A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Thursday, 26 November 2009

All the king's horses and all the king's men

I have been in hospital again since I last posted, but this time not for my lungs. Last Thursday afternoon I got fed up with this passing out and dizziness thing so I phoned the GP surgery to see if by any chance they had any appointments for that day or the following. I spoke to one of the receptionists who I know very well and she said that they only had emergency appointments. I said that I didn't think it was an emergency but told her what had been happening, and it seems that my idea of a GP emergency is very different from theirs and the receptionist urged me to take one of the emergency appointments for early that evening. I did. I went up for 5.30pm and was seen by the on-call GP at around 5.50pm. She was very concerned, decided that I needed to be in hospital and was all for calling an ambulance. I said that I didn't want an ambulance - I spend too much time in them and don't like them (and I also didn't think that my situation warranted one) - so she asked how I'd get up to the hospital and I told her that I was certain a friend would take me. I think she thought that I wouldn't go to hospital and said, 'Well ... okay ... but you must go to hospital and you must go today.' I promised that I would and then I went back to the waiting room while she wrote the letter for the hospital. As it turned out, the EAU (Emergency Admissions Unit) at RVI didn't have any beds at that time, but were expecting to have one around 8pm so I was to go up for then. This actually worked out better for me as it meant that I could go home, get my hospital case and sort out one or two other things, although none of this was easy while feeling so poorly.

My friend J took me up to EAU, and we were there for around 8.30, but it didn't matter that we were a little late, and it couldn't be helped anyway as J had work and family stuff.

The initial thought (mine, my GP and the hospital docs') was that maybe the anaemia was causing the fainting, dizziness, increased non-asthmatic breathlessness, palpitations and occasional slight chest 'discomfort', and that perhaps my Hb had dropped even further, but actually my Hb had picked up a bit. At 9.7 it's still low, but that's certainly better than the 8 it was at, and although it's possible that the anaemia is causing the symptoms it seems unlikely. I was admitted beyond EAU (you can be sent home from EAU after an initial assessment) for further tests and at 1am I was transferred to one of the holding wards at RVI. For some reason, at 3am they suddenly decided that I needed a chest x-ray! Why? I wasn't in for my lungs. I still have no clue why they did it and why, given that my lungs were in their normal post-hospital state, nor why it had to be done at 3am. I rather suspect that it happened to be a time that the radiographer had nothing to do. Then they did an ECG, which I can understand, but it's all very complicated as I'm allergic to the ECG electrode pads - my skin blisters - so it was a matter of get the stuff ready, get the pads on and the wires plugged in, get the ECG done, get the pads off, and immediately wipe away any residue of glue/conduction gel with alcohol gel. The trouble is that ECGs will only pick up what's going on at the particular time, which is about 1 minute duration, so nothing transient or intermittent is going to show, and sure enough, all the ECG showed was that I was tachycardic, which I could've told them anyway.

In the morning I had two doctors come to see me, one of whom stayed very quite while the other talked at me. He turned out to be a consultant. He said that my symptoms could just be a reaction to having been ill recently, or that it could be vasovagal syncope, but beyond that he wasn't very sure but didn't think he'd do any more tests at this time. He went away. I found this very unsatisfactory given that I was passing out about once a day and feeling dizzy pretty much all of the time, and that all vasovagal syncope really means is 'faint', and being told that I might be fainting because I'm fainting didn't seem like a good enough reason to me because people generally don't just fall about the place for no reason. I told one of the nurses that I wasn't happy and she got the more junior doc to come back to me (I don't think he was very junior - maybe an ST1, ST2 or an SpR). He was much better on his own, much more receptive and actually listened to me. I told him that I didn't agree with the consultant's suggestion that it may be a reaction to having been ill as I live in a state of chronic illness, and while I'd had an acute exacerbation I've had worse attacks before and this has never happened after any previous attacks. He agreed. I also said that vasovagal syncope wasn't really an explanation of any kind, and actually how could they know this is the cause if they weren't going to do any kind of test for it. He looked a bit awkward, was surprised that I actually knew what vasovagal syncope is (I think they'd been hoping to pass me off with a long, impressive-sounding word), and then said I probably needed to be in hospital a while longer to keep me safe if nothing else, seeing that I live on my own. I wasn't thrilled with the prospect of another admission, especially as I'd only been out of hospital for 9 days or so, but at the same time I wanted something to be done, or at least looked into. I was transferred to ward 16 at Freeman Hospital a little later on. I'm still puzzled as to why I was on Ward 16, because although it is ostensibly a general medical ward, it's actually more specifically a gastro ward, and more specifically still a drying-out unit. Not really where you'd expect to find someone who's passing out, and unfortunately this was reflected in the care that I got as they seemed to have little clue what to do with me. I didn't see a doctor at all over the weekend, even after passing out in the bathroom, and I ended up feeling as though I was having to do all the thinking of possible causes so I wrote a list and gave it to the docs when I did eventually see them on Monday. To be fair, the two docs I saw on Monday were nice and were, more importantly, receptive to my suggestions and went through them. They agreed that although some of my symptoms suggest vasovagal syncope they don't entirely fit, and also there still has to be a reason why the vagus nerve would be being hypersensitive. We'd eliminated orthostatic hypotension as a possible cause by doing lying and standing BP, and while my BP dropped a bit on standing it was only by about 10mm Hg and still within normal range. The registrar said that while it was unlikely that the anaemia's causing it as my Hb is picking up, it is still a possibility in which case it should resolve itself as my Hb picks up further, and that should happen as the supplemental iron gets further into my system. I suggested that maybe it's an inner ear thing. She didn't think it sounded quite like that, but said that the F1 (junior doc) would come back and have a look in my ears to be sure, but actually that never happened. The other possibility is that it's something to do with my heart, perhaps it skipping a beat, and she said that they'd do a repeat ECG, although again this would only be a one minute snap-shot of that particular moment so wouldn't necessarily be terribly helpful. However, she said that they would order a 24 hour heart trace, which will be 'fun' given my allergy to the electrode pads and I think I'm just going to have to dose myself up on multiple antihistamines for the duration and put up with some skin blistering - better to have that and maybe get an answer than have no chance of getting an answer. She's also referred me to the falls and syncope clinic so I'm now waiting for an appointment for that to come through, but it will be a couple of weeks at least till I'm seen there. In the meantime I've been discharged. I'm no better than I was before I was admitted and I'm still falling about the place randomly. I'm hoping that it will resolve itself just as it started, but there aren't any guarantees, and while it's still happening I'm scared and I feel very vulnerable. My friend S who's a GP was surprised that I was discharged home without any review of care needs, given that I live alone and there's a very real possibility that I could crash to the floor and crack my head on the furniture or break a bone; and the hospital chaplain was also very surprised. He tried to say something about this to one of the nurses and was flabberghasted by the unconcerned 'uh huh' response that he got. Since I got home he's been ringing me every so often to make sure I'm okay, or as okay as can be expected in the circumstances, and he's also been in touch with the charge nurse on Ward 29 to let him know what's been going on (nobody on Ward 16 thought to contact my regular care team even though this all started getting a lot worse very shortly after my admission on Ward 29). The charge nurse has since phoned me twice to see how I am, and has said that he's concerned about me. He also said that he'll tell my consultant what's been happening, so at least there's joined up care there, even if it's atrocious that this has had to be instigated by the hospital chaplain.

As you may expect, I have very little energy at the moment, and I'm quite emotionally drained by the whole thing too, but I've had to put what energy I do have into sorting some practical things for myself - things that Ward 16 should really have done. I already have the community care alarm in my flat, but I called them yesterday to ask for a review of needs and they've been out this afternoon. They're going to get me a falls detector, which I think must detect the speed that you go down otherwise it would go off if you lay down in bed I suppose. I don't know when I'll get that, but I think I remember them being quite quick when I got my initial alarm. The other thing I've done (and it makes me cross that I've had to do this myself as this really is something that Ward 16 ought to have done) is contacted social services for a reassessment of care needs. Now obviously I'm hoping that this is a transient thing that will resolve itself, but there aren't any guarantees, and at the moment I'm not particularly safe. I don't want 24 hour care if I can avoid it, because I don't want to feel like I've got someone peering at me all the time, but perhaps someone popping in to check that I'm not crashed out on the floor bleeding to death from cracking my head on the furniture or something, or maybe even someone to do some cooking as I'm not really terribly safe using the cooker at the moment in case I pass out while I'm doing that. It's all very difficult and I don't know what the answer is if I'm honest, but I think I need a reassessment so I phoned them yesterday and explained the situation. They were very nice and said to leave it with them, which I did and they've been in touch this morning. The earliest they can come out is the end of December. They said they have me down for Christmas day! Well that's not going to happen, is it, partly because I doubt they work on Christmas day, and secondly because I'm going away for Christmas. It looks like it'll probably be around New Year's Eve, and actually I'm away from 19th-30th December, so I'm guessing that it could even be early January before they can get to me. Not ideal, and I'm not terribly sure how I'm to get through the next 5 weeks or so if this continues, although my friends have been keeping a close eye on me since I got home on Tuesday evening, which is lovely of them. As I said before, it makes me cross that I've had to do the phone-running and organising all this myself, and if it weren't for some of my friends who either work in the system or know the system then I wouldn't have a clue where to begin, which then makes me angry for others who may be left in a similar situation to myself and don't have the knowledge of friends like I do. It's all very unsatisfactory.

So here I am, back at home, feeling ill, no better than before I was admitted to hospital on Thursday, still falling about the place on my own, no reassessment of care needs for 5 weeks or so, and no diagnosis as yet. At least I have a referral to the falls and syncope clinic, even if I do have to wait a couple of weeks for the appointment (and maybe longer as the hospitals are moving over to a new electronic system of some kind that nobody seems very sure how to work, so the chaplain said that I may need to do some chasing of my appointment. Joy). I'm scared. I'm trying not to worry, but I am scared and I feel very vulnerable, and sometimes I feel down right miserable. I also feel quite helpless and don't know what I can do about that.


Anonymous said...

Have you heard of Marie Fredriksson?

BeckyG said...

Hi anony, no I hadn't heard of Marie Fredriksson until I just Googled her. She sounds like a really interesting person, but I also very much hope that I don't have a brain tumour. I think I'm trying not to consider it being anything like that, but I guess there is always the slight possibility that it is. Whatever it is, it's scary, and the fear is both emotionally and physically draining. I would just like some answers really, and I don't feel as though I'm getting anywhere at the moment.

Sarah said...

Sounds rubbish. Wish I could be there, am sending you mental hugs to make up.

Joey Paul said...

I'm sorry that the care wasn't that good, and I'll admit that this does have me worried for you, please try and keep us updated as to what you find out..

Hope you feel better soon!