Sorry this is long… but it has a genuine ‘what should I do?’ at the end, so bear with me…
As you know, on Thursday I came across the only medical professional that I’ve found incredibly difficult and rude. I also suspected she wasn’t very good but I had no evidence of this. I blogged that if my INR dropped again today, I’d tell you the other bit of the story about her. It did, so – unfortunately – I now have evidence. So let me tell you the rest of what happened. Then you can advise me what to do about it.
(If you have no idea what I’m on about, read Seriously naffed off and This Too Will Pass first. But, basically the woman in the anticoag clinic was rude and didn’t listen to me and, I suspected, and now know, did the wrong thing too).
Anyway. My INR today is at 1.7. It needs to be between 2 and 3 to protect me from further strokes from the blood clot that’s still in my neck. Warfarin is the drug that increases one’s INR but everyone is different, so it generally takes 6 days to stabilize the dose. They take blood every day during those days and alter your dose accordingly until it hits and maintains within the therapeutic range. We’ve been working on this for 11 days so far, and I’m still not on a stable dose yet. While they are doing the stabilising, you also have daily Clexane injections as well. The Clexane keeps your blood thin until the warfarin takes over this job; once you’re stable on warfarin, the Clexanes stop.
This is my personal graph – warfarin is dosage in mg, INR is the level it was at (tho days I didn’t get tested I’ve put in a midpoint to make the graph work (medics will want to know that!)) clexane is 1 if I had it and 0 if I didn’t:
So why am I worried about the nurse. Well, on Thursday I switched from getting my bloods/doses done in ‘trolleys’ (the acute assessment unit where I’ve been going every day) to the anticoagulation clinic. You can read previous posts for nearly all that story. The bit I said I wouldn’t tell you unless my INR dropped is as follows:
When she gave me the warfarin dosage and said I didn’t need the Clexane I questioned it and she said it was fine: I trusted her on this bit – after all, what do I know. However, I wanted to know how we’d know if that was doing the job, seeing as it was Thursday (28 Oct) and I wasn’t going to see her until Tuesday (2 Nov). I’ve been watching this every day and it seemed fairly obvious to me that if she didn’t knock up the dose properly that the INR would drop. I don’t want another stroke – thank you very much – so I asked the question. She said that if I was “that stressed about it we can get you back in to trolleys on Saturday if you want” and I said “well of course I don’t want, I’m asking the question really, if you tell me its fine then Tuesday is fine, I’m just checking you’re sure” and she said, “well I think you’re stressed about it so I’ll bring you in to trolleys again on Saturday”. (See previous note about how she then went on to give me a fatuous lecture on getting on with life (which still makes me mad, what the heck did she think I was doing? If I’d stayed as long as they suggested – i.e. until the warfarin was stable – I’d still be in there now!!!). Anyway, I kind of wanted it checked on Saturday because I wasn’t entirely sure I trusted her, so I shut up.
Anyway the INR dropped. And because I had no Clexane cover, I had to go back to the hospital for a second time today . (And getting back is no mean feat in itself, let me tell you!)
The good things to come out of this – and it’s important to note them! – is I got them to let me do the jabs myself, so I don’t have to go in tomorrow because I can do it myself now. And, I feel safer again knowing someone sensible is on it instead of her. And, my headaches have gone again this evening, possibly because of the drugs (?!), which is always good.
So… I felt rubbish last night… I felt really rubbish this morning. Which now makes complete sense. Then I had to go back to the hospital for a second time today to fix the issue. I believe this happened because she (a) didn’t listen and (b) didn’t take appropriate measures. I’m not going back to her clinic as, even if there is a problem with my GP taking over, I’ll simply find a way to ensure this doesn’t happen. However I have a quandary. I know I can’t do nothing, because there are stroked out 80 year olds – and, actually people my age who didn’t come out of it as well as I did – who are relying on her and not up to questioning what she’s doing.
(Heck, I was only questioning because she wouldn’t let me write things down in a way I could understand and kept snatching my yellow (anticoag record) book away so she could write down her version (Me: Are you going to keep snatching it like that? Her: Yes Me: We’re going to have to think about a system if this is going to work. Maybe you could write in a spare book so you have your own and I’ll bring it with me every time for you, and I can keep this one I’ve had for 2 weeks. Her: No, you can transcribe what you want but I’m going to do this as I want it to flow. Seriously. She had about 50 yellow books there: she could have done anything she liked; all I wanted was control of my own bloody book that Duncan had given me and I’d been keeping with the trolleys people. It’s the only way I know to keep track of what’s going on. She was actually rather lucky she upset me and I was trying not to let her see I just wanted to cry, else she’d have gotten it with both barrels.))
Anyway. Bottom line. Her dosage was incorrect. And she stopped the Clexane which would have provided cover til I was back in range. If I hadn’t had made a fuss I would not have found out that my INR was out of range until Tuesday, by which time it would have been far lower; no one would have upped my dose (which they did today); there was no Clexane protecting me in the meantime (which there is now). Basically, I could have had another stroke or three.
With the strokes I had there is a 10% chance of death and a more significant chance of proper damage (which I got away with last time). At the very least I’d be in hospital all over again and starting from scratch. I’m ok, and this isn’t going to happen to me because, even in a mildly dazed state (which in hindsight I was) I was pushy enough to question her and take responsibility for my own care. The more stroked out can’t do this. Hell, some days I can’t do it.
I don’t think this woman should be working unsupervised. I don’t want to make trouble – not least because I’m in this system for another 6 months and I don’t think I’ll get a good run of it if they think I make trouble – but, basically, I think she doesn’t listen and is dangerous as a result. If she worked for me, she’d be removed from post immediately and not be allowed to work unsupervised until she’d had further training and been signed off as competent.
In most situations I’d take the problem to the person involved. That is still an option. I could write a letter to her and take it to her at the next clinic. But I won’t know til the day if it’s a day where I’m up to it.
So… what should I do?