drop in a note to say the tablets we agreed I’d take are also contra-indicated and ask if they can give it to the GP from last night before he calls back again. The GP from last night calls to see how I’m doing. He doesn’t have my note yet. They call a lot. Kind of them. Kind of weird too. But ok. We talk about the tablets and agree, on balance of risk, that I’ll take them while they figure out what to do.
Friday: GP from yesterday calls to say would it be ok if they rang my neuro in London. I give him all the details. I can recite my patient number. I think he’s surprised but hey ho. Original GP calls back a few hours later. She’s spoken to my neuro and they’ve agreed I can take the weaker tablets – the ones from A&E – but less of them and we’ll work on a better solution ASAP. I said, “oh, cool, if he’s chilled about it then so am I.” She said, “I wouldn’t say he’s chilled… he’s balancing the risk like we all are.” Yes, dear reader, I am a walking risk assessment. There is irony in that if you actually know me… She carries on, “And like me, he is asking you to be very careful not to get pregnant in the next few weeks.”
Did I mention that? Everyone going on about me not getting pregnant in the next few weeks? It comes up a lot. A lot. Like really a lot. It came up a lot on the warfarin, now it’s coming up a lot a lot. Part of you wants to say, “Um, you know how old I am, does it look like I’ve been unable to control this element of my life in the past?” but you don’t. You just say, “Yeah, ok” and realise that if you were planning on being pregnant in the next few months you would do it anyway because you know how that would be handled better than the GPs do yet, because you’ve loads of friends who’ve had strokes who’ve done this already, and the GPs have not. (I have a friend with Sickle Cell who once told me that sometimes when she has to go to A&E she wishes whoever is there would just shut up and do as she tells them because she’s been doing this consistently for quite a while and they have not… I’m starting to know how she feels.) Anyway, I digress.
The GPs also acknowledge, perhaps uncomfortably, that the end of my note includes a very clear point that – in extremis, and I mean in extremis and not anything else – I’d prefer to bleed out than stroke out. My reasoning being (a) one can feel and see a bleed and do something about it, while you don’t know about a stroke until it’s too late and (b) on an informed balance of risk issues, my family is – not happily – aware that their job if I was to suffered a very serious brain impairment is to switch me off. No heroics for me if the likelihood is permanent disability. I’ve seen people struggle with it. I don’t make judgment or take issue with anyone else’s choices or issues, but for me death is not as scary as permanent, serious brain disability. End of.
I’m starting to realise this really is a different case for the GPs here. A conundrum of preventing a good bleeder from bleeding whilst not inhibiting her anti-clotters from doing their job and not destroying her long-term fertility… oh, and she can read the drug inserts and make grown up decisions for herself too. I think they like me. I think they like the puzzle, actually.
Though I’d prefer to go back to being that boring person who doesn’t see their GP for years and then pops in for a holiday jab. Remember those days?
So, stay away from knives, tin cans with sharp edges, razors and broken glass for the near future. Being a woman, they’re already working over the compromise deal where I agree to do something that means I couldn’t get pregnant for a while even if I tried really hard, because that deals with one potential blood-loss-related issue due to gender. And I keep A&E on speed-dial until my iron levels get back to normal and we work out how to not let bleeds get out of control. I guess.
Let’s not mention to anyone that, in the process of sorting things out from the move two weeks ago, I spent quite a lot of today getting broken glass out of crevices and spaces it’d dropped into, eh? I’m really rather careful these days.
And my haemocrit is now 10. So there.