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

Today is the tomorrow that you worried about yesterday.

Saturday, 20 September 2008

Pear-shaped

Yup, it all went pear-shaped and the day after my last entry I ended up back in hospital. To be honest, I wasn't feeling dreadfully awful most of that day ... just pretty rubbish, but I was short of breath and did have some pain in the base of my right lung, which I thought may have been infection. Since the previous week I'd been planning to meet up with one of my OU friends and his wife for lunch on the day that ultimately went pear-shaped, and I managed to convince myself that I was okay to do this. Actually, I felt quite ill in a general 'I think I've got an infection and my temperature is a bit variable' kind of a way, but I enjoyed meeting up with D and his wife C and we had a lovely lunch down at Peppy's. However, once we'd 'done' lunch and they'd headed off back home after a short stop at my flat before going, I flopped and I gave into the 'I'm not well' thing that my body was telling me. I called the doctors' surgery to see if by any slim chance they might have a free appointment, but was 99.9% sure that they wouldn't as it's usually a case of having to ring up at 8:30am for an appointment and they're all taken by 8:31am. It being around 2pm, I wasn't surprised when the receptionist said that they didn't have any appointments other than emergency ones, so it was either take one of them or go to the walk-in centre. I um-ed and ahh-ed, saying (in part sentences, because I couldn't actually breathe enough to speak in full sentences - oops) that I didn't think it really was an emergency, but I was short of breath, had some pain in my lung, thought I might have an infection, but didn't think it warranted taking an emergency appointment ... on the other hand, with my medical history I wanted to see a doctor who knew me, rather than a random one at the walk-in centre. In the end I asked if it'd be okay if I took the emergency appointment for 5:30pm, and was immediately told, very warmly, that of course it was okay and not to be daft :o) End of call ... except that five minutes later the receptionist phoned back to say that she'd spoken to the doctor, explained what I'd told her and he'd said he wanted to see me straight away, rather than waiting until 5:30pm. Clearly we have different ideas of what constitutes an emergency ... or maybe it's that my emergencies tend to be critical situations these days. Anyway, feeling a little surprised by this turn of events, I put on my coat, picked up my bag, gave the cat a quick stroke and set out to the doctors' surgery. Now the surgery is only four parallel streets away, but I had to keep stopping to get my breath so it took longer than usual and more energy than usual to get there, but in the end I did and the receptionist on the front desk had been forewarned of my arrival and instructed to tell the doctor as soon as I arrived. He had someone in with him when I got there, but I only had to wait five minutes or so before I was called in.

The walk to the surgery (no, for some stupid reason I didn't use Taz to get there. Don't ask me why - I have no clue) had not only made me feel more unwell, but also made me realise that I wasn't well, so that by the time I got to see the doc I felt quite lousy. At this point I still didn't consider myself to be in a state of emergency, but the doc wasn't so convinced. He got me to do a peak flow and wasn't impressed with my grand score of 80. Actually, I was surprised by this as only an hour before hand it had been 130 (still completely rubbish, but a whole 50 better than it was by now), and I'd had a nebuliser since then too. Oops. He looked at me and said, 'For any other 'normal' asthmatic I'd expect them to be on the floor with a peak flow of 80. Can I listen to your lungs?' He did. His response to having listened to them was, 'Hmm, well I can sort of hear some air in the top of your lungs, but nothing in the bases.' Bugger. I knew it was coming - I knew he was going to send me to hospital - though he did first ask how I felt about it. I said that I had too much work (study) to do to be going into hospital, which prompted a somewhat incredulous and exasperated look of despair on the doc's face, and with that he rang my consultant at the hospital. During their brief conversation I could actually feel my lungs getting tighter and knew that I was now heading downhill rapidly. All of a sudden I didn't feel so bad at having taken an emergency appointment. Despite all this, I can't deny that I was disappointed at the docs' joint decision that I should get to hospital asap, so with a quick check that Ward 29 had a bed, a blue-light ambulance was called.

Usually when I'm ill enough at the doctors' to need an ambulance then I'm kept in the room with the doc or with one of the nurses, but for some reason on this occasion I was to go and sit back in the waiting room for the ambulance. A little irregular, but I didn't think much about it and started my breathless trek the twenty yards up the corridor ... in stages, like an expedition up Everest. I was on the third or fourth leg of my assent up the hall when I saw the FRU paramedic at the front desk asking where he could find me, and I heard the receptionist say that she thought I was in room 5 (where, indeed, I had been). I raised my hand and said as best as I could, 'I'm here.' To say that the paramedic looked aghast would be putting it mildly. He took hold of me, said, 'Bless you, you're really tight there,' and then turned to the receptionist saying that we needed a room now. There's a treatment room just off the waiting room/area that's used by the district nurse etc and this was immediately unlocked for our use, so I was guided into there, sat on a chair, and supplied with oxygen while the lovely paramedic called Dave (so his uniform told me) got a nebuliser sorted for me. During this time the ambulance crew arrived, and were shown in, whereupon Dave told them how he'd found me struggling up the corridor on my own even though I was clearly very ill. I could see their point, but I have to say that on the whole my GP practice are superb, and this is one slip in years of fantastic care from them so I don't hold a grudge.

Anyway, they got my history from a combination of a print out sheet (or four) the doc had handed me to give to them; all my cards and laminated letters; and an increasingly breathless conversation/gasping of words. Dave was pretty keen to get some hydrocortisone into me, but this required a cannula and after two attempts he'd had no luck so instead he and the ambulance crew decided just to get me into the ambulance and on my way to the Freeman Hospital. Once in the ambulance, he actually tried to cannulate me a further three times, but my veins are so over-used and scarred from hundreds of past cannulations that it's not at all easy to get venous access in me these days, which I have to say is something of a concern. There was no success in the cannulation department so we sped off up to the hospital, Dave having left his FRU car outside the GP surgery so that he could accompany me in the ambulance as he 'didn't trust [me] not to go off.'

On arrival I found my consultant had come up to the ward to see me as I came in (very nice of him, I thought ... though also rather an indicator of what shape he thought I was in). The ambulance crew and Paramedic Dave handed me over to the nursing staff, and then there was the swarm of medics ranging from F1 (previously known as House Officers) to consultant with everything in between, all of whom were desperate to get a cannula into me. I had an F2 at my left hand, an SpR (registrar) at my right hand, and the consultant at my feet, and a small cheer went up when the SpR (S, as there was more than one SpR there - also V, Re and Ri) eventually got access in my right wrist. Then it was time for blood gases (horrid things), followed by a quick injection of hydrocortisone before my usual aminophylline infusion was started, and the ITU team were called to come and see me.

It was a fight. It was exhausting. I went into acidosis - both metabolic and respiratory, so I was told. I did something new too - I managed to get dangerously dehydrated, which was all a bit weird, and I ended up needing so much IV fluids that they called it 'resuscitation'. I'm not quite sure how, but some how I managed, by the skin of my teeth, to avoid going down to ITU, although the anaesthetist was up to see me four times in the first night alone, so it really was a close call. After about 38 hours or so things started to settle and they all got ever so excited when I finally had enough breath to create a small wheeze, as up until this time I'd had a silent chest. Some time after that I finally had enough breath to sleep, and sleep is something I do very well after a long exhausting battle with asthma, so I stayed asleep (being half-woken briefly and intermittently for nebulisers to be given, bloods to be taken and gases to be checked) for 48 hours. It took a long while for me to get through the sleepy stage this time, and although I was more awake than I had been after this initial 48 hour sleep, I remained very sleepy-tired for a number days. It also seemed to take longer than usual for things to really settle, which is most likely why I was still so tired I guess, and I ended up needing to stay on the aminophylline for eight days, when I'm usually on it for more like four or five. I don't know why this is - whether it was just this particular attack, whether it was down to how acidotic I got, whether it was the queried infection (as indicated as a possibility from my blood tests, though my x-ray was clear for infection), or if it's just that I'm getting older and recovery is slower. Whatever the reason, it took time for me to get my bounce back, but eventually it returned and I was well enough to resume my study worries. I actually ended up writing my final assignment for English Literature course whilst in hospital this week, at a point where I was still on the aminophylline infusion and on oxygen! I'm not sure if that's dedication, foolishness or the effects of hypoxia ;oP

I finally got home yesterday mid-afternoon, although this wasn't without it's complications. Sometime earlier in the week my dad had visited and had brought with him my foldy-uppy wheelchair (not Taz, the other one) so that he could take me for a trundle in the park over the road from the hospital :o) Now there isn't usually any problem whatsoever about getting me, my stuff and my foldy-uppy wheelchair back home from hospital, but most bizarrely there seems to exist such a thing as an ambulance that doesn't take wheelchairs! Excuse me, but huh?! I've got foldy-uppy w/c in a micra before, so how come it doesn't fit into an ambulance? It was all very weird, but the guy who initially came to take me home insisted that this was the case so went away again without me :o( This meant that my ambulance home had to be re-booked for the afternoon (I'd previously been told to be ready to leave at any time from 9:30am) and that I was put on the bottom of the list :o( However, a nice guy with an ambulance that did take wheelchairs came fairly quickly, picked me up, brought me home, carried all my bags into my flat and left me with a smile :o)

Home at last :o)

(Oh, and I've lost any trace of guilt I had about taking that emergency appointment at the GP surgery)

13 comments:

living_with_ba said...

Oh Becky, glad you took that appointment with the docs, my GP surgery is pretty good too...I just returned myself from a very short and very frustrating hospital stay, but I was starting to worry about you so I'm glad you're home okay...

Feel better soon *hugs*

Anonymous said...

Just an observation, but would you say that you enjoy playing games with the medics by hiding your symptoms from them and forcing them to respond with panic on your behalf?

BeckyG said...

Anonymous, absolutely not!! Why would one do that? And I'm rather curious to know what makes you ask that of me? There is nothing about my asthma that I enjoy, and I cannot imagine hiding symptoms from doctors so that they respond with panic. Because of the severity of my asthma, and its worsening over the years then I have probably become one of the worst judges of how poorly I actually am, simply because I am used to feeling ill so much of the time. That does not translate as hiding symptoms from doctors, only that I am in a dangerous situation. Can I ask what you think someone might gain from seeing a medic respond with panic? Personally, I know that when a medic is worried then there is reason for me to be worried, and that I may not survive the attack. I do not enjoy facing my mortality on a regular basis!

Anonymous said...

I only ask because I sense a perverse pleasure in your writings about how, for example, you hid from the doctors on the ward when visiting a friend in hospital so that they wouldn't see you using your inhaler. You were in fact seriously ill after that episode. Would it not have been kinder to have allowed them to see you and therefore to help you sooner? As I said, it's just an observation and not a judgement. Perhaps next time you are writing about how ill you are feeling, you could pick up the telephone and tell it to a doctor also.

BeckyG said...

There is no peverse pleasure or any other kind of pleasure in my asthma. I get pleasure from writing and I refuse to be miserable about my life as it's the only one I have so I will make the most of it. Perhaps it is that pleasure in being alive that you sense rather than a pleasure in illness.

When it comes to your comments about 'hiding'. I didn't, I just avoided being obvious. One of the things with chronic brittle asthma is that much of one's life is spent in a state of breathlessness that would have the 'ordinary' asthmatic in hospital receiving nebulisers and oral steroids (and possibly iv stuff too). However, I am on all of this medication and more on a daily basis so there is nothing that can be done until I reach the serious/critical stage. There is little point in seeing a doctor when you both know that there is nothing they can do until you deteriorate that bit more. There is also no point (or reason) to cause concern to medics and nursing staff who don't know you or your condition. I have some level of attack everyday - it's a part of my life - which I manage. I can't be, and don't need to be, on the phone everyday calling a doctor who doesn't need to do anything for me as I can manage these daily situations myself, and who can do nothing for me because I'm already on maximum treatment bar intra-venous meds, which are reserved for crisis as they're my only rescue option before life support.

You are right that shortly after visiting my friend in hospital that I ended up in myself, but nothing that anyone would've done had they seen me nebulise that day would've have prevented the spiral down. Sometimes I can feel quite ill for a period before a catastrophic attack, and indeed know that it is on its way, but as I say, I have no option but to wait until it crashes. And occasionally it doesn't crash, but breaks and picks up again. Such is the unpredictability of brittle asthma.

I appreciate your sentiments in suggesting contacting a doctor as well as writing about feeling ill, but as I say, I can't and needn't do this with every wheeze or downturn or I'd be doing it everyday. Brittle asthma is a somewhat different disease from 'ordinary' asthma that 99% of asthmatics live with, and it requires different management. I work closely with my consultant (who is the regional specialist in asthma and actually writes the national guidelines for the treatment of asthma) in managing my disease and together we have worked out a plan of care. This includes daily management and monitoring as well as acute treatment protocols. As I said before, because of the relentlessness of the disease and being so used to living with a very reduced lung capacity/breathing ability I have lost some of my judgement of how ill I actually am at times. This means that I can misjudge the severity of things. On the other hand, there are times when I am a good judge of how things are, but knowing the difference between these times is a challenge ... and I don't really know what to do about it.

I suppose the other thing is that I have a stubourn streak, which works both for me and against me. It has got me through many a life-threatening situation in a determination to fight for life through complete exhaustion and when (I've subsequently been told) that medics didn't expect me to pull through. It also means that I am determined to make the most of what life I have and do what I can when I can. But as we see, it can at times mean that I push myself too far and perhaps don't always go into hospital quite as early as I might otherwise.

One of the difficulties of living with brittle asthma is that the boundaries change all the time; not just from day to day, but from hour to hour and sometimes minute to minute. My asthma is such that on occasions I can be in a state of relative wellness and then as quickly as ten minutes later find myself in the throes of a life-threatening attack. That is the beast of brittle asthma.

Purely out of interest, if you can imagine yourself in this situation (which I know is difficult as theory is different from reality), how do you think you would manage your situation, given all the information I have about the impact and consequences of living life with brittle asthma and the nature of the disease's unpredictability? As I say, this is purely out of interest, and I'd be interested to hear your ponderings.

BeckyG said...

Having looked again at my post 'Uncertainty' where I talk about visiting my friend in hospital, I see how my tone could have been perceived as taking pleasure in avoiding the doctors. It was not meant as a perverse pleasure, and actually I was incredibly unlikely to bump into any of my docs as they are based in a different block of the hospital. Had I actually seen any of my docs in the corridor I wouldn't have avoided them/hidden from them, though neither would I have made a point in telling them I didn't feel too grand. We would probably have passed by each other with a smile and an 'hello'. I suppose when you spend a lot of time in hospital there is a strange kind of pleasure in going there and coming out again on the same day without any intervention from a medic, but it's not perverse ... rather it's the pleasure of a bit of normality. Perhaps that's not explained very well, and I'm not sure that at the moment I know how to explain it any further ... I shall have to think about it. I do see how my tone could've been construed in such a way as you describe, but that's not how it was intended or how it was.

Anonymous said...

Thanks for responding in such detail and for considering all angles. My questions reflect the fact that:"The
studies have also highlighted the inappropriate coping response
to worsening symptoms of asthma by delay in seeking
medical help" (see http://www.bentham.org/crmr/sample/crmr3-1/D0003MR.pdf ). And also, I have to wonder why you keep a cat!

baycitywalker.com said...

Ive been reading through some of your posts and I just wanted to say, that I can totally relate to a lot about what you write about as far as living with asthma.

Ive had asthma ,continuously since birth, and though I didn't read the post that was referenced by one of your readers, I have definitely done more than my share of hiding my symptoms from people ( including doctors).

I also know what you mean when you say that your asthma is so severe that nothing else can be done, so why bother. Boy..have I felt like that.

Hang in there, never give up, live for the good breathing days!

BeckyG said...

Anon, that was a really interesting article, and one that I haven't come across before. Out of curiosity, if you're reading stuff like that are you in the health profession or an otherwise interested party? In response to what they said about the delay in seeking treatment (so far as I can remember, because I read it yesterday and my brain is sieve-like at the moment), I think that there are times when their opinions may be correct, or may play a part in the delay. However, personally speaking, I also know that it is a perception thing. For instance, when I was 16 my peak flow was great at 560 and if it got down to 300 I would be seriously struggling and would need to be in hospital. Gradually my body has adapted/perception has decreased as my asthma has become worse, so that now my best peak flow on a good day is 300, but I often live with it hovering around 200. When I have an acute attack I've been known on many occasions to have no peak flow at all. I have had to adapt in order to live, and also know that if I'd had a daily peak flow of 200 when I was 16 then I wouldn't have coped at all, and certainly wouldn't have felt like I could lead any kind of life. It's odd, and I'm not completely sure how it works, but I suspect that some of it is a biological compensation in some respects ... I dunno. I'm rambling now.

As for keeping a cat, it's a matter of having a balance in life. I am allergic to some cats, though not so bad with others. I don't seem to be so bad with mine, probably partly because he's short-haired and partly becuase I've lived with him for so long that I've built up some immunity. With my health as it is I spent long periods of time in the house, and other than the cat I live on my own, and this can be a lonely experience. The cat is good company and, because of that he is good for my mental health. I've had very severe depression in the past (thankfully wonderfully free of it for over 5 years now) and my mental health is something that I value enormously. Psychological wellbeing also impacts on physical wellbeing, imo, so whilst it may not necessarily appear sensible to have a cat, he keeps me company, he has a positive impact on my mental health and that has a positive impact on my physical health.

In addition to all that there's the fact that there are so many things in this world that I am dangerously allergic to and have to avoid at all cost, which isn't an easy thing to do. There are lots of things that I miss out on because of these allergies, and it seems that as time goes by I am getting more and more allergies. There are many things that, as I say, I *must* avoid, and then there are things that can provoke an allergic reaction, but won't kill me if I come into contact with them. Sometimes I will take a small risk in exposing myself to these allergens so that I can actually do something that I want to do, but would otherwise miss out on. I don't take stupid risks, and I know to be aware of any reaction and stop if I'm in doubt as to its progression, but I want to live a life that's worth living. It's a quality of life balance thing. I take a risk just by getting out of bed everyday, because I know that accidental exposure to the wrong thing, or doing slightly too much (whatever that is on any given day/point of any day) could cause me severe problems, but I take the risk, because I want to live and make the most of what I have. Having the cat fits somewhere into all of that.

By the way, now that I've got over my initial anger at your original comments (it's very difficult to tell tone of voice on these things, so I wasn't sure how to take what you were saying), I've enjoyed our conversations.

Becky.

BeckyG said...

Baycitywalker, thanks for your comments, and it's good to hear from another severe asthmatic (although not good that you have severe asthma!). I think many people who don't have severe asthma, or contact with those who do, can find it very difficult to understand what it's like to be at the end of the treatment line. Asthma is one of those things that's often thought of as a disease of childhood (and mine too started in childhood, with my first attack at 3 months old, apparently), and thankfully in most cases in well-controlled, but this means that when people come across those of us with uncontrolled and uncontrolable symptoms it's not understood. There's always the question of 'have you tried this?', 'have you tried that?', 'why don't you do this?', 'why can't the doctors do anything more?' Sometimes there just isn't anything more out there to try. My own consultant has said to me that I'm in a position where I have to wait for science to catch up with my disease, but that I might not live that long. It's a difficult thing to hear and a difficult thing to come to terms with, but I think it's also difficult for those around us to comprehend this situation, particularly for a disease that is most usually managed successfully.

Am I rambling again? ;o) I blame the revision.

Hey, and don't worry, I'm not giving in any time soon if I can help it :o) If I were planning on doing that I wouldn't be doing this degree with the Open University, or trying to make the most of each day and being damned sure that I get what I can out of life. Nope, I'm here to stay for as long as breathing will allow, and in the meantime I plan to get up to lots of mischief ;oP

Becky.

Anonymous said...

Me too, Becky (enjoyed our conversations, that is). Sorry for pushing you.
And please don't read anything more than is into this, but you did mention perception - which ties in with the observation that: "the severity of disease is linked to the presence of psychological disturbances and to poor perception of breathlessness" (see http://ajrccm.atsjournals.org/cgi/content/full/157/1/116 ).
Also, see http://tinyurl.com/4dyxcb (from the BMJ - the URL was too long to post, so I shortened it - it's safe to click on).

BeckyG said...

There probably is a degree of psychological influence in the perception of breathlessness, after all, breathing is the one thing that we do automatically, but also (in the normal situation) have some control over. I can't think of any other system in the body that has that dual functioning. And sure,as an example, most will know that when they get scared they breathe more rapidly. I wasn't completely sure of the conclusion the authors of the two articles you just sent the link to, though I did only read the abstract, not the full text. I mean, it appeared that some of the subjects had hyper-perception, which could perhaps mean that they would get more anxious about every change in their asthma symptoms. On the other hand, hypo-perceivers may have got so used to their restricted breathing that it no longer registers until crisis is almost upon them, which I think is where I'm at some of the time, as explained before. Perhaps both situations - and the fact of living life with a chronic condition - leads one to be more aware of general ill-health, as a self-preservation thing (in terms of being aware of those around you with infection and perhaps some anxiety that they may passed on to you, which could impact upon the asthma) ... which is maybe where the suggestion of hypochondriasis comes in. I'm not sure I wholly agree with this suggestion though.

When it comes to thinking a little more about 'psychological disturbance' it's complicated. I am open about the fact that I have suffered from depression in the past (largely reactive to life events), although I also know that in this respect I am well now and have been for a number of years. However, consider the psychological effect of frequently coming face-to-face with one's mortality. There's bound to be an impact, don't you think? I think it's worth wondering about the cause/effect situation in any correlation between a 'psychological disturbance' and any chronic, life-threatening condition such as severe asthma. Thoughts?

Becky.

Anonymous said...

I would come to the same conclusion as you about cause-effect, and also wonder about the direction of effect (that is, not simply considering any existing psychological disturbance in relation to severity of asthma, but also considering whether any pre-exisitng psychomorbidity gives rise to or *arises because* of a subsequent increase in asthmatic severity). Psychology and physiology are more intricately linked than we generally imagine and it would not surprise me if a psychological disturbance was in fact an indication rather than a cause of future physiological disturbances.

Hypochondriasis I would take to mean in its simplest form of misreading normal bodily functions and would also be connected with a change in sensitivity of perception - read on to the discussion in the first link I posted, which states: "Moreover, the ability to perceive the severity of asthma can be significantly reduced by the duration of its presence. Similarly, in sensory processes, prolonged periods of stimulation result in a consistent reduction in perceived magnitude, which is a process known as temporal adaptation".