Not as planned

It feels like an age since my last post.  I know it's ten days or so, but it feels so much longer because so much has happened.

I can't remember what day it was that I last posted, but in the early hours of the morning of the Thursday (30th) everything started to go horribly wrong.  I lay in bed, trying to sleep and not doing too good a job of it, tossing and turning, and was a little worried that my lungs might go off because I'd had a bad day with them all during Wednesday.  I just began to doze off around 3.30am when I got a sudden stabbing pain in my back around my left kidney area.  At first I thought that maybe I'd just twisted and pulled something, but it kept coming back and was getting worse.  I tried to ignore it.  I took some pain killers.  I tried relaxing.  I tried different positions.  Nothing helped and it was still getting worse.

I heard Mum get up for the loo at around 5.30am, and on her way back to her bedroom I called out to her.  She came in to my room, saw that I was clearly unwell, took my temperature and sure enough it was 38C and climbing.  It was obvious that I was going to need to see a doctor, and probably sooner rather than later as I was in so much pain, so I phoned NHS24 (the Scottish equivalent of NHS Direct/NHS111).  The call handler asked a few basic questions then put me through to a nurse practitioner, who repeated some of the questions, asked a lot more, and made an appointment for me to see the out of hours doctor at 7am.  The out of hours service covering the area where my mum lives is actually based in one of the out patient departments of the Royal Infirmary Edinburgh (RIE).

As I was in no fit state to drive, nobody else was named on my car insurance, and the insurance company was closed because it was well out of office hours, we had to get a taxi to the hospital (my wheelchair doesn't fit in Mum and J's car).  By this time I was in agony, my temperature had risen to 38.7C, I was bright red, sweating, and feeling completely crap, so I wasn't surprised that the taxi driver guessed that we were going up to the hospital.

J and I arrived at the Out of Hours 'department' fifteen minutes before my appointment time, but the nurse took me straight through after the two doctors at the desk had glanced at me and looked a little horrified.  The nurse took a history, took my temperature, had me give a urine sample (lots of blood in it), and quickly decided that I'd have to go round to A&E.

I have never seen A&E so quiet!  There were loads of empty cubicles and hardly anyone in the waiting area, but I rather suspect that I wouldn't have had to wait long even if there had been more folk there.  Anyway, I saw the doctor soon enough, who made me yelp with the smallest of touches to my left loin area, so ordered a CT scan and then dosed me up on pain killers - lovely IV fentanyl (about a hundred times more potent than morphine, to which I'm allergic).  Oh my word, I could almost have laughed with the relief from the pain.  It was practically instant, and as fentanyl's a strong opiate, it's not terribly surprising that I felt very spacey.

The doctor had been concerned that I may have kidney stones, which is partly why she ordered the CT scan, but thankfully the scan came back clear for stones, instead showing inflammation and confirming the other diagnosis of pyelonephritis.  That's what I had back in February and it felt very much like that so I was expecting it to be pyelonephritis, but as there is a family history of kidney stones it could well have been that too.

I was admitted first to the Combined Assessment Unit where I was given some IV antibiotics, and eventually some more IV fentanyl too as I was close to screaming in pain. The CAU is just a stop-gap 'ward' though so at 1am I was transferred to a proper ward.  I thought that I might have been taken to one of the renal wards, but actually I went to the respiratory ward.  This may seem a bit daft at first thought, but actually it was because they were concerned that my asthma should be managed well because it's so brittle and unstable.  Also, fentanyl has significant risk of suppressing breathing, and by this time I was needing it IV every hour, so it was actually a very sensible decision to put me on the respiratory ward.

I've only been in this hospital twice, and it's quite a big hospital, but very strangely I ended up not just in the same ward as last time (after I was in ITU on the previous occasion), but also in the same bed!  The chances of that have got to be slim.

I have to say that all the care throughout my stay was excellent.  My asthma was managed well, all my meds were prescribed correctly (that doesn't always happen when you're on a lot of different meds at unusual doses), there was good communication between the different medical teams (although I was on the respiratory ward, I remained under the care of the general medicine doctors), all were concerned to get my severe pain under control so got the Pain Team involved, the nurses were great, and they all seemed to manage with my allergies well too.  I remember it being similarly excellent when I was in RIE with swine 'flu a couple of years ago, but the continuity of that excellence has made me even more confident in them.

So the care was great, but the illness was terrible.  My temperature was high, my blood pressure was low (often around 85/45), I was rigourous (shaking from the high temperature), the pain was agonising, I was nauseous, and I was completely exhausted.  The pain has continued, and I'm currently using fentanyl patches and nefopam to control it.  But I have finished the antibiotics (which were IV for the first four days) and I have managed to get home.  Actually, I was discharged early - too early really - because I had an appointment at one of the hospitals in Newcastle on Thursday that I was keen to get to.  Had I not had that appointment then RIE wouldn't have discharged me when they did on Tuesday evening and I probably would have stayed with Mum and J for longer after discharge.  As it was, though, I put J on my car insurance for 24 hours, and he drove me back to Newcastle in my car.  We drove straight to my hospital appointment here as it was at 11am (we left Mum and J's house in Edinburgh at 7.20am), and J waited for me to finish before he drove me home, then did some basic shopping for me, and eventually he got the train back to Edinburgh in the middle of the afternoon.  Bless him, he's ever so good to me and I so appreciate it all.  I really don't think I would have managed to drive myself down that day, and I was exhausted enough as it was with what I did do.

I'm now at home, currently sitting out in the back yard making the most of the afternoon's sun, and the cat is curled up next to me in the shade - he is a limpet cat at the moment, not wanting to leave me alone for even a few minutes.  I still have some pain, but I'm also still on the fentanyl patches and nefopam.  I'm still extremely tired and lethargic, and I still don't feel properly well, but I am a lot better than I was when I was admitted to the RIE.  My head is rather all over the place, and I feel somewhat shell-shocked by the pyelonephritis and hospital admission, and if I'm honest, I'm a concerned that there doesn't seem to be any explanation as to why I got pyelonephritis this time.  In February it was due to having a catheter while I was ill with my lungs, but that wasn't the case this time, and neither did I have a lower Urinary Tract Infection (UTI) from which it could have spread to my kidneys.  I don't know if this is something that's going to have to be looked at and thought about now that I'm home, or if it'll just get passed off as one of those things.  I can't bear the possibility of this becoming something else I'll just have to learn to cope with - another chronic condition - because the pain is so, so terrible.  I hope none of you ever have to experience it.