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Oesophageal varices

On Monday 3 October I had yet another camera-in-mouth hospital visit. This time it was to check and see if I have any oesophageal varices. These are just like the varicose veins that your grandparents may have but inside my throat.

They can have the nasty habit of opening up and filling your stomach with blood. If you ignore the warning signs (pain in the throat, vomiting blood) then you can very easily die from this. But then, if I had those symptoms, I think I would be on my way to A&E very quickly.

They develop in people with liver diseases because of a build up of pressure in various veins. When the liver becomes upset it is harder to push blood through it. This results in an increased pressure in the portal vein – this isn’t so bad in itself. Where it gets worrying is this pressure follows the circulartory system backwards until it finds a weak point. The first one it comes across is the oesophageal veins.

The treatment, if the veins are bleeding, or close to popping is to band them.

So, I had a camera down my throat to looks for this. But good news for me. While the doctor could see that there was increased pressure in my veins, I only had one small varicose vein (in fact, the doctor almost missed it). It didn’t need any intervention and I was sent on my way. Woo! Go me.

I think that is the end of my camera swallowing antics for the moment.

On to the next big hospital visit. Part one of my transplant assessment on 31 October.

Endoscopic ultrasound

Ahhh, my good friend the endoscope. Well, I say friend – you’re more like an annoyance who somehow keeps working their way into my life… And body.

On Friday 16 September I travelled up to the lovely new Queen Elizabeth Hospital in Birmingham for an endoscopic ultrasound. I was asked to have this procedure by Dr Ferguson and his team as they wanted a better look at my bile ducts.

He said this was only to give them more information – but I know they we taking a closer look at them just to make sure that there was no cancer. Which there isn’t. So YAY for that.

Firstly, I really most congratulate the NHS Trust in Birmingham for creating an amazing hospital. The building itself is breath-taking; and seeing it surrounded by all the old red-brick buildings gives the whole place a sense of history.

On the inside – and I mean this is a positive way – the place looks like a airport. I really wouldn’t be surprised if a Tie Rack popped up around one corner or that there was a duty free shop that sold those huge Toblerones.

I wandered down a big open… concourse would be the only word to describe it… until I came across the endoscopic out-patient department. I was greeted by a lovely lady who booked me and and no sooner had I sat down in the waiting area did I have a nurse calling my name asking me to come through to get prepared.

Anyone who has a procedure in hospital knows what happens next – lots of waiting. But after that I was taken into the room where it would all happen.

The nurses did their best to comfort me – but we all knew what was coming. A big tube was going to be forced down my throat. There really is no way to get around that – or to get around the fact that at least one of the nurses is there to hold you down.

The doctor, just before he was about to start did ask me if I had any issues with blood. When I explained that my clotting was usually slow due to my stupid liver there was a minor panic as he called for some strange machine. A couple of pricks on the finger later and I guess he was happy as we started.

Before they injected the sedative into me I was asked if I wanted the numbing spray in my throat. In accordance with Mark’s first law of hospitals (If you are offered any drugs take them. You are being offered them as the doctor, if they were in your position, would want them) I said yes.

It wasn’t bad. It tasted like banana mixed with chilli. Really not bad at all.

I was then given the sedative and expected that to be the end of what I remember… unfortunately not so. It seems that I have a much higher tolerance to the sedative than most people.

In Oxford for my ERCP I ‘woke up’ multiple times. In this case it really didn’t do anything other than make me slightly woozy. That was it. They kept giving me more and more and at the end they said that they had given me twice the usual maximum dose.

The procedure, for those interested, involves the insertion of the endoscope tube (about the width of your index finger) into the throat, down the oesophagus, into the stomach and out the other side. When there they inflate a small balloon and then a special receiver takes ultrasound images from the inside.

There is a lot of jiggling and moving backwards and forwards as they get multiple images.

I am sure that if the sedative had worked as it was meant to I would have had no problem.

I have another endoscope scheduled for Monday 3 October – this one is to look for oesophageal varices so it shouldn’t take as long. Hopefully.

It was my birthday! Wooo!

I love birthdays. I am now officially 28 years old, which is just so cool.

I remember when I was a kid and thinking about how far away those numbers were, and now I am here. I don’t know why but I find that so cool. And now, at the age of 28 I look at numbers such as 50 and think about how far away they are. How cool will it be to be them? So cool.

But, will I get to be them? It’s odd, at the age of 28, to be contemplating my own mortality.

A liver transplant is a big operation with lots of things that can go wrong. It’s the kind of operation where they don’t just give you survival statistics, they break it down for you:

Liver transplant survival statistics

The overall 1-year survival rate of liver transplant recipients who receive an organ from deceased donor exceeds 86%, with 5-year survival rates almost 72%

There is no exact model to predict survival rates; however, those with transplant have a 58% chance of surviving 15 years.

Cheery, hey.

Then you have all the medication I get put on afterwards, which could cause a reaction. Or I get an infection that I can’t fight off.

And that is just assuming I get a liver. It’s possible that I may not.

I am still waiting on the transplant coordinators getting in contact to let me know when my assessment is. The referral went to them 3 weeks ago today.

It’s possible that I may get on the list but a liver doesn’t come up in time.

But I am trying to push all of that thinking out of my head. Why dwell on that. I would rather dwell on where I am going to take Joe on our honeymoon when I get better.

So, while my mind occasionally wanders to possible end-case scenarios, you’ll probably mostly find me thinking about birthday presents and holidays.

Meeting Dr Ferguson

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.

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.

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.

My worth

As regular readers of this blog (read people I force into reading this) you will know that I mainly use this as a method for clearing out what’s in my head. If I don’t write some things down they just run around and around in my head and slowly drive me insane. I think this is where the idea of me wanting to be a writer comes from. In reality, maybe I don’t want to be a writer; maybe I’m just seeking the peace that comes when you’ve got something out of your head.

And now, with that last line I have a whole new string of ideas spinning around in my head about the nature of my writing process. I’m sure they will work its way out as a blog post at some point. But that’s not what this one is about.

  • How do you measure your worth as a person?
  • How do you know when you are being useful in your life to others?

For some people these are really hard-to-answer, deep questions. Not so for me. I figured them both out at about the age of 13 when I was just starting the final two years of my GCSEs. Basically it goes like this:

I both have ‘worth’ and ‘use’ if the following conditions are met:

  1. I’m in a job where I feel that I’m doing some good to someone else somewhere. The more good I feel this job has the more ‘useful’ I feel. This explains, for those who are interested, my choice in jobs: The charity and education sector.
  2. I’m getting paid what I feel is a reasonable amount of money. The more money I get paid the more ‘worth’ I feel I have.
  3. The above two are augmented by how well I’m doing compared to my ‘benchmarks’. Throughout my life I have met people – some I like and some I don’t – whom I judge myself against. So the ‘usefulness’ I feel in point 1 can be boosted or reduced if one of my benchmarks has a job that I feel is more ‘useful’ than mine. Same with salary in point 2.

Now, this may make me shallow. And I can understand why people think that. But this system has worked for me. It’s what makes me strive forward; there are always more ways to help and there’s always more money to be made. Plus, I have to keep up with my ‘benchmarks’ – can’t have them outdoing me.

I know that the more I work – the harder I work – the more I help other people. The harder I work, the more money I get and the more worthwhile I feel. I can provide for my family and friends.

Now this is becoming a problem with my current situation. I am not at work…

…and it’s killing me.

I know that I still technically have the role – but it’s not me there doing it. I’m not doing something which is of use to people. I’m not doing anything. So, at the moment, while I am not working, I am not useful.

Also, because I’m off on long-term sick, quite rightly, I’m not being paid my full wage any more. In fact in the next couple of weeks I will drop from half-pay down to nothing. In my eyes, my ‘worth’ is being reduced to nothing.

Then bring in my benchmarks. As I said, some of them are people that I like – some are very close friends – and I’m happy for them. They have great jobs in which they do great work. Seriously, I would employ them without question. But that doesn’t stop a part of me measuring myself against them. Right now, they’re amazing… and I’m not.

Some of my ‘benchmarks’ are people I don’t like… And this is worse. I measure myself against these people who I don’t think are worth much and I’m lacking… I’m below zero.

I don’t see a way to fix this short of throwing out the system which defines me as a person. And even if I did throw it out, I’d need something to replace it with.

Part of me thinks it would be better to push myself even more. Go back to work. Get out of bed, use energy drinks, go to work, sleep as soon as I get in. This would give me all three of my points back. I would have both ‘worth’ and ‘use’. But what would this do to my health?

However, there is an argument that me getting worse is not always a bad thing. As it stands I’m not a priority transplant case – or at least, when I get listed I won’t be. If I make myself more ill, I could push myself up the list.

And ultimately, wouldn’t that be a good thing?