Archive for June, 2011


Please ignore the formatting and typos. All of this comes from my phone.

Today was the big day of my ERCP, one of the two final tests that I need before I can be referred for transplant assessment.

I say one of two but luckily (?) the CT scan I need can only be done on 20 July so my doctors will refer me with it.

An ERCP is a Endoscopic Retrograde Cholangio-pancreatography. It’s an examination of the bile ducts from the inside using a tube and lots of X-Rays.

A camera tube thing is inserted into your mouth, down your throat, into your stomach, out the other side into the small intestine and then around the corner. On this corner is a small connector to the bile ducts where an even smaller tube is inserted allowing manual inspection. Dye can be used to enhance the picture.

It was not pleasant. I imagine it would be nicer if my one only lasted the normal 30 minutes. Unfortunately I am a abnormality and it too 1 hour 5 minutes. I was sedated, but not knocked out – as you have to be for these things but on at least 4 occasions I came to enough to gag, vomit (not easy with a tube in your mouth) and generally make a nuisance of myself. Each time I got a new dose of meds.

Add in the following:

The surprise painkiller I had to take… In suppository form.
My blood still not clotting properly (a function of the liver that mine can’t be bothered to do any more). This meant I got 5 drip bags. One of Vit K, and four of Fresh Frozen Plasma.
No food or water from 7pm last night until 6pm today.

And you can see how my day has been.

I’m being kept in overnight for observation. Partly due the the amount of medication they shoved into me and partly to make sure I don’t bleed out.


So, yeah. Not really a constructive blog post. But and update for you and a moan for me.

I feel slightly better now, how about you?


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Liver and onions, Creative Commons image by ulterior epicure on Flickr

About 18 months ago I was diagnosed with Primary Sclerosing Cholangitis, a rare chronic liver disease. This you probably all know. You all also probably know that there is no treatment for it and that the ‘end point’ of it all is a liver transplant.

Dr Chapman, the lovely doctor who told me I have this – and specialises in this disease – showed me a lovely picture in November 2009 of my bile ducts and the distinctive ‘beading’ that was happening to them.

‘Not to worry,’ he said, ‘we won’t be talking about transplant for at least 10 years.’

Not too bad, I thought. I could cope with that.

Friday just gone I had another meeting with Dr Chapman – just over 18 months from when we first met – to have a chat about what has been going wrong recently with me. I’ve been suffering a ‘blip’ which would usually be sorted out with a stent or some dilation of the bile ducts where they had started to narrow.

I got to see another picture of my insides, but this time instead of a clear channel of white which indicates the bile ducts there was this thin line which completely disappeared in some places.

Pointing to this, Dr Chapman said, ‘We were hoping for a few locations we could go in and stretch. This isn’t the case with you, there’s narrowing everywhere. We’re looking at referring you for liver transplantation.’

So, yeah – I need a liver transplant.

This week I have a couple more pokings and proddings in Oxford and after that I will be referred up to Birmingham to be assessed for transplant and put on the waiting list for a transplant.

I don’t blame Dr Chapman for his initial 10 year estimate. I have read enough about PSC to know this is the mean case time from diagnosis to ‘end point’, but I have also read enough to know that this PSC is wildly unpredictable. Dr Chapman is a great doctor; I trust him completely. If he thinks it’s time for this, then it is.

So, I’m still not back at work, but I went in this morning to let them know what’s what. I decided to do this face to face as it’s not the easiest thing to tell someone over the phone. They were, as always, very understanding.

I explained that until the assessment is over I just need to stay at home and rest. After that, well… I guess that is up to what the transplant assessors decide.

My biggest worry at the moment is that I have gone from stable within the normal ranges for all my tests to ‘you need a transplant’ in about 7 weeks. If that level of degradation carries on, what will I be like in a month? Two months? I guess, at this point, the iller I am, the more likely I am to get a liver sooner… It’s just a waiting game now.

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So, why am I in the hospital?

Well, my liver isn’t happy and no one is really sure why. The plan for my time here is to figure out what is wrong and then fix it. How long am I going to be in? Well, at the moment it is looking either like another day or, more likely, another 2 days at least.

What is wrong?

Your blood has this stuff in it called bilirubin. It’s a useful little thing tha does lots of really boring stuff. But, if you liver isn’t happy, it starts to build up. Because of that it is used as one of the markers to see how happy a person’s liver is. There are others, ALT, ALP and so on, but my favourite is Billy.

Normally I hover around the higher end of normal, occasionally popping over the top – but that is to be expected in someone with PSC. But, over the past 6 weeks, things have change. See for yourself… Can you spot the concern? The shaded area is the normal range. You may have to rotate the image, sorry.

Now, I have battled along. Tried not to let this affect my life, but this last week that has just not been possible. For a long time now I have been pushing myself to get through the day. ‘One more hour until home.’ ‘Home then straight to bed.’ But not this past week.

You see, too much Billy in you system and you start to go yellow (anything above 40 – now check out my levels. Wooo!). Too much and you start to get tired – as in, I am finding it hard to walk tired. Too much and you start to itch – a crazy itch that doesn’t go away when you scratch it. Too much and you start to feel sick – all the freaking time.

Monday I left work after lunch as I felt so bad. This was the first time that PSC has ever interfered with my work life. This is not something I am happy with. Luckily(?) that night was when the doctors called me into hospital. I’m not sure how I would have coped at work this week. In fact, I probably wouldn’t have.

But… And this is a big ‘but’… Work have been amazing. They are always willing to let me moan on about this. They are always willing to help me where possible. In fact, if they had it their way I would have been off work a lot sooner.

So, I guess this post has two purposes. Firstly to introduce you all to my evil friend Billy who is ruining my life. And secondly to say a big thank you to my work for being so amazing.

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So… It has been a very long time since I last Oates. My fault totally.

Having PSC seemed to have just become part of my life and therefore I didn’t need an outlet for it.

But I am writing a post now, so as you may have guessed, things have changed.

Right now I am sitting in bed in hospital. I was told to admit myself after a series of events which have caused concern to the doctors. Let me take you on a journey.

It all started about six weeks’ ago when I had a friend down to visit for the weekend. The Friday night went well although I felt a little off. I awoke on the Saturday to crazy itching and what I am calling the worst cold of my life. This carried on through the next couple of days.

Everything started to calm down but I never could quite shake the itching or the feeling of being sick. Over the course of the six weeks it slowly ramped up to above the initial level – and was joined by some new symptoms…

Upper right quadrant pain
Lack of appetite
Rapid weight loss

It was these that triggered the doctors to want to prod me some more and promptly an ultrasound and MRI were ordered.

I had the ultrasound last week and it showed nothing – not really a good thing… This coupled with some new funky blood results caused the doctors to phone me in the middle of the night (okay, 8pm but I was asleep) ordering me into hospital as they needed to speed up the checking.

So here I am. At the moment I am waiting for a drip to come and give me some fluids, tomorrow I get to have an MRI and after that, well who knows. All I can hope is that I get back to health soon. I can’t carry on feeling like this.

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