The daily life of a brittle asthmatic. The experiences of the disease, of multiple and frequent hospital admissions, and of making the most of breathing when it's possible.
A favourite quote and a way by which to approach life.
Thursday, 30 July 2009
Onward
In other 'onward' news, I've been seen by the doctor this morning and he says that they'll review things on Monday, but most likely I'll get home early next week :o) This one's been a long haul, but then it was a very bad attack so it's no wonder it's taking time to recover. But I'm getting there, I'm making progress, and as the post titles says: Onward!
Tuesday, 28 July 2009
Speaking of judgements ...
I was supposed to be arriving at court no later than 9:30 am, which means that I/the doctors are going to have to contact the courts as soon as they open to explain that I won't be able to be there. I'm guessing this will annoy the holey watering can thief - and possibly my neighbour A (key witness to the events) - as they're unlikely to be told of any postponement until after they've arrived. I'm sorry if I upset A, but not so sorry about annoying the holey watering can thief ... except that he obviously knows where I live ... ;o)
I hope that the courts are understanding in my inability to attend and the very short notice I/the doctors will be giving them. The original documents I received came with a form that I had to sign to say whether or not I'd be attending, but also said that if I didn't attend then I could be arrested! This whole thing is so ridiculous that somehow I wouldn't be surprised if I were to find myself being cuffed to a police officer by my hospital bed tomorrow afternoon. Unlikely it may be, but I fear it's not beyond the realms of possibility.
So the big questions are:
1. Will I be arrested for non-attendance at court as (non)witness to a crime I knew nothing about until after the event?
2. Providing I'm not arrested, will the case go ahead without me tomorrow?
3. Will the case be postponed so that I can give my non-evidence, satisfy my intrigue, and bring you a satisfactory conclusion to the whole affair?
4. Will the holey watering can thief be so annoyed at having his case postponed that he hunts me down, beats Wilfred to a pulp and makes another attempt at holey watering can theft?
So many questions, and all night to ponder them ... in the dark ... all on my own ...
;oP
Monday, 27 July 2009
Judgement
My first misjudgement was hanging on as long as I did before I got help, but as I explained in my post at the time, this was in part influenced by some previous experiences I've had at A&E and RVI and my therefore my extreme reluctance to go to either of those places, especially without someone who can speak up for me when I'm unable to speak at all. Of course, if I hadn't been quite so poorly I'd have been able to act sensibly and call an ambulance much earlier on, but my head was so scrambled by the lack of O2 and increased CO2 that couldn't think straight at all. This is scary. I think it was all made worse by the fact that it happened at night when I didn't feel like I could wake any of my friends, which again was probably a misjudgement as I'm sure they'd much rather have me wake them for help than find that I'm dead!
My next misjudgement was to walk to the GP surgery. I will never know how I got there, and believe it can only have been through the grace of God that I made it, because I really ought to have collapsed and probably died in the street ... or rather, the backlane - another misjudgement since they're so much quieter than the street and therefore I was less likely to get assistance from a passer-by. The only defense I have is that the backlane route is marginally shorter than the main road route. I literally staggered in a blue-tinged heap to the surgery and had to stop for breath (such as I could breathe!) every few steps. It really is a miracle that I got there, and I really ought not to have tried. If I were to continue insisting to myself that I see the GP instead of dial 999 then I at least should have asked for a home visit.
My lack of ability to make sensible and rational judgements at the time is highlighted by the very random nature of the things I put in my bag to take to the surgery with me. Now, somewhere inside I knew that I'd end up going to hospital from the surgery, though I was hoping with all of that part of me that knew it that I'd come straight to Ward 29 at the Freeman. I packed my medications, knowing that hospitals generally like this as it means that they have all your meds for at least the first few days until pharamcy come up with a hefty supply for the rest of the admission. Other than that I didn't take anything of any remote use - no pyjamas or toiletries. No, I took children's books, cross-stitch and tea bags! Again, this is an indicator of how unable I was to think straight, especially as I always keep a small case packed with all the hospital necessities in it, and although I got the case out I left it at home.
It's frightening, you know. It's frightening how completely unable I became to make the right decisions, and how quickly that inability happened. This attack was one of those ones though that snapped extremely quickly and snapped extremely badly so that within minutes I was in dire straights. I mean, what possessed me to think that updating my blog was what I needed to do instead of calling for an ambulance?! I know that it was an attempt to stop feeling quite so alone in the situation - a kind of reaching out - but it really wasn't what I should have been doing.
I know that the situation was made worse/more difficult for me because the events occurred during the night. I've had similar attacks to this in the past, but mostly they've been through the day or evening and I've felt much more able to contact friends, even if that's just been a text saying 'I'm not so great.' I'm not always very good at letting on what 'not so great' really means, but my friends are astute enough to pick up on my understatements and have done what's needed to be done - take control and tell me what I need to do, even though I already know somewhere inside what that is. As I say, this time I couldn't think straight enough to realise that my friends wouldn't mind being woken in the middle of the night and suffer some tiredness through the next day if it meant I stayed alived.
I need to come up with a plan for any similar occasions in the future. I don't know what this plan is going to be, and I don't seem able to think about it on my own. Everytime I try to come up with a solution my mind goes into the same muddled mess as when I was that poorly, which I think is probably due to the trauma of the events. I've drafted a letter to my GP asking if they might be able to help me come up with a strategy for future occasions, although I'm not certain they'll think themselves the right person for this so I'm giving them the clear option of telling me just to get my act together and do it myself if that's what they think is right. We'll see.
I know that I made a whole series of misjudgements this time, and I know that I was incredibly lucky to survive them. I can laugh at the randomness of what I took with me to the GP surgery, but I also know that it's an indicator of how poorly I was, and that's scary. The whole thing has been scary. I'm still trying to get my head around, and still not doing a very good job of doing so. I still think it's going to hit hardest when I get home, but there's no sign of that yet.
Friday, 24 July 2009
Detached
Recent events and my proximity to death last week haven't been helped by news I received on Monday that another of my asthmatic friends died last Saturday. It was a big shock, very upsetting, and (selfishly) rather close to home, particularly in terms of timing. I'm finding it hard to get my head around that, and I'm sure it's added into the distress of this attack. Well I know it has ... is ...
It's all a bit too much really, and right now I don't have the energy to cope very well, which is probably why my mind is trying to switch off from the emotion as much as possible. I'm not sure how helpful this is in the long-term though.
Oh, I feel like I'm rambling now. I'll shut up and come back when I'm a bit more coherent.
Thursday, 23 July 2009
I am alive!
After my last post I did make it to 8:30am (just about) and called the GP surgery. I managed to gasp down the phone to Michelle, one of the receptionists I know well, that I needed to see a doctor and would it be possible to be seen almost immediately. She said I would but was I well enough to go to the surgery. Well no, I wasn’t, but as you will know from my last post I lost all ability to make sensible judgements so I said I would get there, and I did ... but I walked! It can only have been through the grace of God that I got there without collapsing. I arrived. I waited. Michelle came through to say that Dr Cn (the emergency doc for that day) hadn’t come in yet and asked me if I wanted her to phone him. I managed to gasp, ‘Anyone. I don’t care who.’ Within minutes Dr Cg called me through. I was barely able to make it down the corridor by this time, but somehow managed to get to Cn’s room where Dr Cg was seeing me. Dr Cg looked aghast at my state and immediately said I was going to hospital, which shouldn’t have been a surprise to me, but for some reason it was. He listened to my lungs, took my pulse, dashed out of the room and came back very quickly with a bottle of oxygen, which he then plugged me into. Dr Cn arrived, apologised, glanced at me, and looked scared. Dr Cg looked scared back at him and then said, ‘No breath sounds. Weak pulse.’ I was left in Dr Cn’s capable hands ... not that there was much he could do. He too said there was no doubt that I was going to hospital, and although I was completely unable to speak by this time I managed to communicate through writing that I wanted only to go to Ward 29 at the Freeman, and that I’d had some bad experiences at A&E in the past, although at this time I was unable to explain what they were. He rang the ward. They had no beds. I was going to have to go to A&E. He called the paramedics and in the 5 minutes or so that it took them to arrive I told Dr Cn (again through writing) that I was scared; that I was always scared when I had an attack and that I never got used to being so close to my mortality. He didn’t try to avoid it or say it’d all be okay. Instead I saw the reality of it sink into his consciousness and he just said, ‘Yes.’ I am hugely grateful to him for that, because all too often people can’t cope with my fear, probably because it makes them consider their own mortality, and they try to squash it. Allowing me to say I was scared helped me to feel not quite so alone.
The paramedics arrived while I was texting family and some friends to tell them what was happening. Despite not having a working car, and having just finished a night shift, W said she was on her way to meet me at A&E. And while I was being whisked out of the surgery by the paramedics Dr Cn rang A&E to tell them I was on my way but that I didn’t like it there and was anxious about how I might be treated so please treat me well. That was so lovely of him, and I think it really helped.
When in the ambulance the paramedic gave me a shot of adrenaline to try to help things, then tried to get a cannula in, but my veins are so knacked that he didn’t manage and he didn’t want to hang around too long, so we set off with lights and sirens and the paramedic (I think he was called Brian) called through to A&E to prepare them for my arrival, giving an ETA of 5 minutes, which is pretty damn quick for around 5 miles through the city! When we arrived at A&E W had also just arrived and she met me at the ambulance door, having heard the sound of the nebuliser and guessing it was me. W followed as I was rushed into resus where a team of medics and nurses were waiting for me, and there started the desperate fight to save my life, which was ebbing from me. I have relatively patchy memories of events in resus, although more is coming back to me with time, and it’s helped to talk it through with W too who stayed with me the whole time (bless her, she’s been utterly amazing this past week and a bit). I know that when I arrived they weren’t able to get a blood pressure from me until they’d pumped a load of fluids into my veins at great speed, using a pressure bag on the bag of Hartmann’s Solution. I remember having blood gases done, and I know it was more than once, but not how many times. I remember having the aminophylline and salbutamol infusions put up. I remember them putting an arterial line in, and I remember them talking about intubation and getting all the drugs and tubes together for that. Thankfully I managed to avoid intubation ventilation, but they did put me on BiPAP – a kind of non-invasive ventilation (NIV). This isn’t a usual course of action for ventilation of asthmatics, but the ITU consultant anaesthetist who came to see me in A&E wanted to try it first as there are significant risks of intubation, which includes the risk of the tube aggravating the lungs and thus causing difficulties with coming off the ventilator. I was also very keen to avoid intubation if possible, and was relieved to find the BiPAP did help. I still certainly had to work very hard, and the pressures were relatively high (so I’m told), but any relief was better than none, and I became a bit more alert fairly quickly. The anaesthetist did say that intubation was a judgement call that ultimately they would have to make and that although there were risks with it, there were also risks with avoiding it, so at the end of the day if they felt they needed to put me to sleep then they would. Then we had to wait to see if I would improve enough to be shipped across the city to RVI ITU/HDU, or if I’d have to stay at the General Hospital (NGH) ITU. I really didn’t want that, because the last time I was there was when they turned off my best friend’s life support machine 3 years ago. Thankfully I did improve just enough for transfer, although the ITU SpR (registrar – one doc below consultant) came with me in the ambulance, bringing with him all the intubation equipment and meds in case of any deterioration. And the last thing the ITU consultant said to me was, ‘All the best. I hope you get through this one.’ I knew what trouble I was in, but that was an indicator of how much trouble he knew me to be in as well. Not easy to hear, but I respect him more for his honesty.
I stayed on BiPAP for 24 hours and in ITU/HDU for 48 hours ... or maybe it was longer ... I don’t really remember, but I was very keen to get over to Freeman Hospital Ward 29 as soon as possible. In part this was because Ward 29 is like a second home and I know that I’m in excellent hands, but also because RVI haven’t always been very good at checking on things I’m allergic to, and I’ve had some close calls in other aspects of treatment at times, so I feel like I always have to be on my guard when I’m there. Of course I had to be well enough to leave critical care first, but I did eventually make it over to Ward 29, and I’m still there now. It turns out that in addition to the asthma I also have a ‘heavy growth’ MRSA chest infection, which has been causing me to cough up some thick blood. My haemoglobin levels are on the low side too, which may have been caused by the MRSA infection, but the docs aren’t completely sure yet so they’re keeping an eye on that aspect of things too.
It’s been a very rough ride this one, and I’m only just beginning to get my energy back. I’m on antibiotics (doxycycline) for the infection and after a few doses of that I started to feel a bit more like myself, even if still rather wiped out. Given the time I’ve had, and the all too close call with death, it’s not surprising I’m exhausted, and the doctors keep reminding me of that. It’s good to feel like I’m starting to make more progress now, even if I do still have a way to go, and it’s very good to be alive.
Tuesday, 14 July 2009
Bad night
Two hours. Two hours till 8:30. Can I last? I don't know. Should I try? Probably not. Is sense or fear going to rule? I don't know.
I just need to sleep.
I need to somehow find myself in the Freeman and through the course of least resistence.
I need to be able to breathe. Damn it, I'd be able to make decisions if I could breathe ... but then, of course, I wouldn't need to make the decision.
I hate this.
I hate being alone with this.
I'm scared.
Monday, 13 July 2009
On the way down
I emailed the ward's Charge Nurse this afternoon to let him know where things are up to and warn him that I may be making my way to the ward before long. I've no idea if he's on shift today, or even if he is if it's an office day for him, but I know that he'll get back to me when he can. Sometimes this has been when I've actually been on the ward though and we've ended up emailing each other from opposite ends of the ward ;o)
So as things stand at the moment, my prednisolone (steroids) are at 60mg, my pre neb peak flows are around 80 and post neb peak flows have been up as high as 150. It's this post nebuliser figure that's keeping me from going in just yet, because although it's rubbish, it could be worse, and most usually is by the time I end up in hospital. I can survive at 150. Not so much at 80 though, which is why I feel a bit stuck between a rock and a hard place. I'm sure I'm going to end up in hospital, and it probably won't be too far in the future, but as ever, there's nothing that can be done until I hit crisis so for now I have to sit and wait ... and conserve my energy for the fight for my life that lies ahead. It's not a great position to be in, and to be honest it doesn't help much that I've been here so many times before. You never get used to waiting for a battle with your mortality.
Sunday, 12 July 2009
The second half
After being forced inside by the weather we were shown around V and J's lovely home and shown some of their amazing craft work. J does beautiful embroidery that he designs himself using pictures from books and photos, and he displays the finished pieces of art on the walls downstairs. V has the walls upstairs, on which she displays the most amazing pieces of patchwork/quilting that I've ever seen. They are truly breathtaking and I wish I had some pictures of them to show you, but unfortunately I don't. Not only does V do wall hangings, but also bed-spreads, cushions and was working on an amazing kimono. She is an incredibly talented woman, although far too modest about it when I said so to her. It was a great pleasure to meet V and J, and we'll hopefully be meeting again at the end of the month when V comes over here to visit her daughter who lives in Northumberland (and rather amazingly used to live just six streets away from me!).
A couple of days later we went to a medieval festival in Fougeres, which was being held in the old part of the town. Part of the garden/park was set up as a medieval village with various tents pitched as homes, campfires (which I had to be very careful about steering clear of because of the smoke), a few random medievally-type things I couldn't identify, and some stalls demonstrating medieval crafts/skills such as chainmail making. I think that some people were actually staying in the camp over the weekend (it was a weekend-long festival), and everyone who was taking part in the festival - as opposed to visitors to the festival - were in costume. Here are a few pics of the medieval village ...
Further up, near the chateau we came across a choir singing in the square. When we arrived they were singing an English madrigal that I knew from my singing days. They didn't seem very confident with it, but I suspect that was the English rather than the piece itself, and they soon showed themselves as a good choir when they did their next piece that they obviously knew much better and were more confident with. The choir were all dressed in medieval costume, and rather amusingly the condutor had a dog with her that was clearly used to standing in front of the choir.
We wandered around the rest of the festival, taking in the atmosphere, watching children enjoy donkey rides around the outside of the chateau, mooching around the various market stalls selling crafts and traditional foods, and enjoying the visual effects of some outdoor theatre even though we couldn't understand the French. I don't have any pics of the theatre, but here's one of a woman spinning wool in one of the market stalls ...Thursday, 9 July 2009
The first few days
... went into a church across the road from the chateau ...
... and then wandered slowly through the town gardens ...
Thursday, 2 July 2009
Traveller returns
The flight from Newcastle left on time, the weather was fine and all looked good for an easy time to Exeter, and all did go well until we got to Exeter ... or rather, all went well until we got *over* Exeter. I had a window seat and could see the patchwork world get closer, the dingy-toy planes sitting waiting at the airport as we flew over it, the sea and the land alternating as we flew round and round in circles, and gradually it began to dawn on me that we'd been circulating the area for sometime and I was sure we'd started rising again. I thought this was a bit weird, but figured that it was better to be unexpectedly going up than unexpectedly coming down. Then the captain came on over the tannoy, with that special, calm voice that people use when trying to placate themselves and pretend that everything's okay.
'Ladies and gentlemen,' he said, 'we had expected to have landed by now, but are experiencing a slight technical problem with the undercarriage. We are working to rectify this and then we'll have to do all the checks again, and get back in the flight queue. Then hopefully we can land.' That 'hopefully' was somewhat telling of the captain's feigned calm, and I could imagine him sitting in the cockpit swearing like a trooper, then composing himself and steadying his voice before speaking to his passengers.
A few panicked looks passed between one or two of the other passengers, with one of the ladies in the row in front of me asking with alarm, 'What does that mean?!' The guy next to me, who'd earlier told me that he designed/built helicopters, leant over to the woman and said, 'It means the wheels won't come down so we can't land.' This didn't calm her any.
I wasn't particularly concerned for some reason and just got on with enjoying the view, although I did eventually begin to get a bit bored of circling the same area. So we circled, and we cirlced, and we circled, and time ticked on, and on, and on, and eventually the wheels came down, and the captain came on the tannoy again saying, 'Ladies and gentlemen, I'm sure you'll be relived to know that we have rectified the problem with the undercarriage and we're now preparing to land ... You may even be as relieved as I am' !!!
As we were leaving the plane the man who'd been sitting beside me asked one of the cabin crew how little fuel we had left. Her reply? 'You don't want to know' !!! :oO Running out of fuel would've been one way to land, I guess, but I'm glad that we managed to avoid getting down that way.
The rest of my travel to Rennes was thankfully uneventful, although there was a lengthy delay in getting onto my connecting flight as Flybe had been going to use the same plane I'd just got off for the next flight. We had to wait while they had another plane flown down from Birmingham instead, and ya know, I'm pleased they did.
Holidays need a bit of excitement ... but maybe not too much excitement.