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.

A bit of a mix

I'm home. I got home on Tuesday evening after a lengthy wait for some of my meds that had inadvertently been left by the pharmacy hatch rather than being sent up to the ward. They'd been ready for three hours when they were finally located and then collected. Oh well, such is life. I never expect a quick getaway from hospital so I just get on with the wait and while away the time (or should that be 'wile'?). Anyway, I got home in the end and it's great to be here. The cat has been ever so cuddly >^..^< It's wonderful to be in my own surroundings with my own things and no hospital clatter :o) The only thing is that I'm exhausted and finding it hard work being at home too. My lungs aren't fairing too badly given how recently I've been discharged. The main problem is the anaemia and the iron. It's wonderful that the pharmacist managed to find a preparation of iron that I'm not allergic to, but I am having other side-effects - gastrointestinal effects that are getting me quite dehydrated, even though I'm trying to drink loads of water. I'm told these effects should wear off fairly soon, but in the meantime it's not pleasant and isn't helping me achieve a general feeling of wellness. And there's the anaemia itself. My Hb was still around 8 when I was discharged, which was a bit controversial, but as I have a suppressed immune system, and I'm a sitting target for infection the longer I'm in hospital, it was thought that I'd probably be better off at home. I agree, except that I don't feel great and I can't do very much of anything ... even staying upright is a bit of a challenge at times so I'm spending a lot of time sofa surfing and thinking about doing some study to catch up, but I don't have the mental energy to concentrate :o( I must get my head around some study at some point though, because I'm getting quite behind with my course now. I'm hoping that the gastro effects of the iron will soon sort themselves out, and that then I'll feel a bit better in that respect. The iron will take several weeks to have full effect on my Hb (so I'm told), but I should hopefully begin to feel some benefit much before then. I have to go for blood tests at my GP surgery the week after next to check that my Hb is starting to come up, and if it isn't then they're to look closer into the cause of my anaemia, but I sincerely hope that things are significantly improved.

One of the very disappointing things of this whole situation is that there's no way that I'm going to be up to doing my gym marathon on 25th. I know it was an (over) ambitious date to set in the first place, but I needed to set a new date when I did ... and now I'm going to need to set another one. This is something I desperately want to do, and I will do, but I'm not going to be stupid and do myself in in the process. I want to do it before Christmas, and I want to do it before the pre-Christmas craziness gets too crazy, so I'm now proposing to do it on 15th December. This gives me four and a half weeks from now to get back on track with health and fitness, and is hopefully more realistic than 25th November. I am disappointed, but I know that I'll do it, and in the end there'll be an even greater sense of achievement. Oh, and it gives people more time to sponsor me, or donate through my Just Giving page.

So yeah, a bit of a mix - it's great to be home. It's great to have my creature comforts and be with my little black creature (the cat). It's not so great feeling not so great and being so worn out. I'll press on and come through in the end, and while I wait I'll snuggle up in my cosy new slanket that I'm loving :o)

Sensitive

Friends are a wonderful gift and something I value most highly. I am extremely thankful for all my friends and know that life without friends is a very lonely life...



...And this is where this post gets extremely tricky. I don't want to come across as selfish, self-pitying or bitter - I'm not - but there's something I want to say that might be challenging.



Life is fragile and this is something I'm confronted with everytime I have a bad asthma attack. I am almost always faced with the very real possibility of my death, and however many times this happens I never get used to it. It's been previously said to me by friends that I've got through the attacks before so I'll get through again, but this isn't necessarily the case and it actually makes me feel pretty isolated, because it's a denial of the reality of the situation. It denies my experience. It denies the truth. It negates my fears. I know it's a defence mechanism for them so that they don't have to think about mortality - mine or their own - but it's unhelpful. The fact is that each time I go into crisis I am fighting for my life, and the fact is that I've already out-lived my life expectancy.



Asthma attacks are not only frightening, but also extremely lonely experiences. When I'm in the midst of a crisis I can't breathe enough to speak. I can't tell anyone how scared I am. I can't ask for anything I might want. There may be plenty of physical contact but it's from professional carers and almost exclusively involves the touch of a stethoscope, the prod of a finger, the jab of a needle, invasive and painful blood tests. Of course I appreciate that this is all absolutely necessary in the attempt to keep me alive, but it's all so impersonal and clinical ... and lonely. What I crave for at these times is not only for my life to be saved, but also the gentle touch of a friend; the company of somebody who cares about me for me; someone to hold my hand; or just have someone be with me, sit with me, help me through by being there with me. I truly appreciate how difficult it must be to watch someone you care about go through the experience of a severe asthma attack, but I don't believe it's actually as difficult as going through it. I also appreciate how difficult it is to be made to confront the reality of death and to consider your own mortality, but again, I don't believe that's as difficult as having a head-to-head with death. Now I'm not saying that I want crowds of people or a bedside vigil when I'm in crisis, but the company of a friend and that possibility of caring, non-clinical touch would sometimes be so very much apreciated. Yes, this has happened sometimes, and W in particular has been amazingly wonderful in this and many, many other respects, but usually people stay away until I'm well on the mend ... perhaps easier to face ... guaranteed to stay alive in the immediate moment. Of course these visits are extremely welcome and very important to me as well, but in a different way.



I entirely understand that people have busy lives and that they need to get on with them. I don't want to be the centre of attention. I don't want to appear to be ungrateful for all that my friends do for me and the time they give me when they do visit ... it's just ... Well, I need people when I'm desperately ill, when I'm scared, when I'm trapped in the isolation of my head because I can't tell anyone my fears or my needs because I don't have the breath. I need people to sit with me and just hold my hand when I'm in that post-attack big sleep. I may only be intermittently aware of their presence, but the fact that someone cares about me and is prepared to sit and be with me during those times fills me with hope, appreciation, love, and thanks. I know that it's boring sitting with someone who's asleep. I know that it's still difficult witnessing the aftermath of the struggle for survival, but it's through that struggle and in the aftermath of it that I most need love and support...



... I don't want to die alone or lonely. Would you?

********************

This has been very difficult to write and I've been very unsure about posting it. I don't want my friends to feel unappreciated or got at. I just want to be honest, tell it how it is and maybe make all of my readers consider what they can do to help someone in the moments of life and death. Even if you feel that what you are doing is nothing, or that there is nothing that you can do, the fact of being there can be the most valuable thing you can do or give.

As expected

It happened. I splatted. I just about lasted the Thursday, although I was going downhill significantly by the evening and knew that I’d end up in hospital by Friday. I think I mentioned that I had to go to my GP early on the Friday morning anyway for my blood results, the conclusion of which was that I’m anaemic and they didn’t know how to treat it because all the iron preparations they could find had something in that I’m allergic to. After we’d talked/gasped through the blood results the doc asked, ‘So how is the breathing?’ which really was a rhetorical question in the circumstances. My short answer was, ‘Rubbish. I’m going to hospital after this,’ and I’m sure that had I not told her I was going to hospital, going directly to hospital and not passing go, that she’d have called the ambulance there and then. She looked fairly reluctant to let me out of the surgery in the first place, but I just about managed to explain that I’d seen my consultant the previous day and we had a plan.

I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.

I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.

Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.

You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page