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

Today is the tomorrow that you worried about yesterday.

Wednesday, 25 January 2012


I got home on Sunday!  Hurrah!  The discharge process is never swift, with meds taking ages to come up from pharmacy and doctor's letters needing to be done, but I did eventually get  home in the late afternoon/early evening.  My step-mum, B, and my dad picked me up and brought me home, saw me settled in at home and then let me get on with exorcising the hospital clatter from my head and cuddling the cat.

It's always a mixed thing to come home from hospital.  On the one hand, it's fantastic to be free and to be able to immerse oneself back into ordinary life.  On the other hand, there's a difference between being well enough to leave hospital and being truly well, so coming home can sometimes be hard work when you live on your own and you've gone having to do nothing to having to do everything.  Given the choice, though, I'd always opt for coming home if I'm well enough.

I thought I was well enough to come home on Sunday.  I was well enough ... except that I had started sneezing again on Sunday morning while I was still on the ward.  No other symptoms, just sneezing, but of course that's potentially the sign of a cold, which is not a simple thing when there's severe brittle asthma to consider.  So yes, I came home and all was well ... until Sunday night, which was very disturbed by coughing and wheezing, and snuffles and sneezes.  I woke up very congested on Monday morning.  Thankfully the congestion cleared soon enough and there's no longer any sign of a cold, but I've otherwise been rather unwell.  I've got a very harsh cough; I'm persistently wheezy, even if not desperately short of breath most of the time; my nebs are giving me only five or ten minutes of really clear breathing before I feel it all tightening up again; my temperature has been up again (38.3C this morning) and I've had some rigors; I've had an intermittent thumping headache; and through last night, this morning, and early this afternoon I was retching but not actually vomiting as there was nothing inside to come up.  All in all, I feel poorly.

I went to see my GP yesterday and was given antibiotics so I'm hoping they'll kick in very quickly.  I've been back to the surgery today with a sputum sample that the doc asked me to put in, but it'll be a few days until the result from that are back.  In the meantime, I've emailed J on Ward 29 to tell him that I may be bouncing back to them :o(  I really don't want to.  I'm sick of hospitals.  I'm sick of being ill and I was hoping for a period of respite after my latest admission.  I usually get at least a few weeks of relative health after I've been in hospital, but this time it was a matter of hours before I was starting to feel ill again.  I'd throw my toys out of the pram if I had the energy  ;oP

On a positive note, I am humbled by my church who holding a full day of prayer tomorrow just for me!  Given my current state of health/ill-health it is very timely, but I am, as I say, deeply humbled.  My vicar asked me to produce an information leaflet about myself with points for prayer included in it, and a photo, so I did that last week while I was still on the ward as I suddenly realised that M (the vicar) would need this a while before the planned prayer day.  He came round yesterday to see chat through the day and see if I had any questions and he said that all the info sheets he'd printed off had been taken by folk on Sunday after the service so he was going to print off some more, and he'd also made bookmarks for people to take.  These have my photo on and details of the times and venues of collective prayer tomorrow, although they also encourage folk to pray any time they can.  It feels a little strange having this day for me, after all, I'm nobody special, I'm just me, but I appreciate the prayer day greatly.  There will be various venues for people to get together to pray for me at various times throughout the day, and some people may well come round here to pray with me and for me at home.  I was hoping to get to at least one of the other venues, but I'm not sure I'm going to manage that with being so poorly again :o(  Yes, this day of prayer is very timely, and terribly, terribly humbling.

Saturday, 21 January 2012


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?

Tuesday, 17 January 2012

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.'
'And Becky?' She called down the phone just as I was about to hang up
'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.

Tuesday, 10 January 2012

Below par

It's the season for lurgies.  There are a lot of them about at the moment, and although I've done my best to avoid them I appear to have picked one up somewhere along the way.  It's not a major lurgy, presenting with slight coldy symptoms, a high temperature, and a hacking cough.  I'm sure it's viral, and most likely a cold of some kind, but there's no such thing as 'a simple cold' when you have severe asthma and I'm suffering.  My lungs are very unsettled, with nights being particularly bad and I'm not getting much sleep at all, despite lots of nebs and being propped up. 

My peak flow was 180 this morning.  It's been worse, a lot worse, but this doesn't bode well, and I'm a little nervous.  I'm at the stage where I'm not too awful if I don't move around, but as soon as I start to do anything I'm very breathless and wheezy.  Actually, I'm pretty wheezy most of the time, but it's a low-grade wheeze that I'm so used to that I don't notice too much until it starts to interfer with things; things like sleep, or breathing after a coughing fit, or getting comfy on the sofa.

There's nothing I can do at the moment but take as much care of myself as I can and keep up with the nebs.  I'm on maximum meds I can have 'in the community', as yet there's no call for antibiotics, and I'm not at the point of needing hospital.  However, I did go up to the ward at the end of last week for a portacath flush, when I was already below par, so the Charge Nurse knows that things aren't great, although things have deteriorated since then.  I'm really hoping that I can stave this off and get through without hospital, but I'm not 100% convinced I'll be that lucky.  Just so long as I can get to the Nigel Kennedy concert I'm supposed to be going to on Wednesday, and Lord of the Dance that I'm meant to be going to on Friday.  Oh, and if I end up in hospital after that then a short admission would be good because my MA picks up again at the end of the month ...  I have a feeling that I'm asking too much :o(