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Bak 2 Tha Hospitalz

June 12, 2015

It didn’t take long to be hospitalized again.  I never felt quite right after the stent was put in, and just over a week later, I was back in Stepping Hill with a stupidly high fever.

The infection had got past my antibiotics by being a type that they had no effect on.  No-one seemed quite sure what had caused the infection this time around, so after a week at Stepping Hill, I was sent to St James Hopsital for another ERCP to see if it was due to the stent slipping, or something like that.

The answer was no, it wasn’t a slipped stent.  So, it could’ve been caused by the first ERCP, or possibly it was just a PSC-based blockage with no actual gall stones involved.  No-one was quite sure, but by the time I’d got to Leeds, the IV antibiotics had worked their magic on the infection, and I was starting to feel okay again.  It had certainly confused the doctors at Stepping Hill, because the fever was only showing itself at night.  I suspect this might be a way of telling the difference between a gall stone infection and a cholangitis infection (at least in my case) – gall stone fevers go on all day, but cholangitis fevers only start getting bad after 4pm, and vanish completely in the morning.  I don’t know why this might be, but it’s certainly been the pattern.

I stayed another week at Leeds, for a few more tests and to see if a different antibiotic worked.  I’m now on alternating antibiotics – Amoxicillin and Ciprofloxacin.  I alternate monthly, to try and reduce the chance of developing an immunity to them.

I don’t recall what date I got out of hospital, but I know when I returned – 31st March 2015.  This time it was under much nicer conditions – it was just a scheduled clinic appointment to check up on my wellbeing and get a revised blood test.  I have one appointment a month, to keep an eye on my liver and make sure it’s not getting too out of shape.

The reason I remembered the 31st is because the very next day, on April 1st, I got a call from Leeds.  At 03:30AM.  About a potentially suitable liver being available.  aaaargh!!!

Naturally, our plan to get to hospital went totally wrong.  We didn’t actually do too badly getting ourselves packed, and getting my son to his grandparents, but because I’m forbidden by the doctors to drive to a transplant, the transplant coordinator arranged for transport for us.  As the donor was on life support, there was more flexibility about when to get there, so she wasn’t phased by the ‘might take up to 4 hours’ estimate by the ambulance service.  So we waited.  For the full 4 hours!  Just as I was phoning the hospital to say they haven’t turned up, they turned up. It’s like they waited for exactly 4 hours before coming to collect us!

When we got to Leeds, we were told that there might be a problem.  The donors relatives had vitoed the donorship minutes before we’d arrived, so it looked like it was a wasted journey.  As the transplant coordinator told us this, he was bleeped..  the relatives were indecisive, and were debating it, so it might still be on!  Half an hour later, and no.. they stuck to the vito, and we went home with the ambulance crew who’d brought us there.  hmph!

It was back to normal life after that.  My jaundice came and went a few times, and I got liver pains and nausea from time to time, but no fevers.  The antibiotics combined with the stent seemed to be doing a good job!  It took a while to get my weight back, as my appetite never really returned.  I’m even pondering getting back into cycling, as I really miss it – especially now that the weather’s improving a bit!

So, when I got another ‘potential transplant’ phonecall two days ago, a part of me was actually slightly sad at the prospect of being hospitalized and having to take it easy for months.  Seems silly, really, but I haven’t felt normal all year, and the first time I start feeling a bit like my old self, it almost gets taken away again.  I say almost, because this one was a false alarm, too.  We got to hospital in 2 hours, which is pretty good considering I was at work in central Manchester when I got the call, but we then had to wait 9 hours to find out if the liver was split or not.  In this case, it was split, and two children got their livers fixed.  It’s hard to be grumpy about that!  🙂  ooh, and I also found out my bilirubin levels. Just before the call, I’d gone REALLY jaundiced, and was still pretty yellow when I got to the hospital.  The normal level is between 0 and 0.3 mg/dL, and mine was 1.7 mg/dL!

Apparently I’m now pretty much at the top of the Blood Type A list, so I’d better get out on a bike sharpish – the next call could come any time soon!!!  😮

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