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Archive for August, 2011

On Wednesday this week (17 Aug 2011) I had my first ever appointment as an out-patient at Dr Ferguson’s liver clinic in Birmingham. I was referred here by my specialist in Oxford, the lovely Dr Chapman, as he – and his team – believed it was time for me to have a transplant.

As transplants are only carried out at a few hospitals, I was referred to Birmingham as it was the closest to where I lived.

I was unsure of what to expect from this appointment. I didn’t know if this formed part of my liver transplant assessment, or if it was just to get a second opinion from a doctor at that hospital, or if I would have to start all over again at the beginning from diagnosis.

Dr Ferguson was lovely. He was very straight talking which I always find best. I would rather know the ins and outs of something than be kept in the dark.

The appointment started like any other out-patient appointment does. Pleasantries were exchanged – including the annoying introduction of, ‘Hi, I’m Dr Ferguson, how are you?’ British custom requires me to answer, ‘Fine thank you, and you?’.

He took my history, asked what medication I was on, did the strange tapping to make sure I am hollow on my stomach and then sat me down again in the chair. I was slightly worried at this point. We had already been in the room for 10 minutes (the standard time for an out-patient appointment in my experience) and all he seemed to have down is what my specialist would have done.

Then he turned to me and said, ‘Yes, so, I think we need to get you assessed for transplant.’ He talked through this process – which differs to all the information on their website – and explained about the risks.

Over the next four weeks I will be asked to attend Birmingham for 2 out-patient appointments with the transplant team. The first is a day-long session to be scanned, prodded and poked as much as humanly possible. The second is a longer stay of about one and a half to two days where I will be poked some more and I will get to meet the whole transplant team including people who have been through the transplant process already.

After this, the team at Birmingham make a decision of whether to list me or not and how urgent I am. Then the waiting begins.

I will be blogging the process of the transplant assessment so that people who are interested in this can follow it step by step. I will try to go into all of the tests that I have and what is being looked for as much as my stupid brain allows.

This is likely to be a fairly stressful process but one that is needed. And I can cope with the stress. I let very few things get to me.

And, as a huge plus, Dr Ferguson said I presented to him like a typical male PSCer. I was young, yellow and skinny.

Skinny.

He said I was skinny.

I have never been called skinny in all my life. Ever. This is a huge first.

So, thank you Dr Ferguson, you made my week.

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On Wednesday this week I have my first appointment at the hospital in Birmingham. This is the hospital that will be looking after me in my ‘transplant’ capacity, all the way from the initial assessment to the transplant itself will be done there.

I’m not sure what this appointment is on Wednesday. No one has told me anything. I knew I had been referred to their liver people, so my assumption is that they need to see me and agree with my specialist’s diagnosis. But we will see. All I have is a letter telling me where to go and when.

Like the good boy that I am, I had a blood test on Friday so I can go along with all my latest results. They’ll almost certainly want to take some of their own, but it’s good to go along with some too.

Now this is where I get sad. I got some of my results today – I keep track of specific tests so I can judge my overall health. The results that I track have all got better. Don’t get me wrong, I’m still well over what is considered normal (take the bilirubin for example, the high end of normal is 17, my current results are just under 200) but going by my history over the past 6 weeks I have been waiting for this appointment, they are all fairly good.

For example, my bilirubin a fortnight ago was 250.

I seem to be in the odd situation that getting better is not what I want. I actually want to be sicker. I want the doctors to see me at my worst. My biggest worry at the moment is that the doctors in Birmingham won’t agree that I need a transplant and then I will be left in limbo. Too ill to work but not ill enough to be listed for the one thing that will make me better.

Anyway, I guess I won’t know until Wednesday. I’ll update you all as soon as I can after.

I wonder if you could all do me a favour. Instead of wishing I get better, could you all wish that I don’t? That would actually be more helpful at the moment.

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So, a while ago, a who-I-expect-is-lovely lady called Christine came up with the Spoon Theory as a way of explaining her long term illness to her friend. She had chronic fatigue and used a finite number of spoons to explain the process of only being able to do so much. If you want to read about it, you can on her site: butyoudontlooksick.com

Now this system has been adopted by lots of people – in fact, anyone suffering from long-term fatigue will have heard of this and may even use it.

There is even the #spoonie tag on twitter.

But, you know what? I hate this idea. I really really do. The whole ‘theory’ (a word which I believe is much overused anyway) relies on the basic premise that each spoon is a portion of your energy for the day.

But what is so difficult about the idea that I have less energy than you? What is so difficult about explaining that I can only do this or that before I need to rest? The answer is nothing. The whole spoon concept just plays into the hands of those who think because I am ill I am also thick.

The whole idea of ‘spoons’, gah! It’s like something you would say to a child to help explain it to them. And the idea that the cronically sick have taken this on as a badge just sets up a whole set of ideas which will equate sick people with the inteligence of children.

It sets up the idea that I have the mind of a child.

Oh, poor Mark. He is so ill, but the only way he can understand this is by a silly little metaphor using spoons. Bless him.

I am not stupid. I am just ill.

Honestly, I beg all of you that use the idea of spoons to really think about what you are saying about yourself and others who are ill.

You have less energy. Explain it like that. Don’t belittle the person you are speaking to or yourself by resorting to the pathetic idea of spoons.

Go on, look at the hash tag again: #spoonie Really look at it and tell me that it is empowering? Go on, just try.

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