Departed

Oh, it's so long since I posted, but given all that was going on at the time of my last post, perhaps you understand some of why I haven't blogged.

As you have probably guessed (or perhaps hoped), I have been discharged from hospital since I last posted.  I had a long admission with a very, very slow weaning of the aminophylline, which went smoothly, but given the upset of my father's death shortly after I was moved from ITU to the ward, we all wanted to be sure that my lungs were going to cope with the reduction in IV and its replacement with the tablets.

Asthma is most definitely a physical illness, but like many illnesses, it can be affected by emotional upset and distress.  This doesn't mean that it's psychosomatic or 'all in the mind', just that physical and emotional well-being is intertwined, and asthma can become worse with both repressed emotion or expressed emotion.  Laughing or crying can both induce an asthma attack in some, including me, which seems most unfair.  When I was in hospital this last time, and out of ITU, I was trying to recover from a terrible asthma attack whilst also trying to find a way to grieve for my father without undoing the healing that my lungs had thus far done.  One of the junior doctors came to see me one weekend evening, still doing her ward round.  I poured out some of my upset that most of the time I was trapped with on my own, and as I forced back some of the tears she said, 'There's no harm in crying and letting some of it out.'  I replied that I wanted to and needed to, but the harm might be that it could set off the asthma again.  She held my hand, which was enough to tell me that she understood that dilemma and that fear, but didn't have the words to make it right.  I'm glad that she didn't try to make it right.  Through a series of comments and observations on both our parts I established that she was a Christian, and I asked if she would pray for me.  She told me that as a doctor she has to be careful about not imposing her beliefs on others, but as I had asked then of course she would pray, and she did.  This lovely young doctor sat with me in my hospital room, with my upset and distress very much on show, and prayed, and it was exactly the right 'medicine' for me that evening.

After my week in the Intensive Care Unit at RVI, I had another three weeks on the ward at the Freeman Hospital.  It was a difficult discharge, not so much because of the asthma, but because I felt like I'd had everything knocked out of me - physically and emotionally.  The one thing I was holding on for was cuddles with Isobel Artemis, my gorgeous kitten.  I had actually seen her once during my admission when a collaboration between my friend J, who was looking after Isobel, and N, the hospital chaplain, meant that J was able to bring Isobel to the hospital chapel (with the permission of Infection Control), and N was able to trundle me down there from the ward in a wheelchair.

I was so looking forward to seeing Isobel Artemis again and giving her masses of cuddles because I'd missed her so much ... but when I got home she wasn't there.  J said that Isobel hadn't been at home when she'd come in to feed her that morning, but we waited in hope that Isobel would return.  Isobel hasn't come home.  She's still missing almost eight weeks later.  I have been so lost without her and every day I wish she would saunter in through the cat flap as though she doesn't know what all the fuss has been about, but every day there is nothing.  I have registered her as missing with the microchip company so that we will be reunited if/when she's taken to a vets or shelter that scans for microchips.  I have registered her as missing with the company Animal Search UK who have put her details on her website and Facebook page.  They've also produced this poster.

 I've put up forty five of these all around the area, plus dropped about 2000 similar flyers through letterboxes in the area.  I've been out calling her at all different times of day (and night).  I've emptied the vacuum cleaner out in the back yard and tied a piece of my clothing to the back fence as both these things carry my and her scent so are meant to attract her home if she's anywhere nearby.  I've contacted the dog and cat shelter, and put her details on every appropriate Facebook page that covers the area.  I've contacted several vets practices in the area.  I've had a few calls from Animal Search UK with possible sightings that I've followed up immediately, but they've turned out to be other cats or nothing at all.  Nothing.  It's like she's just vanished.  The vet receptionists think that, given all that I've done to try to find her and there's been so little response, she's most likely been stolen.  I can only hope that she is eventually scanned for a microchip and discovered to be missing from me.  I long to have her home.

I will never give up on getting my precious Isobel Artemis home unless I get a call to say that she's been found dead, but I'm not good at having no cat in my life.  I'm going to get another kitten.  J has a grown up nephew who has cat who had kittens thirteen days ago.  I would like another little girl kitten if possible, and in a couple of weeks J's nephew and I are going to take the four kittens in Daisy cat's litter to the vet to be sexed.  One of the kittens is a little calico so is almost certainly female, the other three are tabbies like Daisy, and I'm kind of hoping that one of them is female too as I think I'd quite like a tabby.  Anyway, I went to meet all four of them when they were just two days old.

I can't tell from the photos which is which, but I do know that all four of them appear in these photos.  Let me know if you can tell the difference between them.  They'll be much easier to tell apart the next time I see them at four weeks old, and I'll hopefully be able to see more of their personalities too.

So, the other departure, the one I've been avoiding saying much about.  Dad.  We had to wait a month after Dad had died until we could have his funeral, in part because of a backlog at the crematorium.  It was a difficult day, and actually I don't want to say very much about it ... Although I will say that after the funeral and the wake I had a really good family time with my mum, step-dad, my brother M and his family, and my brother C and his family.  M and family were staying in an apartment hotel (a hotel comprised of little apartments, with self-catering facilities as well as food/drink that can be ordered and brought to the apartments) that we all congregated at both between the crematorium and wake and after the wake.  The children were able to run around inside and play together, which they all needed as there isn't much scope for that at a funeral.  The rest of us sat and chatted, and remembered Dad, and then we ate and talked about 'normal' things too - things that weren't about death and dying, or the people we've struggled with through the whole process, or the difficult aspects of Dad that were ignored in the wake remembrances.  We enjoyed being together and being a family, and you know, since then we've perhaps had more contact with each other than we had before.  Maybe it won't last, but at the moment it is good, and that is the positive that's come out of Dad's death.

Longer than expected

When I wrote my last post I fully intended to write again very soon, but for one reason or another I haven't been able to.  I've written my next post in my head several times, with it being different each time because of what's been going on at the time, but because of that I've also rather lost track of how long it is since I actually managed to post anything.  At last I'm here, albeit two and a half months since my last posting.

So what's been going on for me?  Well, it's been the summer and traditionally a time when folk go on holiday.  I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week.  I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's.  I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots.  She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant.  She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'.  I am completely besotted with Isobel and she's giving me so much pleasure and delight.

At the middle of July/beginning of August I spent two weeks in hospital with my asthma.  I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday.  I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August.  In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North.  I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill.  I couldn't breathe and my chest felt incredibly tight.  I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out.  I knew that if I passed out then I would die.  I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness.  Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease.  For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.'  It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay?  Should I go to hospital?  Would I be alright if I went home?

When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done.  I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day.  In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.

It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way.  Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink.  And when I got home I was exhausted.

I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move.  I tried to wake up, but I couldn't.  My head didn't feel right.  In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight.  I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep.  I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall.  I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in.  I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused.  I said that I wasn't, that I was just tired, but actually I think I was confused.  The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.

I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again.  My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday.  When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery.  Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery.  The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.

At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me.  My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me.  I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter.  The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly.  It all went pear-shaped and I ended up back on it very soon after it'd first come down.  This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process.  Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.

I was discharged two weeks after being admitted.  The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell.  These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.

Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes.  I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.

There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you.  Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather.  So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.

Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

Not just the wrong pair of trousers

This happened the week before last, during this admission.  I've changed the doctors' names as I've written it for my book, but I thought I'd share it with you as it is all the same.  It may undergo some editing before it makes it into the book, but the facts will remain the same.  I hope you enjoy it.

Not Just The Wrong Pair of Trousers

Dr Samson arrived with his registrar, Peter, and the junior doctor, Yas. The trio arranged themselves around my bed and observed the wheezing form that lay before them.

‘Yas,’ began Dr Samson, ‘seeing as you’re the only one with a stethoscope, can I borrow it, please?’

Yas looked at her seniors and stuck her pen between her teeth while she juggled my bulging volume of notes into her left hand. With her right, she unravelled her stethoscope from where it hung draped around her neck, disentangling it from the plastic apron on which it kept getting snagged. Removing the pen from her mouth, and handing her stethoscope to Dr Samson, she tutted and said, ‘Really, a respiratory doctor coming to work without his stethoscope is like coming to work without your trousers!’

I spluttered a wheezy laugh and, closing my eyes, pinched the bridge of my nose with my thumb and forefinger. With a slow shake of my head I said, ‘You know, I really shouldn’t have that image in my head,’ which triggered giggles in Yas and feet-shuffling from Peter.

Dr Samson abandoned the beginnings of an excuse, instead saying, ‘I suppose that as I’m borrowing your stethoscope I can’t really tell you off,’ but any authority he may have had with this was lost by the increasing redness to his face.

Unable to shake from my mind the image of my asthma consultant arriving in my hospital room in his underwear, I could only try to stifle resurging giggles while he listened to my lungs through my back. But with Yas standing at the end of the bed, it was all too easy to catch her eye and for the ridiculousness of the image to become infectious.

The disastrous consultation eventually came to an end, but with me and Yas caught up in school-girl giggles, Peter not knowing what to do with himself, and Dr Samson slightly flustered and extremely red-faced.

Dr Samson and Yas returned on another ward round visit two days later, the joke having walked right back in the room with them on their arrival. No reference was made to it throughout the consultation until the end, when Dr Samson and Yas were removing their gloves and aprons. I couldn’t resist but acknowledge Dr Samson’s remembrance of his stethoscope that morning by passing the comment, ‘I see you came to work with your trousers this morning.’

The colour shot up Dr Samson’s face and Yas spat out the laughter that had been bubbling within. Dr Samson shuffled out into the corridor with as much dignity as he could muster, whilst Yas left the room bent double and with the two of us giving glances of collusion.

As predicted

I didn't last very long at home after my last post, and as I thought I might, I ended up back on Ward 29 the following day.  I'm still on the ward.  I struggled on at home for as long as I could, but the point at which I decided enough was enough was when I thought that I'd just have a rest from what I was doing and sit on the sofa for a bit while I caught my breath, only to realise that all I was in fact doing was sitting on the sofa doing nothing but thinking, 'Gosh, this is hard work.'  I phoned my vicar to see if he knew of anyone who might be able to take me to the Freeman, and then phoned J on the ward.  Thankfully J had a bed for me and the vicar easily managed to find someone to bring me up to the hospital as lots of people were gathered praying for me.

I've been pretty ill.  It turned out that I'd picked up streptococcus pneumonia just before I was discharged from my previous admission, and of course anything that effects the lungs is liable to set off my asthma.  I've been on the aminophylline infusion and the oxygen since I came in, and I was on IV antibiotics for several days before being changed onto orals.  These were stopped yesterday as I have been getting bad tummy pains, which have most likely been caused by the antibiotics, and indeed the cramps have lessened somewhat since stopping them.  I'm still getting quite uncomfortable at times, and needing pain killers, but the pain certainly isn't as bad as it was yesterday or the day before.

We tried reducing the aminophylline on Friday, which I thought was a tad premature as I still didn't feel steady, but the consultant was eager to give it a go.  We did.  It didn't work.  After a few hours at a reduced dose my chest was very tight and wheezy again and I felt like I was beginning to really struggle once more.  I was already totally exhausted as I haven't been able to have my usual big sleep this time, I think because the chest tightness and wheeze has been so long and protracted, and I was coughing so much too at the beginning of the admission.  Anyway, the infusion was put back to full rate on Friday evening and stayed there till today.  It's been reduced again this afternoon, and although I can feel a difference I don't feel dreadful so that's improvement I guess.  I'm nervous though, and getting through the night without 'events' will be the big test.

I hadn't had time between admissions to deflate from the horrid water retention, and of course it's only got worse with this admission.  However, this time I have been put on big doses of furosemide, which has helped somewhat although I'm still whale-like and hating that.  Speaking of whales, I've become even more like one as I've developed a barnacle problem in my mouth.  Well, the doctors call it oral thrush, but I'm convinced it's barnacles ;o)

Did I tell you that last time I was in I had a dream that I had to pour custard into my ears?  In this dream it was very important that I pour custard in my ears and it was very important that I do it correctly.  In my dream I succeeded, and it seems that the dream was almost prophetic!  Not that I've actually gone and poured custard in my ears, but I did go almost completely deaf in my right ear and partially deaf in my left ear, and it felt like they were full of custard.  It turns out that streptococcus pneumonia bugs can cause ear infections as well as lung infections so the deafness and creaking in my ears has probably been that, but I remain resolute that I have custard in my ears and barnacles in my mouth ;o)  Actually, the custard is dissipating now and I can hear better again, and the barnacles have been helped by a course of fluconazole, but that finished today and my mouth isn't quite better :o(

All in all it's been a horrible time, and for all that I'm much better now than I was when I came in, it's felt like a terribly long haul with one thing after another.  I'm also completely whacked.  This is the first time I've had the computer out and it's totally exhausting.  The nurses have said it'll probably take me six to eight weeks to get my full strength back ... just in time for another admission then, most likely :o(  Still, I'm not thinking about that.  What's important at the moment is to get better from this round of fight, and then to get home.  How I long to be home, and stay there!

Progressing

I'm nine days down the line of admission and I'm progressing well, surprisingly well.  I felt rough with both the asthma and the 'flu at the beginning of the admission, but things have been going okay, and rather amazingly I'm hoping to get home tomorrow!  It's a long while since I had an admission of under a fortnight, so to be getting home on day ten will be really quite something, though I know that I'll have to be sensible and take things easy when I get out of here.  That said, I don't think it's going to be too difficult to take things easy as I'm still very tired, which is probably a combination of the asthma and the 'flu virus.  As you most likely know, I quite often launch myself right back into life with little time for proper rest and recuperation, but this time I'll have to be sure that I do as I'm due back at university a week on Tuesday and it's going to be a heavy semester.  I have two-thirds of a two year MA to do in two-thirds of one academic year...

For all that this admission hasn't been too bad in the scheme of things, it'll be a relief to get home.  I know that I will have to pace myself, and that I will probably keep tiring easily for a while yet, but I'm definitely emotionally ready to get back to my own place.  During the past couple of days I've felt the beginnings of the hodpits lurking within, not in a major way, but enough to feel their niggle every so often.

Yesterday I had a bit of a taster of how exhausting getting back into life this week is going to be as I had an appointment at the RVI for follow-up with the plastic surgeon after my Carpal Tunnel Syndrome op six weeks ago.  Obviously I had to go to the appointment from here, which wasn't as straight forward as it ought to have been as Patient Transport Services (PTS) were pretty rubbish.  My appointment at the RVI was for 9.45am so PTS said I needed to be read for pick up from the ward at the Freeman anytime from 8.15am.  I'm not a morning person by any stretch of the imagination so 8.15am often feels like the middle of the night, especially when I've been poorly.  However, the nurse came and woke me at 7.30am and I was up, washed, dressed, and ready for pick up by 8.15am as requested, but PTS didn't arrive until 9.55am - ten minutes after my appointment at the other hospital.  Thankfully, the nurse here phoned through to the clinic and told them I was going to be late, and said that she'd call them again when I'd left the ward, but I'm not sure that would actually have been an awful lot of use to the clinic as PTS then went and picked up two other patients before finally setting off for the RVI.  They then dropped off one of these other patients before they took me to the clinic I was due at, arriving for my 9.45am appointment at 10.40am!  I was not impressed at all.  However, I was thankful that I was still seen in clinic as they could easily have refused.  In the end I was only in the consulting room with the surgeon for all of five minutes max, during which time he assessed the result of the surgery I've had, was pleased with progress, said I could drive again without problem, and told me I should have the other hand done now.  That'll be within the next six weeks, but last time I was told this I ended up having the op eleven days later, so it could be almost anytime from now.  I know the op needs to be done, so it's better to get it out of the way, I suppose, but I feel a little shell-shocked if I'm honest.  No time for rest or a break from hospitals.  I suspect it's contributed to the hodpits niggles.  I hope I get at least a few days of relative normality at home before I have the surgery...

Now, on a completely different subject, one of the meds I take is a steroid nasal spray.  For some reason (probably financial) the pharmacy here have this time sent up nasal drops instead of a spray.  It's the same medication, just a different method of administering the drug.  The trouble with drops and noses, though, is that drops go down and noses go up, so I was a little perplexed as to how I was supposed to get the drops into my nose.  I came up with the radical idea of reading the patient information leaflet that comes with the drops, and low and behold there were instructions!  Much to my amusement the instructions suggest that the patient stand on their head and then maintain their upside position for at least one minute!  I'm in a room of my own so I haven't been able to see if others have been prescribed these drops, and if so whether or not they're standing on their head, but I haven't been aware of any other patients assuming a general upside down position for at least a minute, although one of the nurses did say that she'd been given these drops recently too and she'd had to get help from some of her colleagues to help her with the upsidedownness.  The blasted nasal drops don't even come with a cushion, which you'd think they ought to if the manufacturers are suggesting those who use them stand on their head.  What's more, I can tell you from experience that assuming an upside down position rather impedes breathing ability ... and then of course there's the POTS, which certainly doesn't agree with being upside down.  I have been rebellious.  Oh, no fear, I've been taking the meds, but I haven't been standing on my head.  No, I've been much more refined and have, instead, been tilting my head all the way back before squeezing the drops into my nose.  It seems to get them far enough back as they drop all the way down into my throat ... which is perhaps a little too far, so maybe they won't be doing the job...  One thing is for sure, I won't be asking my GP to change my regular prescription, but at least the idea of a ward full of folk who can't breathe at the best of times now having to stand on their heads to administer their medication made me smile :o)

Anyone for a nasal drop?

Not as planned

I was hoping to post an update last Thursday, but it didn't happen because I had a visitor just as I was about to set to task.  So then I determined that I'd do it on Friday instead, but nothing went to plan on Friday and after a week of struggling on at home with what turned out to be 'flu, I ended up in hospital.

As I say, the lurgies I've had weren't 'just a cold', but 'flu, and for all the wishing in the world things didn't settle.  I was reluctant to go to my GP partly because I know there's nothing a GP can do for viruses so there's no point in going to the surgery and infecting everyone there, and partly because I was pretty sure that the effort it would take to get to the surgery (even in Taz) would set the lungs off into a catastrophic state.

 Late last Thursday night I was a little anxious that things weren't improving (in fact I got rather cyanosed on moving from the sofa to the bed - a very bad sign), and I was very aware that the weekend was fast approaching and that medical services reduce significantly over the weekend.  I compromised with myself and decided to phone the GP surgery in the morning and get a telephone consultation with the doctor.  I somehow managed to wake myself up with the alarm at 8.30am on Friday and set about the task of getting through to the surgery, but as soon as the lines open they become almost permanently engaged, so it took me 7 minutes to get through, by which time the receptionist told me that there weren't any telephone consult appointments left for that day.  She went on to say that there were, however, lots of contact appointments at the surgery, so there'd be no problem if I could get up there.  I explained my predicament of not being horrendously short of breath at that precise moment (although she interjected saying she thought I did actually sound very breathless), but I was concerned that getting myself to the surgery would set my lungs off big time.  'Oh,' she said.  'In that case, all I can do is to get the on-call doctor to phone you up in the next 20 to 30 minutes.'  Now I don't know about you, but to me that sounds rather like a telephone consultation, which is what I'd originally asked for... 'Yes, that's absolutely fine.  I'll keep the phone by me.'

The doc phoned back within twenty minutes, and I immediately knew that I'm far too frequent a customer at the surgery as she greeted me with, 'Hello, Becky?  It' M.  Dr P.'  First name terms.  She didn't even call me Rebecca, as on my notes, but Becky because she knows me so well (and I always sign off cards, letters, etc that I send them as Becky, so they know that's what I like to be called).  Anyway, the conversation was relatively brief.  Dr P could tell that I wasn't great, although not in crisis, and she said that one of the things that concerned her was not just that I'd been struggling on at home on my own with 'flu for the past week, but also that I was phoning them for advice, which I hardly ever do.  That, she said, meant that I was concerned, which in turn made her concerned.  I saw her point.  She fairly quickly decided that I ought to go to hospital, and when I suggested that the exertion of this might set things off, she came back to me with, 'In which case you need to be there, don't you think?'  Again, she had a point.  Dr P tried to placate me with the suggestion that I may just be kept in hospital for a few hours while they observe me, but I knew that once I was in the hands of the medics I wouldn't be going home any time soon.

'So do you want me to call you an ambulance then?' Dr P asked.
'No, not really,' I replied, with the edge of a joke in a my voice.  'Could you maybe see if Ward 29 have a bed first?'
'Okay.  I'll phone the ward, speak to them there, then call you back.'
'Alright.'
'And Becky?' She called down the phone just as I was about to hang up
'Yes?'
'Pack a bag, because you're going to hospital whatever.'
'Oh. Okay.'  So disappointed, but I knew she was right.  I knew I needed to be going to there really, even if I didn't want to.

I didn't actually need to pack a bag as I keep one packed and stocked all the time, but I did need to think about brushing my teeth, getting meds together to take with me, getting the last few 'luxuries' such as mobile, kindle and book, letting my mum and W know, and then maybe changing from pyjamas to clothes.  I managed a few of those things before the doc called back to say that I was in luck, Ward 29 had a bed, she'd called a 20 minute ambulance, and she hoped it would be an easy and short admission.  She is very lovely, and most importantly very good.

So here I am on Ward 29.  To be honest I've felt like something of a fraud because I wasn't in my usual state of total desperation when I arrived, but I actually don't think I would have made it through the weekend without going splat, and I have been on the aminophylline infusion ever since I arrived.  As one of my friends who's a GP said when she came to visit me, 'You're not a fraud just because you haven't ended up in ITU this time.  Most people don't go to Intensive Care when they come into hospital.'  Ah, yes, good point, S, good point.  So I'm not a fraud, and I know it really, and of course I wouldn't have been kept in or put on the aminophylline if I were, but it makes me think about how used I have become to being desperately ill when I usually arrive in hospital...

I am mending.  I'm still on the infusion at the moment, but we're hoping to try to get that down in the next couple of days.  My temperature has also been much more settled today, and whilst I'm still a bit snuffly, I'm doing okay.  This might turn out to be a shortish admission for me :o)  though of course I'm saying that ever so quietly so that my lungs don't hear and don't go getting any ideas about acting up.

As seems to have become the way of things during admissions over the past couple of years, I have once again swelled up immensely with fluid retention.  Aminophylline is meant to have mild diuretic properties, but it appears to have had the opposite effect with me ever since the POTS started.  I am currently gargantuan.  I am whale-like, and the only relief is that, despite my marine animal appearance, I don't yet appear to have developed a barnacle problem.

Grumpy pants

When the cat gets stroppy, which happens quite a lot with Psycho Kitty, Zach, I often affectionately call him Mr Grumpy Pants.  The past couple of days I've been doing the typical 'pets reflecting their owners' thing and have been Miss Grumpy Pants.  I'm just sick of being in hospital now, and every little thing has been niggling me and making me tetchy.  Poor W has got the brunt of it, which she really doesn't deserve, but more than that, I just feel naff when I'm grumpy.  I get fed up with myself for being grumpy, and of course that makes me even more grumpy.  Okay, so there's plenty of valid reason for me to be fed up, but I don't like feeling negative and miserable, and stroppy.  I let a smidgen of it out much more appropriately earlier this evening by having a couple of dribbly tears on one of the nurses, but nothing very much.  They're so lovely here on Ward 29 - let me feel however I feel, are genuinely interested in whatever those feelings are, and know exactly how to handle each individual occasion.  So this evening I got a hug, a glass of milk, and chat time.

A little earlier I was talking with one of the other nurses about my desire (and need) to get home.  I'd told the junior doctor I saw yesterday that I was hoping to get home at the end of the week, but she'd been very non-committal because apparently my white cell count is still a little high, indicating there's some residual infection.  I've been so poorly this time, and had such a major set-back after an initial improvement, that the nurse today thought that maybe the doctors would be a little more cautious than usual about sending me home.  None of us want me to have another flare-up of infection and bounce right back, but personally I think I'll be fine to be going home as I'm not spiking any temps or anything.

In a bid to make headway home I came off the oxygen late this morning and have been pottering around the room a bit more than I had.  I've had one or two periods of puffiness, but nothing major and nothing that didn't settle easily enough.  Although I really want to get home as soon as possible now, I've resigned myself to being here tomorrow, but I'm hopeful for Saturday.  The nurse I spoke to about it this aftenoon thought that might be realistic enough, and hopefully the docs will think similarly when I see them in the morning.  I should be seeing the registrar and the consultant (not my consultant as he's away this week, but one of the others who I know very well), and they're usually guided by how ready I feel for home, so I'm gunning for discharge on Saturday - just in time for fireworks :o) although I won't mention that to the docs ;oP

Don't worry, I won't go pushing to get home if the doctors really don't think I'm up to it, but my white count wasn't massively high, and I'd go to my GP at the first sign of any reappearance of infection.  I do need to get home now though.  Even if I get home on Saturday, it'll be almost four weeks since I was admitted, and there's only so much getting better one can do in hospital.  A certain amount of recovery comes when you immerse yourself back into life, and anyway, hospitals are fantastic places for picking up more infections, even simple ones like the cold I got that caused the chest infection and set-back I had the other week.

Yes, I need to get home.  I need my own space and own surroundings, and I need my cat.  I need to be able to process all that's happened, get my head around how poorly I've been (the nurse I was talking to this evening said that she's been really scared for me this time, and have scared all the doctors too), and also have the opportunity to grieve for a friend who died last week.  Rachy was someone I'd initially met through the discussion boards on the Asthma UK website, but had got to know her well through another group and then through text contact.  We may never have met in person, but we were still friends, and I'm missing her.  I won't say anything more about that for now, because it's all a bit too raw and unprocessed, but I thought I'd let you know that it's something going on for me, and is contributing to my upset and general grumpiness.

Now I should probably try to sleep.  I haven't slept well for several nights with my mind working overtime, even though I've been really tired.  It won't be any good me trying to persuade the SpR and the consultant that I'm okay to go home if I'm both grumpy and looking exhuasted.

Three weeks and counting

I've made it back to you at last.  I'm still in hospital, and have been here for over three weeks now, but I do seem to be making much more steady progress now and I can see the possibility of discharge.

As you know, I had a slow decline this time round, and I was getting really tired with it, but things escalated quite rapidly on 10th October.  In the early afternoon I emailed the Charge Nurse (J) on Ward 29 at Freeman to say that I thought I'd be heading their way soon, and a couple of hours later I was in resus in A&E at RVI after phoning Ward 29 and finding that they had no beds.  As it turned out I wouldn't have lasted long on Ward 29 anyway as I went from resus in A&E to HDU in the Critical Care Unit at RVI, and was there from the Monday until the Friday.

I had a fairly horrendous time in HDU at RVI, which I can't say a whole lot about on here as those involved are being disciplined (albeit unofficially), but one night was particularly awful and caused me a great deal of stress.  I'm sure the stress has contributed at least a bit to my slower recovery, although things were slow anyway, most likely because the decline was slow.

So I made it to Ward 29 at Freeman on the afternoon of Friday 14th October, and although I was still on the aminophylline infusion I was kind of doing okay.  Saying that, though, something didn't feel right ... it didn't feel like a stable improvement, and although I was able to get off the aminophylline by the Tuesday (I think) I wasn't convinced of the improvement, and actually felt like I was getting a cold.

I was right.  I did get a cold and the cold rapidly headed south to my lungs, giving me a none-too-pleasant chest infection.  I had a barking cough, I was exhausted, I wasn't sleeping well, I was wheezing more and more, and by the next Friday I was in HDU in Freeman.  Thankfully I only had 24 hours down there and was able to come back to the ward, but I was far from well and still very wheezy.  It's taken a heck of a long time for the wheeze to settle and to begin to feel like I'm mending, but at last I think I'm getting there.

For the second time this admission the aminophylline is down - as of yesterday - and so far I'm doing okay.  I was a bit tighter again this morning, and ever so tired, but things settled after nebs and then I slept the morning away and was woken for lunch.  I'm still very tired, but it's been a long haul with a lot of stress and upset, and a big set-back in the middle that itself made me want to cry.  The trouble is that crying can make my lungs tighter so I have to push the upset and stress to one side until it's safe to express it, but then I think others can be confused when it does get expressed as there may not be any particularly apparent reason for the tears when they come.  For the most part the tears still haven't come yet for this admission, and I have a feeling that they won't until I get home.  There's almost too much to process while I'm here, even though I have my own room (the benefit of being MRSA positive) ... I'm kind of numb most of the time ... just getting on with it ... almost afraid of touching the miserable bits, but I know that I will have to in the end.

I know that even what I'm writing here is probably coming across as emotionally detached.  I also know that it wouldn't be so detached if I could write about what happened at the RVI, but I can't.  Though I will say that what happened has left me feeling like I'd rather take the risk in the future of waiting at home for Ward 29 to have a bed, than end up back in ITU/HDU at RVI, even if that means I don't survive.  However, the RVI ITU/HDU matron is on the case, has been as reassuring as she can be, and has told me that if/when I'm in her unit again I'm to have the staff tell her that I'm there.  W has also said that if at all possible (i.e. if she's not working the following day), she will not leave me alone in the unit again.  I think that's probably all I can say about it.  Sorry to be evasive, but I feel I should be at least a little cautious about how much I say.

The next step is to get off the oxygen.  It shouldn't be too difficult as I'm only on a trickle of 2 litres now, and as I've said, my progress does feel much steadier now.  I've even been out for a proper trundle in the park today, with Dad pushing the wheelchair.

Nobody has yet mentioned home, but providing things continue as they are then I'm anticipating discharge by the end of the week, maybe Friday.  In my head it's Friday, anyway, though I haven't mooted the idea with anyone yet either.  I might do tomorrow.  Actually, these days the medics tend to leave it to me to tell them when I'm ready for discharge, and at the moment I think Friday is probably realistic.  Also, I have to get home by Saturday because the cat is terrified by fireworks so I need to get home to comfort him and most likely spend a large proportion of Saturday evening with his head stuck in my armpit as he tries to hide from the noise >^..^<  Bless him.  I miss him so much and can't wait to get home to him.  Here's hoping Friday is doable.

Slow progress

Not long after my last post I was very ill. The allergy progressed so that I was very itchy, bright red, nauseous, vomitting, wheezing, and beginning to swell. I took lots of antihistamines, which reduced the swelling and lessened the itching, but my breathing continued to deteriorate. I texted W to say what was happening, and she came and took me to A&E. At my first time of texting W I hadn't been sure whether or not I'd need to go to hospital, but in the end there was no doubt about it, and although we ought really to have called an ambulance W whizzed me up to A&E herself. Things were bad, but they weren't dreadfully dreadful, although I did get sent straight through for immediate treatment without any waiting around, and then I found myself in resus. I spent the night in the monitoring bay of the Emergency Admissions Unit (EAU) unfortunately getting worse, and increasingly tired, but somewhat overlooked as the place was busy with too few staff and several poorly patients. The disadvantage of being somewhat used to severe breathing difficulties is that I am now able to keep relatively calm through it all, which may seem like a good thing, and is to a degree, except that it can give a false impression of how ill I actually am. The gentleman in the bed next to me was quite distressed with his own breathing problems through the night so the staff concentrated on him, which is good, except that it menat that my needs weren't observed until much later. By the morning it was clear that I was in quite a desperate situation and I ended up in ITU on BiPAP for 22 hours. W was with me a lot of the time, despite having work to go to and a huge essay to complete for the last of her graduate diploma. And she told me that when she was leaving ITU for work at one point the sister pulled her aside and said that although I was a doing a little better I still may not survive. This doesn't give me any information I didn't already know for myself, nor W, but when it's said it confirms the truth and is hard-hitting. I'd much rather know these things for sure though - be told the whole truth - so I respect their honesty, and I think W does too. It's hard though. It's always hard. Thankfully, I did make it through and eventually I made it to the respiratory ward, although my usual ward 29 at Freeman didn't immediately have any beds so I had to go to the RVI resp ward. I don't like it much there. Maybe it's partly because it's not where I'm used to and I don't know the staff, but the whole atmosphere feels frenetic and disorganised, and staff-centred to me. They don't know me. I don't know them. They don't know that I know my illness better than them and they seem to find it hard to accept the fact that I do. I was still pretty ill while I was there, and I was getting more stressed out by being there too, so it was a huge relief when I was eventually transferred to Ward 29.

It's very slow progress, and I've been in hospital for 2 weeks now. The breathing is eventually settling and I managed to get off the aminophylline infusion on Friday (at least I think it was Friday...). I've now be transferred back onto oral steroids from hydrocortisone injections and have stopped having to have the intravenous antihistamines as well. All that is good. I'm still on oxygen at the moment, but a fairly small amount now. I'm utterly exhausted though. My body definitely feels as though it's been poisoned and as though it's taking a long time for the toxins to be shot of. Actually, the main problem now is that I have absolutely horrendous water retention. As you know, I've had some difficulty with water retention in previous admissions, but this time it's the worst it's ever been. My skin is splitting because it's so stretched with fluid. The stretch itself is painful. Most of the fluid is around my middle and my hips - hugely gathered around my hips so that I must be almost double my usual size (no exaggeration). My body is so overloaded that my bladder and my kidneys keep going into horrendous spasm, producing pain like I've never had before. I'm now on some meds to help with the spasms, and they certainly help the intensity, though they can still be protracted and very painful indeed. I'm on fairly high doses of diruetics as well as I have so much water to shift and my body wasn't shifting any of its own accord, but still there doesn't seem to be any significant reduction. The nurses say they can see the water sloshing around inside me when I move! I can't fit into my pyjamas. I can only stand to have the hospital gown tied loosly around the top of my neck because any pressure at all on my skin hurts. I did manage just about to squeeze into the bath for the first time today, but it wasn't easy and it was painful. It's demoralising. It's painful. It's embarrassing. It's uncomfortable. It's miserable. Everything hurts. I'm so heavy with the extra fluid that my back hurts if I sit for long or stand for just a few minutes. The weight of the fluid around my middle and up my chest is pressing on my lungs and making breathing harder, and a few days ago an x-ray showed some fluid on my lungs because of the oedema, although this at least seems to be clearing.

I'm miserable. I feel like a beluga whale. I'm sore. I'm in pain. I'm exhausted. My mind is in a blur from the events of the past two weeks and the unexpectedness of the allergic reaction. I'm thankful and surprised to be alive, but I'm so worn out and so sick of hospital.

Aragog

First of all I need to apologise for my long absense. I'm okay. I've been rather busy trying to catch up with my OU studies whilst starting my post grad studies at Newcastle University. In the past 10 days I've done six and a half weeks worth of OU work and written one and a half assignments. I've still a lot to do, but I'm getting there now.

So anyway, I realise that I owe you a story about a spider. It's from when I was in hospital the time before last.

The night before the spider event occurred I had a strange experience. I woke up several times through the night, and on each occasion I checked the time. The first time it was 1am. The second time it was 4am. The third time it was 6am. The fourth time it was 5.30am :oO Weird. The next night I told one of the nurses - R - about it and she said, 'Nooo, don't tell me that. I won't be able to come back in here now - it's too scary.' She then told me of several strange things that she's seen in the hospital over the years and that they all freaked her out.

A couple of hours later, when most were asleep but I hadn't been able to, R came rushing into my room.
'There's an enormous spider in the corridor and we don't know what to do!'
'You're not too scared to be in my room?'
'No. The spider is scarier. It's enoooooormous. We don't know what to do.'
'Um, put a cup over it, slide a piece of paper underneath the cup, scoop it up and put it out of the window.'
'We've put a cup over it, but we can't put any paper underneath.'
'Why not?'
'I'm can't touch it, D's too scared, and L isn't going anywhere near it.'

They were stuck. I was still attached to the aminophylline infusion and the oxygen, but all the same I could see that I was their only hope, so I gathered up my oxygen tubing and unpluged the infusion pump (it can run on battery for a couple of hours). I made it a couple of feet from the door before being stopped in my tracks by reaching the end of the oxygen tubing. I had no option but to do without the oxygen in order to save the nurses from the enormous spider that was terrorising them in the corridor.

I steeled myself for the encounter with Aragog that awaited me. I stepped out into the corridor, whereupon I saw the upturned cup concealing Aragog between my room and the nurses' station. I asked for a sheet of paper, then approached the cup brandishing the 'weapon'. I carefully slid the paper underneath the cup, stood up, and then wondered how I was going to carry the spider-containing cup to the window whilst still attached to the drip as I needed one hand to pull that along. I asked R for help.
'Noooo. I'm not going near the spider.
'I can't get rid of the spider if I can't get to the window.'
R conceded, although kept at full stretch of the drip line, and we made our way back to my room and to the window. After R flung the window open at arm's length, with a look of utter fear at seeing the enormous spider again, I removed the cup. I was faced with Aragog. I'd been expecting something of giant proportions. Aragog turned out to be about the size of a £1 coin.
'Honestly, R, that's not enormous.'
'Yes it is. Get rid of it. Please get rid of it.'
I shook the cup and paper and out fell Aragog.
'You do realise that we're on the 4th floor, R, don't you? The spider's probably just fallen to it's death.'
'I don't care. At least it's gone.'
I was getting rather out of breath by this stage due to the activity and lack of supplimental oxygen. R suddenly realised this and went back from terrified spider-hater to nurse. I was shuffled back to bed and had the oxygen put back on my face, whereupon I handed the cup and paper back to R, who was very reluctant to touch anything that Aragog had been near, but she did eventually take them from me, albeit holding them very tentatively.

A little while letter I was settling back down and not far from sleep when R came rushing back into the room.
'Oh no! I've just thought; the spider will probably come to haunt you!'
'What?'
'The spider's probably dead. Your room must be haunted because of what happened with the clock last night. The spider will come back!'
'I doubt it. I don't think spiders haunt people.'
'How do you know? I bet they do. I'm not coming back in here.
'Um. Okay...'
R left. I went to sleep. I never was haunted by Aragog.

Hospital Use Only

I didn't last long at home. One week exactly, that's all, and a strange week it was too. I went to a concert by Northern Sinfonia at the Sage Gateshead on the Saturday after I was discharged and picked up a cold from one of the many congested people in the audience. I could feel it scratching away in my throat by Sunday evening. By Monday I was beginning to cough and felt the bugs clawing their way south to my lungs. on the Tuesday I had to go and have bloods done at the GP surgery to rule out diabetes or thyroid problems as the cause of the neuropathy in my hands. I had a rubbish night on Tuesday with coughing, but nonetheless went to RVI on Wednesday morning for cataract surgery on my left eye. I expected them to turn me away because of my cold and cough, but the surgeon just said, 'Let me know before you're going to cough so I have time to pull the instruments away'!! I duly obliged - I didn't want to be his first accidental brain surgery patient, however good an eye surgeon he is. Fifteen minutes out of surgery and back on the day ward, with hardly time to feel relief that the operation was over, I had a call on my mobile from my GP. The blood tests I'd had the previous day showed I was 'dangerously hypernatraemic' with a sodium level of 152.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.

She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.

...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.

The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.

A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.

EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'

And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'





By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.

Toilet humour

I pressed the bell to call the nurse to bring me the commode. Commode brought. Marvellous. I sat down and did a wee (I'm sure you wanted to know that ;oP ). Marvellous relief. I realised then that the toilet roll was on the other side of the room. Bugger. I had to negotiate my way around the table, the chair, the bed, the oxygen tubing, the drip stand, the computer wire, the bin, my shoes, and the wheelchair, all with my pyjama trousers around my ankles, in order to get to the damned toilet roll. And then, of course, I had to do the whole thing again in reverse whilst keeping hold of the toilet roll. And of course this was the time that my blood pressure decided to drop again and I very nearly ended up head-first in the commode pan with wires and leads and trousers wrapped around my ankles. Luckily I managed to avoid giving myself a wee facial, but this wasn't my finest hour, it has to be said.

Results!

Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.

Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...

Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.

It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.

Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.

Results all round!

False start

I haven't disappeared off the face of the earth, rather I've had a false start to the year and come to you from Ward 29 at Freeman Hospital at the moment. I came from my festive jaunts with a cold from my nephews, which headed south to my lungs so that by the time I saw my consultant on the morning of New Year's Eve I needed antibiotics. We hoped that these would nip the infection in the bud, but I promised that I if I needed to go into hospital then I wouldn't hold on until after the weekend (Monday 4th), so when it came to Saturday and I was struggling to keep going I conceded and phoned the ward. My consultant had told the Charge Nurse on Thursday that I may need to come in over the weekend, and we'd hoped that if that that were the case then there'd be a bed for me, but unfortunately there wasn't and I had to go to A&E. I probably ought to have a called an ambulance, but W was with me so she took me up in her car, and to be honest I wasn't as ill at that time as I later became. It's a good thing that W was with me though, because although the triage nurse at A&E was swift and got me seen straight away, the rest of the staff were far from good, it taking 20 minutes of insistence from W before they gave me supplemental oxygen! To be fair, the young medic who saw me was okay, and he seemed to listen to what W was saying and took note of my letter of protocol from my consultant, but unfortunately there were mostly prats above him. There's one particular consultant at A&E who I don't get along with ... hmm ... well, it's more than that ... he's severely under-treated me in the past and on at least one occasion this directly lead to me needing to be ventilated once I got to Ward 29. Needless to say, I don't trust him. There's a look that passes between us when we see each other - mine saying, 'Don't come near me; I don't trust you and I don't want you failing me again,' and his saying, 'You got me into trouble before, I'm not coming near you if I can help it. ' (After the aforementioned under-treatment this doc was severely reprimanded by my consultant and by Ward 29's Charge Nurse). Unfortunately this doctor was the consultant heading the department when I went to A&E on 2nd, and seeing as I was getting more ill as time went by he couldn't stay clear of me entirely, and he so very nearly did it again - under-treat me. Granted they were all having enormous difficulties in cannulating me as my veins are buggered from the number of needles they've had stabbed into them over the years, but at the end of the day, there is always a way to get access if necessary, even if that means a central line. I needed access so that I could be given the aminophylline infusion, which is the only thing that ultimately helps when I get to the stage I was at, but when the docs couldn't immediately get access I heard the untrustworthy consultant say (from behind a curtain while he was dealing with the dislocated shoulder of a colleague's girlfriend) not to bother with the aminophylline then! W hadn't heard this - I think she may have gone out of the room briefly - but she knew something was wrong as soon as she saw my face, and in a panicked and already breathless state I managed to tell her what I'd heard. She fought my corner for me, the registrar came back, and 23 attempts later I had a cannula in my foot with the aminophylline running through. Thank God! Had it been left to Dr Undertreatment I think I'd have ended up on a vent again in the end.



I was transferred to RVI. Horrendous. I don't even want to write much about it, it was so awful ... all I will say for now is that I was there from the Saturday evening until late on Monday afternoon, and in the early hours of Monday morning when I was considerably worse than when I'd gone to A&E, I had to text W to ask her to phone Ward 29, to ask them to phone the ward I was on at RVI and tell them what treatment to give me. They did it - Ward 29 rescued me from the scariness that was around me (I don't want to use the word 'incompetence' but that's the word that keeps coming to mind) - but it didn't make me any friends. Actually it made the staff on that ward at RVI angry - the fact that I'd questioned their ability and was 'dissatisfied' with their care - which is perhaps understandable, but I was terrified for my life in their hands at this point and they weren't listening to what I was saying I needed, so I felt I had no option but to turn for help from those who know me and my disease intimately. Ultimately I was still at the mercy of the staff around me, and they were reluctant to concede all, but they did give me some of the extra treatment I needed so that by the time I was transferred here to Ward 29 I wasn't so desperately poorly. In fact, once I got to Ward 29 I was swiftly given all the treatment I needed, things settled much more quickly (probably helped also by my knowing I was safe now that I was with them), and before too long I was able to fall into that long, exhausting and exhausted big sleep. I slept until Thursday evening. I'm still tired and I'm still doing lots of sleeping, but I feel much more human than I did, and I am now able to stay awake most of the time that I want to. Hey, I'm using the laptop so I must be on the mend! :oD I'm still on the aminophylline infusion, and I'm still on 28% oxygen, and I'm still on the antibiotics, but I'm mending and will hopefully have the aminophylline down in the next day or two. The dose has been reduced, which is a step in the right direction, but the last couple of mornings haven't been good and this morning I was particularly tight (it was a bit of a rude awakening actually) so it seems that it may be a bit of a tricky judgement call for risking taking the infusion down all together.



So while everyone else has been snowed up, I've been holed up, and when I've been awake enough to notice I've felt a little left out with the whole 'snow bringing the country to a halt' thing. When my consultant came on grand rounds on Friday though he said that he's in no hurry to get me out of here and into the cold :o( It's not that I want to be out in the cold; it's that I want to be home, and I'd like my doc to want me to be home too :o( I reckon it'll be at least the middle of the week though :o( Ho hum, patience is needed - patience from the impatient in-patient.