Three and a half weeks (part one)

I am home.  It is good to be home, but I had such a horrible time and was so poorly that I'm also quite apprehensive about being home.

After writing 'Which way?' on 16th January I went to bed, but I didn't get any sleep because my lungs went steadily downhill.  At 6.30 am I knew that I was going to have to see a doctor, but I only worked this out when I realised that my primary concern shouldn't be that I had clean hair, and I shouldn't have been sitting in the bath with my head lathered in shampoo.  It's a strange state that my mind goes in when my oxygen levels fall and my carbon dioxide levels begin to rise, but at least this time I did recognise it.  However, unlike any other time, I then had a terrible, terrible feeling of foreboding and doom.  Although my peak flow still wasn't desperately low I knew that things were going to be awful.  I was sure that I was going to die.

With the certainty of death in my mind I didn't call an ambulance.  This probably doesn't make any sense to anyone but me, but I wanted to see a friendly face before I died so I called my GP surgery instead of 999.  I phoned at 8.30 am when my peak flow was still 130, and got an emergency appointment for 10 am, but I actually went up (in Noah - new powered wheelchair) at 9.30 am, by which time my peak flow was 100.  The doctor called me in fifteen minutes before my appointment time as I'd pointed out to the (new) receptionist that I couldn't breathe, and by the time I saw Dr Cg my peak flow had dropped to 60.  Ten minutes later my peak flow was unrecordable on a paediatric peak flow meter that begins at 30.

Dr Cg said he could still hear a little air getting in to my lungs, which was very good news, and hasn't always been the case (silent chest), but he wanted me in hospital as soon as possible.  He phoned my usual ward, but there were no beds so I was going to have to go to A&E and he phoned for a blue light ambulance.  So much for the eight/nine minute target time for getting to a blue light call - it took an hour for the paramedics to arrive!  During that time I used my nebuliser numerous times and was on oxygen, but the surgery only had one small bottle of oxygen and it soon ran out (they have since invested in a second cylinder).  Dr Cg called ambulance control several times to enquire about the ambulance, stressing that he had a known severe brittle asthmatic in crisis in his office who needed to get to hospital asap.  They had me down as a standard response!

The ambulance eventually arrived and I was loaded on-board, but was taken to hospital without any urgency.  We ambled through the traffic as though all was well while I gasped for breath in the back.  I have to say that this lack of response from paramedics/the ambulance service is a very rare occurrence indeed, which is probably why it surprised and scared me so much.  However, we did at last arrive at A&E, where the ambulance crew took me through to Monitoring, although I was only there for a matter of minutes before the Sister and doctor whisked me through in to resus.

I was given nebs and oxygen.  They had someone come down from the respiratory ward to put a gripper needle in my portacath and an infusion of aminophylline was started. I continued to deteriorate.  Only the medical student actually listened to my lungs, which shocked me somewhat, and no blood gases were done, but I knew I was getting worse and I knew I was getting tired.  An x-ray was done whilst I was en-route to the Emergency Admissions Unit (EAU), escorted by the resus nurse, which I was told looked 'fluffy' and is a sign of pulmonary oedema.  I presume this is a complication from the asthma, rather than a whole new thing to contend with.

I battled on in EAU, watching the world, seeing the world, feeling the world get 'thinner'.  My head was getting thicker, and as it did, it was like God was rubbing the world out from in front of me with an eraser.  I was being distanced from the world and losing the ability to take part in it.

And then a face - the face of one of the ITU Out-reach Sisters: 'I think she's getting worse.'  I think that I thought, 'she's right,' but actually I didn't know any more.  I didn't know anything other than exhaustion.

Snippets, that's what I remember now.  The junior doctor sitting at the desk with her colleague, almost in tears, saying, 'My patients are dying on me,' and pointing at me, then saying 'There's another one next door.'  The worried face of one of the ITU Out-reach Sisters.  Grabbing the hand of the ITU Out-reach Charge Nurse who I've met several times before and holding on so that I can get some life from him in to me.  Three different ITU consultants coming to assess me.  One of them - a woman I recognise from previous admissions - leaning very close to me: 'We're definitely taking you to Intensive Care, but there aren't any beds at the moment.  We're literally knitting you a bed as we speak.'  I think of a hammock.  Another of the ITU consultants is a short man who I also recognise and I realise he looked after my great friend Carol back in 2005 after she had a massive heart attack at age 42.  Carol died.  Then the EAU consultant who says my temperature is up, and notes that I'm tachypnoeic and tachycardic (breathing fast and have a fast heart rate), at 31 and 150 respectively.  He prescribes immediate IV antibiotics and more hyrdrocortisone (steroid injection).  Blood gases have been done and there's concern because I'm acidotic.  I'm shaking - it's all the salbutamol nebulisers that are doing it, and it's making me even more exhausted.  I can't stop.  I just want to sleep.  I am too tired.  I text my mum and tell her I love her.

All of a sudden I'm being whizzed along the corridor in my bed.  The two ITU Out-reach nurses (Sister and Charge Nurse) are there, the EAU nurse, the porter, the ITU anaesthetist, and lots of people standing back against the wall as I'm charged down the hall.  Faces, lots of faces, and they all look scared.  One looks terrified and then tries to smile at me.  I'm too tired, too poorly, and too afraid to smile back.  And one of the reasons I'm afraid is because the last time I was in ITU in this hospital I had the most horrendous experience that I don't really want to talk about, but it left me with no trust in them at all.

And then we arrive and it's a different ITU.  This is neuro ITU because there are no beds on General ITU, and my mind is eased a little, but I still wonder, wonder, wonder.

I'm taken through in to a room of my own - isolated because of my chronic MRSA positive status. Across the room to the right there's a window in to the main unit.  There's an elderly woman in the bed out there, all bunched up and contorted.  A woman I presume is her daughter is there.  She has brown hair and is wearing a red coat.  I can see the red.  The red is vibrant.  I am still just about in the world.

My room is full, at least it seems full.  Lots of people.  They lie me flat and slide me from one bed on to the other, then sit me up again.  They put the oxygen saturation probe on my finger and the alarm chimes when the machine records a reading of 79% (so I hear them say).  The anaesthetist has a gentle voice, calming, but his words are frightening: 'I really want to intubate you - put you to sleep and put a tube down your throat to breathe for you - but I think if I do, we'll never get you off the ventilator.  Have you had the tight mask before?  I want to try BiPAP because I think that without any ventilatory support you probably have a maximum of half an hour left.'  I nod, but I can't really process this information.  Half an hour left to live.  Half an hour.  Then dead.  I believe him because the world is disappearing.  I believe him because I am suffocating.  I believe him because I'm far too exhausted to keep on breathing.  I believe him.  Half an hour.

The Sister.  The doctor.  The nurse.  The anaesthetist.  They all put the mask on my face and strap it to my head.  Tight.  Tight.  Tight.  It blows air at me.  It blows air in to me.  It sucks air from me.  I still have to work hard, and I am so tired.

I look through the window to my right.  The woman with the brown hair and the red coat is still there.  The contorted woman in the bed is still there.  The machines attached to her are alarming and flashing red lights at the nurses who are standing nearby.  The woman with the brown hair and the red coat smiles in sadness.  The nurses watch.  The contorted woman in the bed dies.  The curtains are drawn around her and the woman with the brown hair and red coat slips out between them.  'I am next,' I think.

I look through the window to my left, and I see the university.  I know where I am in the hospital, in the city.  I know that place over there.  That place over there is the English Department.  That place over there is where I did my MA just last year.  That place over there has people in it who know me.  If that place is over there, then that means I'm still in the world.

I look to my right.  The curtains are open.  The contorted woman has gone.  The bed is empty.

I look to the left.  The English Department is still there.  I am still in the world.

________

I fought on, all through the night, all through the next day, all through the next night, all through the next day.  Several times I almost gave up.  I couldn't do it.  The machine took over, kept me breathing, just about.  W came, she watched me dying.  I wanted to apologise for putting her through this.  I texted my mum and told her I love her.

Eventually my lungs eased up a little - enough to come off the BiPAP for a while.  Eventually, after three days, I was transferred to my usual ward, but I had the BiPAP overnight to make sure that I stayed alive.  Eventually, I felt that maybe I might not be entirely separated from the world.  Eventually, I dared to think that I might live after all.

For one night only

I've been away.  I went for one night to Arnside in Cumbria with W.  The plan was to go away on the Friday, spend the night in the youth hostel, and on the Saturday go to South Lakes Animal Park to meet the giraffe that W sponsored for me for my birthday.  Although the weather wasn't great we had a lovely drive over Hartside Pass, stopping at the top to picnic in the cafe car park, taking in what we could see of the view over to the Lake District.  There's something about W and I that seems to curse the weather, and on almost all of our days out it buckets down with rain, and Friday 8th July was no different, but as ever, we weren't going to let it spoil our fun.  Onwards to Arnside.

We arrived at the youth hostel at around 3pm, but couldn't book in until 5pm when reception would be open again, so we went for a wander down the path from the hostel to the 'prommenade'.  The grandly named promenade that's actually little more than a small pavement, runs along the edge of the Morcambe Bay estuary with its fast-changing tides and sinking sands.  Needless to say, we didn't venture onto the sands, but followed the promenade to the shops on the waterfront, where W bought an ice-cream (actually it was 2, because she had to have one for me as well ;oP ), and I bought a bottle of Peroni for later on as we planned to come back down to the waterfront later to watch the sunset while we had a drink in celebration of W passing her graduate diploma.

Taking a bit of time to relax and get into holiday mode, albeit for only one night, we sat on a damp bench on the 'pier', getting increasingly wet ourselves as the rain clouds rolled in, and we heard thunder rattle off the mountains to the north.  After I'd finished nebulising, we decided that maybe it'd be best to go back to the youth hostel and wait inside for reception to re-open, so off we toddled.  But it wasn't quite as easy as that, because the path up from the promenade to the youth hostel is really quite steep, and my rubbish old lungs aren't that good at 'steep', so I had to take it slowly, and breathlessly, and getting wetter as the rain got heavier.  In the end we both made it up the hill, stumbled out of the rain and waited in the youth hostel kitchen for an hour when reception opened again.

It seemed rather ironic that two severe asthmatics should be allocated a youth hostel room right at the top of the building, but so it was.  However, we did appear to have the seven-bedded room to ourselves, and there were great views on two sides of the estuary, so after making up our beds we rested a while, enjoying the views and taking time to relax some more before dinner.

When we went down to make dinner I decided that I'd take things with me to do in the lounge afterwards so that I wouldn't have to climb all the stairs again.  So after dinner, W and I sat in the lounge chatting, drinking Peroni (although W had champagne), and doing cross-stitch, while it rained rods outside.  It looked as though our plans to watch the sunset by the waterfront weren't going to happen, but then sod it, we decided that we'd go down to the estuary anyway and watch the rain go down instead of the sun.

Back we went down that steep path from the rear of the youth hostel, and along the prom the other way this time, not that we could go very far before the path disappeared into the sand.  We saw a couple of herons flying over the sands a little further out, and one flying from the tree tops, and then we realised that the thunder was getting louder, the storms were getting closer, and perhaps it'd be best to go back and dry out.

The path back to the hostel was more of a challenge this time, I think in part because I was tired, and in part because of the muggy, thundery air.  It was a real struggle, and I had to stop several times whilst W soldiered on ahead.  I could feel my lungs tighten and knew that some serious nebulising was going to have to happen when we got back inside, and indeed, by the time we got into the youth hostel I was wheezing well and knew that I'd be stupid to try to climb the stairs to the dormitory before nebbing, so we went into the lounge instead.  Thankfully it was quiet. 

I'm more than used to using my nebuliser in public, and it doesn't bother me, but I can't say that I like an audience, especially if I'm feeling ill, which I was beginning to confess to myself that I did.  More than anything, though, the overwhelming feeling was one of being pissed off.  I had come away for one night of fun and relaxation, and celebration of W's graduate diploma, and to meet a giraffe.  How dare my lungs play up now.  I was going to neb them into submission.  At least, I was going to try to.

An hour and a bit later, with five nebules of salbutamol, 500mcg of ipratropium, and an extra 25mg prednisolone on top of the 60mg I'd already taken in the morning (my current maintenance dose), I was only very slightly better ... or perhaps that should be, only a little less bad.  I was struggling and I'd run out of options.  W asked if we should go to hospital.  Speaking only a word or two at a time, I replied something along the lines of, 'The problem is that I'm in no state to drive, you're not insured to drive my car, and we don't know where A&E is.'  Then W pointed out that the NHS have their own transport services, and I realised with an explosion of expletives in my head that I was obviously losing all ability to think clearly - a very bad sign - and that I was most likely not going to meet my giraffe, but instead end up in the back of an ambulance.

W went off to reception to get help.  The man sitting on the sofa in the window opposite told me he was a district nurse.  He said he was impressed with how I coped with my illness, without a flicker of panic, but my primary reaction being one of pissed off-ness.  W came back, closely followed by the First Responder Unit (FRU) paramedic, who W had already genned up with my medical history and the course of the evening's events.  The paramedic was lovely, but there was something unconventional about her.  I couldn't work out what it was.  I sat, breathing in her oxygen-driven nebuliser with a pulse oximeter on my finger, while she asked W to phone ambulance control to make sure an ambulance was on its way, when it struck me - although the FRU paramedic had on her shiny, hi-vis, paramedic jacket, underneath that she was wearing pyjamas!  This was rural ambulancing, and she'd obviously been tucked up in bed when the emergency call had come through.  Bless her.

It was only a matter of five minutes or so before the paramedics arrived with an ambulance, into which I was quickly bundled.  They tried to get a cannula in, but my veins are so buggered from all the cannulations over the years (hence my portacath, but you have to be trained to use it) that they didn't have any success.  Instead of IV hydrocortisone, I was given an IM dose instead and then whizzed at great speed on sirens and blue lights along the country roads, and down the M6 to Lancaster, where upon I found myself in the A&E department of the Royal Lancaster Infirmary (RLI).

The doctor I saw in A&E seemed rather scared, not terribly confident, but also reluctant to ask any seniors to get involved.  He did okay, overall, although didn't actually get me any better in the three hours I was under his care.  To be fair, though, he did take on board my treatment protocol from my consultant that I carry with me, and he started the aminophylline infusion before sending me off to the Medical Admissions Unit (MAU).

I have to say that I was impressed with how they dealt with me in MAU, and also with how they treated W.  I was seen quickly by the junior doctor, who soon realised that he was going to need advice from his senior so got the registrar (SpR).  The SpR was a lovely man - ever so gentle - who made sure that W was okay, and asked if she had any questions.  He also recognised that I know my disease better than they do, and that W also knows how things go for me with attacks too, so he regularly checked in with us to see how we thought things were going.  He was also quick to get ITU on the case, and they were quick to assess that I needed BiPAP and transfer to ITU.  I definitely wasn't going to meet my giraffe.

W had work the following day so had to get back to Gateshead.  This meant that she'd first have to find her way from Lancaster back to Arnside, where they youth hostel team would hopefully let her get some sleep before booking out and trying to find her way from Arnside to Newcastle, where she'd left her car outside my flat.  Loathed as she was to leave me, she had to, and it was only a little while after she left that I was transferred to ITU.

The care I received in ITU was great.  They were lovely.  They were on the ball.  The consultant (Dr W) who was on over the weekend happened not only to be an ITU consultant, but also a respiratory consultant, and he was fantastic.  He immediately liaised with my care team here in Newcastle, and I had absolute confidence that I was very capable hands.  I stayed on BiPAP for about thirty six hours, and in ITU for four days before I was well enough to be moved to the respiratory ward, but Dr W said that he was more than happy to keep me under his care whilst I was in the hospital, given how ill I had been and how complicated, difficult and brittle my asthma is.  I think this was something of a relief to the doctors on the resp ward.

I'll blog more about the resp ward in my next post, but I'll leave this here for now.

I made it!

I'm home!!! Yippeeee! (I actually got home on Monday as planned, but just haven’t got around to updating my blog – sorry). Although it was a bit like BA and not all my bags arrived back with me :o( I had job's-worth ambulance driver who came up to the ward with a wheelchair and when told that I had my own got stroppy and sulked to the nurse, 'I'll take this all the way back downstairs then, shall I?' When he came back up he walked into my room, looked at my 6 bags and grumped, 'I can't take all them. Which one do you want to take? I can take one bag of clothes and one bag of medications.' Now I've been going backwards and forwards to this ward for 14 years and never have I come across this 'health and safety rule that's been in force for ten years.' Hmmm *narrows eyes with suspicion of porkies being told* I asked how I was supposed to get my bags home then if he wouldn't take them. 'Get someone to come and pick them up.' Now, the flaw in this is if I had someone to come and pick up my bags then I'd have someone to come and pick up me too. Grumpy Old Sod (GOS) didn't see this logic and insisted that he couldn't take my bags and wouldn't take my bags. I was getting a bit sick of his grumpiness, after all I hadn't done anything wrong, so I asked him if he could be less grumpy and a bit more pleasant. He stropped that he wasn't being grumpy, and my reply was, 'You may not be meaning to be, but that's how you're coming across. I'd really appreciate it if you could be less aggressive.' I don't think he was used to be spoken to quite so directly, because he seemed slightly taken aback. He did continue to say that I'd have to choose just one bag to take with me, but he was a little less obstreperous :o) I decided that I'd have to take my laptop home with me, because it wouldn't be very sensible to leave that in the hospital, even though the rest of my stuff was going to be put in the Charge Nurse's office for the time being. So I took that and I 1 bag (containing 4 smaller bags, but I didn’t tell him that ;oP ) of medication ... and through the art of manipulation I managed to persuade him to allow me one other bag. I kept saying, 'Oh, that bag's got my phone in it. I'll just take my phone out.' 'Oh, it's got my diary in it too. I'll get that from it.' 'Hang on, my keys are in there and so's my purse. I need them.' 'My reading glasses - they're in there as well.' I was ending up with the contents of my rucksack being balanced on my knee, but no bag to hold them in, so he relented and I was allowed to bring the bag too :oD However, the rest of my stuff had to stay at the hospital :o( I had to try to get a friend to get them for me after they’d finished work. And the really annoying thing? When we got downstairs I had a whole Patient Transport Ambulance with about 10 seats and loads of floor space all to myself, so it's not as though we were exactly pushed for space! Grrrr. GOS!

However, I was cheery :o) I’d got home. I had Psychokitty (currently Velcro Psychokitty) purring in my ear. I had my laptop so I could communicate with all of my online friends. I had the satisfaction of knowing that I manipulated a GOS *cackle*

I’ve been enjoying being at home, although it took some time to get the remnants of the ward noise out of my head – you know how it is when you’ve spent a while in a constantly active environment: it can take a while to get used to peace and quiet again. The trauma of the early crisis is raising its ugly head a little more frequently than it was, but I’ve been pushing it away as much as possible while I’ve been getting used to being home. I know I’m going to have to face it head-on soon or it’ll cause more problems in the end ... I don’t want to though.

One of the big distractions I’ve had since coming home has been the wait for my OU course results. They were due out by 7th and in the past results have always come out at least a week before the due date so I’d been anticipating them since before I left hospital. I spent rather a lot of last week obsessively checking my OU student homepage and course results page, and then taking part in a collective panic in the online OU community with others waiting for the same course results. Anyway, we finally got the results through on Thursday (6th) ... I got a distinction (a first)!!! I’m sooooo pleased, and really rather surprised given the hospital admissions I’ve had throughout the course and the fact that I had pneumonia during the whole of the independent study period that was for writing our examinable piece of work. I got 86% for the examinable piece! Yes, it has to be said that I’m surprised and rather proud of myself :oD I now have one more level 3 course to do – Children’s Literature, which I begin in October – and then the level 1 humanities foundation course. After that I’ll have my degree! I know it seems a bit odd to finish my degree with a foundation course, but I need it to get the named degree that I want (BA (hons) Hums Eng Lit), and so far the only foundation course I’ve done is the science one, although I have done other short level 1 courses. Level 1 courses only have a pass or fail, rather than a division of class for a pass, so all I’ll have to do is pass that course and it won’t affect my overall classification of degree. In fact I’ll know what my degree classification is going to be by the end of the Children’s Literature course, but I think that I’m heading for a first unless I severely screw up in Kid’s Lit, because to date I’ve had firsts in all the level 2 and 3 courses that I’ve done :o) Still, there aren’t any guarantees so I’m not counting my chickens just yet. For now though I’m enjoying my current success ... and still not quite believing it ;o)

I am alive!

I am alive. This wasn’t wholly expected last week and I nearly didn’t make it through.

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.

I'm back

Well I lasted about an hour after my last post before I really couldn't do anything except press my community care alarm for help. I did actually phone ward 29 at Freeman (my second home) first, but they had no beds so I knew that I'd have to go to A&E and then end up in the RVI, which isn't my favourite hospital in the world. Consequently I sat at home that little bit longer battling with myself about whether or not to hold on and see if I could last until the next day when ward 29 might have a bed, or if I'd be better off going to A&E all the same. Ultimately my choice was made by my peak flow becoming unrecordable (the lowest on the meter is 60 and I couldn't get that), so I contacted my friend W who was kind of expecting to hear that I was going in, and she met me at A&E. She actually got to A&E before me, because the ambulance took a little longer than usual to get to me and then they spent a bit of time trying to get me breathing a bit better before we set off. It was to no avail though, so I had a rather speedy, blue light trip to A&E, where the medics were all ready and waiting for me. The doc I saw was nice enough, cheery and had a fairly good bedside manner, but he was a bit remiss in forgetting to do any blood gases, and only remembering to get a chest x-ray as the paramedics were waiting to transfer me from A&E at the General to the Emergency Admissions Unit at RVI. Oops. It also wasn't great that he had a medical student try to get venous access in me, as my veins are so damaged and scarred from overuse that even the most experienced doctors have trouble getting access, and any veins I do have left need to be treated very gently so that they don't get damaged too quickly. Needless to say, the medical student wasn't successful, another vein was knacked (not her fault, just lack of experience) and the doc had to step in and give it a go so that they could give me the aminophylline I needed, but couldn't have until venous access was achieved.

After a while I was transferred, again by blue light ambulance, to EAU at RVI, where I was successfully ignored for quite some time (they're too busy there and not terribly organised so that everyone seems to be doing the same thing, meaning that not everything is done). The doc there did do my gases though, which he wasn't terribly impressed with so the anaesthetic team was called and I ended up on the High Dependency Unit again. Thankfully, one of the SpRs was someone I knew very well from her year spent working on ward 29 at Freeman, so I felt safe enough while she was there and knew that she knew what I needed and would give it to me. This is always a concern as I've had one or two experiences of 'doctor knows best' in which doctor didn't know best and I've ended up much more poorly than I would've done if they'd just done what I told them needed to be done. Ach well, such is life.

Sometime around 4.30am/5am things began to settle a little bit, so that by 4pm the following day I was well enough to be transferred to ward 29 at Freeman (they had a bed by this time), although I was still struggling and far from well. The problem was getting an ambulance as the city had been hit by a sudden onslaught of snow, and the hospitals had apparently received telephone calls from the met office giving severe weather warnings! Anyway, an ambulance eventually got through the snow and after a rather slippery journey across the city I arrived at my second home where I eventually managed to get my breath a bit better after several more hours of trying. Then I fell into that ever-welcome, all-consuming sleep that is restorative, yet somehow exhausting ... I'm not sure how that works, but it's how it feels.

There were one or two hairy moments when we lost venous access again, and on one particular occasion there was a real question of how they were going to get it back, because all my veins were either hiding or collapsing. I still needed the aminophylline infusion so it was imperative that a vein be found, and eventually one in my foot made an appearance long enough to be spotted, stabbed and maintained. Feet really don't like have needles in them, and it doesn't make standing easy (I wasn't doing much standing, but a certain amount is required to get onto a commode), but it's better to have a slightly sore foot than to be dead or not far off dead.

I seemed to need the aminophylline for quite a long time this time round, and was on it for about 7 or 8 days. I've had some difficulties with coming off IV aminophylline and onto oral theophylline before so it can be a rather anxious time trying to swap over, but thankfully there weren't any hitches this time and it all went smoothly. I came off the oxygen on Friday morning, and managed to get home yesterday afternoon.

I usually have a day or two in hospital when I feel a little overcome emotionally and have a bit cry. It didn't happen this time, but seems to be catching up with me today. I know it's just the fear of the attack catching up with me, and that I'll be fine tomorrow or the next day, but it puzzles me why it's come later than usual this time. I won't bother analysing it - it's not worth it - but it's curious. Anyway, I'll go to church this evening and I'm sure I'll feel better for seeing people.

It's so good to be home, but however many times I go through this it never stops surprising me just how exhausting it is to suddenly have to do everything for myself again. When I'm in hospital I don't have to do anything, so it's quite easy to think that I'll be perfectly fine when I'm home, which I am, except that even getting up to make a cup of tea is something I haven't had to do for 11 days and it takes more energy than I anticipate. I'll get my energy back eventually, but for now I'm just enjoying being home, being with the cat and having my own things around me again.

In the post

After my admission in November I mentioned my wanting to write to the paramedics who take care of me on my way to A&E to thank them. I wasn't ever successful in getting the names from the ambulance service of the specific paramedics who came to my rescue, so at Christmas time I decided to send the North East Ambulance Service , as a whole, a Christmas card. In the card I thanked them for the wonderful and vital work that they do, and said that I hoped they knew how appreciated they are, even though they come across many who don't appreciate them. I told them that I am a regular user of the NEAS for my brittle asthma, and thanked them for helping to keep me alive thus far. I knew that it was unlikely that they'd have a peaceful new year, but I wished them one anyway, and said that I hoped they didn't get too many calls from drunks wanting a quick lift home and nothing wrong with them other than the consumption of too much alcohol - i.e. misuse of the service. There were one or two other things in my note to them too, and I can't remember any of my exact wording. I am of the belief that it's as important, if not more important, to acknowledge positive experience as well as the negative. Expressed appreciation can go a long way to bolster flagging morale. Maybe you can look out for opportunities to take this stance too - nothing is too little to be appreciated.

Anyway, much to my surprise, I received a letter in the post last week from the NEAS. This is what it says:

Dear Ms G

Thank you for your Christmas card in which you extend your thanks and appreciation to the staff of the North East Ambulance Service. Thank you for the kind words you say about the ambulance staff, I know they will appreciate your sentiments.

Can I also take this opportunity to thank you for taking the time to contact us. It is always very pleasing to receive such appreciations, as I am sure you are aware that we strive to provide the best possible service, however it is particularly reassuring to have that confirmed at first hand from someone with recent experience.

Yours sincerely

Paul Liversidge
DIRECTOR OF AMBULANCE OPERATIONS

It's ever so nice of them to write back to me, but I also find it quite sad that they obviously get so few letters of appreciation that they feel compelled to write back thanking me for mine ... a thank you for a thank you. Don't you think it says something about society and our taking the ambulance service (and I guess the fire service and police as well) for granted, that when one letter of thanks is sent, the Director of Ambulance Operations makes the time to reciprocate with his own letter of thanks?

So with this in mind, I set you all a task this week: Show your appreciation to someone for something they have done, something they have given you, or a service they provide. All the better if you do this more than once in the week. I'd love to hear what you do for this so feel free to leave a comment.

With thanks

Less than an hour after writing my last post I was in dire straits and had the paramedics coming for me. The speed with which I deteriorated was startling, and within 10 minutes my peak flow dropped from 100 to unrecordable. I'd had a couple of friends on stand-by for a few days for when I needed to go in, so I called them and even though one of them was in bed asleep they both came round straight away and were here just before the paramedics, who themselves arrived very quickly. My friends N and J hadn't seen me in quite that state before so I think they were a little shocked, as were the paramedics, who I have to say were brilliant, got me straight into the ambulance where they tried to cannulate me, but with my veins being so overused they didn't actually manage to get one in, but they did give me subcut adrenaline in the hope that it'd help. Unfortunately it didn't help and I think I was actually a little worse by the time we got to the hospital. N sat in the front of ambulance with one of the paramedics on the way to the hospital and was told that the crew had been on all weekend, and although it was by then Monday, I was their first call who wasn't a drunk! Apparently they said that my call had made them feel like they'd done something worthwhile and reminded them what the job was all about. How awful that paramedics can be made to feel like they're not worthwhile and are used as a taxi service for people with nothing wrong with them other than the consumption of too much alcohol. I am so very thankful that they do the amazing work that they do.

When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.

I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.

So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.

So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.

Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.

I'm thankful that I survived again, however tough it was.

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)