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Still in hospital

I guess I should keep this.. er.. journey updated. I’m still in hospital, I haven’t had an ERCP/MRCP yet, my fever’s gone, my antibiotics have finished, the catheter’s out (yaaay!), and all I’m really doing is hanging around waiting for an MRI (the scanner) scan so that Leeds can see if anything else needs doing.

I’m getting deja vu, in fact. The exact same thing happened 2 years ago, before I was diagnosed. Spent a week in hospital after my fever had gone, wasting my time and money (I don’t get paid sick leave, so it costs me about £80 a day) waiting for an in-patient MRI availability that never materialised. I ended up having the scan as an out patient a few weeks later.

What’re the chances that the MRI scan ends up being an out patient appointment again? Pretty high, I reckon. At least they’ve let me out on day leave for the past 2 days!

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And the winner is..

The MRI! No, not a scanner, but the abbreviation that Manchester Royal Infirmary seem to always be known by. How that doesn’t cause constant confusion, I have no idea.

So I’ll be going on a little trip into Manchester for my MRCP, where someone will plonk a plastic tube into my liver. Not sure when it’ll happen, but I hope it’s soon, coz I HATE this sodding catheter. I mean.. Why do I need one for treating an infection? They didn’t do it last time, when it might’ve made more sense.

It was going so well..

Well, being normal coloured didn’t last long. Over the weekend, I started feeling a bit feverish, and on the Sunday I was yellower than a Lego man, with a full fever going on.  Poo!

I visited my gp on the Monday, and was referred straight to hospital, who put me on various drips to fight the fever and the infection. My temperature got up to 39.8, which I’m sort of proud of.  🙂 I also had a ct scan, an xray, and lots of blood taken. For some reason, they also gave me a catheter. I can’t say I appreciated it!

This morning, they told me what the scan revealed: a blocked duct. The doctors are now trying to contact Leeds (I’m currently in Stepping Hill hospital, in Stockport) to see who gets to do an mrcp, to unblock the duct.

SAD?

Sorry for the long time between posts, but I’m afraid I’ve been a bit SAD, lately, and couldn’t find the motivation to type up anything.

However, it seems that that in itself is interesting..

Have I mentioned that I spend about half a year being jaundiced?  I do.  The doctors always seem doubtful when I tell them.  When I finally went back to St. James hospital in November 2013, the doctor wanted me to have another blood test so they can monitor my liver function, as they think there might be something else on top of PSC that’s making me jaundiced.  Apparently it’s not normal for PSCers to be jaundiced solidly for so long.  Suffice to say; I still haven’t had a blood test appointment come through, which probably means my GP lost it due to having two offices.  If the request even got as far as my GP.  I don’t have a lot of confidence in the NHS anymore.  They only seem to be good at losing paperwork.

So, I’ve had PSC across 3 winters now.  The first one was when the liver problems first surfaced in January 2011, and the problems didn’t start to calm down until April.  Then I got jaundiced in October and didn’t return to a normal colour until April 2012. Exactly the same thing happened in October 2012, and I only returned to a normal colour at the end of March.  You can almost set it to GMT/BST! When the clocks go back, I go yellow, and when they go forward, I return to normal.  I get jaundiced a few times in between, but as my wife often points out – it always happens when I’m stressed. 

So.. is my jaundice being influenced by my mood?  What kind of flakey rubbish is this??  What’s cure going to be – Reiki?  😮

Actually, I suppose Urso is derived from Chinese medicine, so maybe Reiki is the answer.  Can you get it in pills?

Night Sweats

Still no contact from Leeds or Stepping Hill.  It’s like they’ve forgotten about me!  😐  I keep meaning to phone them to chase them up, but my PAYG phone contract isn’t really geared toward making actual phonecalls.  I think my credit would expire in about 3 minutes.  😛 I might have to buy a SIM just to call them.

Aside from that, I thought I’d write about the only constant side effect of my illness. It’s something that apparently doesn’t happen to every PSC sufferer, but it’s definitely happening to me; it’s night sweats!

Sweating at night probably doesn’t sound that bad.  So I get a bit sweaty at night? Who cares!  okay, so sometimes I just get a bit clammy, but more often than not, it’s full on, sweating under heavy sun while doing heavy lifting kind’ve sweating!  I’ll go to sleep normally, sometimes even a bit cold, and then 3 hours later I’ll wake up drenched in sweat.  It’s not easy getting back to sleep when all the bedclothes are cold and a bit wet, so I usually end up sleeping on a towel after I’ve woken up.  Not nice!

I’ve been feeling rough for the past weekl, so I’ve been experimenting with it a bit. I’ve noticed that the chances of me having bad night sweats is significantly increased when I’ve taken ibuprofen.  When I took paracetamol, or nothing at all, I was fine.  Weird, eh?

After doing a bit of googling, it seems that night sweats are a known side effect of ibuprofen.  I never used to get night sweats from ibuprofen before I had PSC, so I think it’s related in some way.  It’s probably because my body chemistry is all out of whack from the illness, although there is a chance that it’s just an age thing.  😛

So, problem solved!  No more taking ibuprofen for aches, pains, or hangovers before bedtime.  I’d much rather be achey than sweaty!

and then: Nothing.

I realised today that I should’ve had another appointment by now, but I’ve heard absolutely nothing from either hospital.  I think someone needs prodding!
Health-wise, my problems have come and gone.  I spent ages being yellow, which may or may not have been caused by the Urso.  They don’t tell you how to take it, you see..  it just says 2 pills, twice a day, with meals.  It doesn’t suggest which meals, so I decided to take them with breakfast and dinner.  Often I forgot, and took the pills an hour or so after dinner.  I stayed yellow for ages.

Then I did the math..  Urso replaces my own bile, but my liver still wants to produce bile, and the gall bladder still wants to store it up.  Therefore, it must be possible that taking too much Urso (by taking it while my body doesn’t need any) can potentially overflow the system, and could be the reason that I was still jaundiced?  I don’t know if that’s how it works, but since then I just don’t take any Urso if I forget to take it prior to a meal, and I’ve gone back to being a normal colour!  🙂

Bone Density: Normal!

I got a letter from the hospital the other day; opened it, read it; it said they’d found that my bone density is currently normal. Hooray!

According to the pscsupport website, PSCers can lose bone mass at an average of 1% per year, which is why I’m on the calcium/vit. D supplements.  It’s to do with the liver not absorbing nutrients properly.  As a vegetarian, I’ve been on multivitamins for a couple of years now, so I wonder if that’s helped at all?

As for life generally; it’s okay.  I still get pains and weird feelings in my stomach area (I seem far more susceptible to trapped wind), and still get incredibly bad headaches.  The worst thing at the moment is the exhaustion – I wake up at 7am, and can barely keep my eyes open by 10pm.  Some people probably think that’s normal, but before all this, I used to only need 5 hours sleep a night.  While exhaustion is a PSC side effect, there are other potential causes:

  • Age (I was hoping the transition to chair-sleeping father would be more gradual)
  • Exhaustion (PSC and fatherhood came at about the same time)
  • Lack of caffeine

The last point is a weird one; when I drink coke (or Dr Pepper) while my liver’s having a bad time, it gives me really bad liver/abdominal pains.  It happened during the very first liver problem, too, but never at any other time.  Cheap coke is okay, as are other fizzy drinks, so I guess it’s an ingredient that’s setting the pain off, rather than the gas.  I used to drink faaaaar too much coke, so it’s probably a good thing that I now have to drink in moderation, but it means that I’ve gone from having lots of caffeine on a daily basis to having almost none.

ooh, that reminds me!  I got a search engine hit on my bike commuting blog from someone trying to find out if people with PSC are allowed to drink alcohol.  For future reference; my doctor says yes, but don’t go crazy.  Personally, I have 3 bottles of beer each Friday or Saturday, and the odd Gin & Tonic during the week. I don’t drink to get drunk…

“What’s so bad about being drunk?”
“You ask a glass of water.”