I’m sure everyone you know on Facebook or Twitter is doing something like this, but I thought that I would jump on the bandwagon and have a go.

2012 has been a odd but very good year for me. And there is one reason for this: All of the support that I have got from my friends, both old and new, and those around me. Really, this year could have gone a very different way without you all.

I started the year having just about come back to a normal colour. All my jaundice had left me and I was an amazing 11.5 stone.

I want to put this into context. I haven’t been 11.5 stone since before I was 11.5 years old. I have always been a ‘big lad’, ‘built for rugby’ and ‘a little chubby’.

That’s not to say that I didn’t carry it very well, but for me, being 11.5 stone was shocking.

At the beginning of the year I had just started to return to work. I was planning to work my way up from 1 day per week all the way to full time again. This was the plan.

However, this never quite happened. I got to 3 days a week and found that every time I tried to go up to 4 days per week, I just couldn’t do it. The tiredness would come back and the yellow would start appearing at the edge of my eyes again.

This is a pattern that would follow me through the year. Whereas now I can, maybe, at a push work one full week, I will pay for that the week after.

This is just a lovely reminder that while I am ‘better’ I am not ‘well’. There is damage to my liver and I am not quite a whole person.

But it was while I was panicking about what would happen in my job if I couldn’t make it back full-time, I received a phonecall from someone I knew through the electric car world. Offering me a job! They were happy for me to work 3 days a week and I got to work in the charity sector helping the adoption of something I firmly believe will help us all.


On my two days off per week, I had my side projects. These are the ‘Mark Fun Things’ which I hope that one day will turn into ‘Mark gets paid for’ things.

I showran and produced a second series of Supermarket Matters, my online audio sitcom.

This had it’s ups and downs but as always I loved every minute. I can’t say thank you enough to everyone who helped with this, from the people who supported our funding campaign, to those who we’re involved in some aspect of its creation to those who listen to it.

I owe you all more than I can express here! Thank you so much.

The production company I set up, In Ear Entertainment, that Supermarket Matters is released under, also started work on a couple more projects.

0D Cinema is an evening in a Theatre in Cheltenham where you will be treated to a Science Fiction Double Feature. This will take place in the Parabola Arts Centre, Cheltenham in March next year and I am writing the two scripts for this.

Also, the Shakespeare’s Sonnets podcast was started. A good friend and I are going through each of the Sonnets and looking at them from an non-academic view point. It is great fun and very funny. We are getting up a fair following, so give it a listen if you haven’t.

There are also three other projects that have been being planned but aren’t quite ready for public release yet. But do stay tuned.

Along side this I was asked to stand in and co-host a weekly video podcast on Electric Cars. Transport Evolved really is the news show for electric car news. I hope that I have been received well as a co-host. I know that I enjoy doing it.

Finally, I have been writing a weekly (ish) column on geeky TV on sidekickcast.com for the past couple of months. This has allowed me to rant about such things as why Amy is a horrible companion in Doctor Who and what geeky TV shows you are missing out on.

And, maybe the scariest thing I have started this year: Stand up. Yes. I get up on stage and I make people laugh. At least, I try to. And from what I can tell, I’m not too bad.

Don’t get me wrong, I’m no TV comic. But I can hold my own, it seems. This has had a huge effect on my writing. If you are a comedy writer, do get up on stage and try it. It will teach you more about joke construction in 10 minutes than scriptwriting does in a year.

I’ve missed things out here: A few articles I’ve had published, a script of two I have written just for fun and most importantly, all of the plans I have for 2013. You’ll just have to wait for them.

As I said, I have all my wonderful friends to thank for the above. Without your understanding and help I would not have been able to achieve any of them.

In terms of my health, my itching has gone – which is nothing short of a blessing. You have not experienced itching until you can’t feel a pen you are holding in your hands because the itching coming from them is blocking out all other input. That is itching.

But it’s gone now! Wooo!

I still get tired, as I mentioned, and every now and then I will lose my appetite for a week or so. This is, I believe, infections in my bile ducts.

I can cope with all of this.

But what I am sure you are all aware of as the worst part of my illness is the pain. This is something that would only happen for a day or two each month at the beginning of this year. Now, and over the past couple of months, it has been constant. I have to take painkillers every night, and while I try to make light of it, it hurts. A lot.

This is where the ‘Ask Mark Anything’ comes from on Twitter and Facebook and why sometimes I will chat rubbish at all of you. I am trying to distract myself. So, thank you for putting up for this.

The worst part of the pain is that I am so worried that I will become addicted to painkillers. That really scares me.

2012 really has been about getting my life back. I am now in a position where I feel I am getting back on track now. And this is due to you. If you are reading this, and have made it this far, you are undoubtable one of the people who I have relied on.

Honestly, I couldn’t have done this without you. You rule.

It may be soppy, and not the done thing, but I love you. Every now and then a friend will talk openly and honestly about what they were thinking when I was ill and I am so glad you were there but I am so sorry I scared you all like that.

I’ll try to avoid doing it again.



I really don’t have any other way of describing how I feel at the moment other than anger. Which is a very unusual sensation for me. In fact, I can’t ever remember being angry before. I have been frustrated, which is similar, but I don’t think I have ever been angry in my life until now.

I think this is mainly due to me being a fairly easy going person – or I at least hope I am.

I’m finding it hard to describe in words what this feels like: It’s like there there is both this need to curl up into a tight little ball and explode at the same time. I want to be both taut and loose. Hard and soft. But none of that is achievable.

‘What am I angry about?’ you may ask.

Well, it sounds very teen-angsty, but life. I am angry about what happened last year. I am angry that I had to feel that way. I am angry that I had to stop work. I am angry that I still feel bad. I am angry about everything to do with it.

I had plans. Maybe not hugely grand ones, but plans nonetheless. Onwards and upwards – both career-wise and life-wise. Get a house, do it up, eco it all out. Go on a honeymoon. But that’s all gone out the window now.

I am trying my best to recreate some new plans. To take my life in a new exciting direction but everything is marred by this ‘possibility’ hanging over me. And it just pisses me off.

I’m not going to go into my new plans here. I will one day. Promise. Those who know me fairly well probably have a good idea. But right now they are scared little plans, they need to be nurtured before they are ready to stand up to the gaze of everyone else.

So, I’ll go back to sitting at my computer screen, trying to plough on with some work while trying to work my way though this new emotion.

Any advice is appreciated.

2011: What a year

I’m going to do one of those annoying looking back at the year posts, so you have been warned.

The year started with nagging. A lot of nagging. I had yet to book my yearly colonoscopy and I also hadn’t organised or sent out any invitation cards for the  civil partnership.

Calling in some favours from friends got the latter sorted and a call to the docs sorted the former. Soon enough people had been invited and I had a camera shoved up my bum – Note: The people were invited to the civil partnership, not the colonoscopy. There are already too many people involved with that if you ask me.

Everything got sorted for the civil partnership and it all went well. We both had a great day and words can’t describe how happy I was with the whole thing. I know that the phrase ‘happiest day of my life’ is cliched, but it is true. I was with the person I love more than anything (even pizza) in front of family and friends. Couldn’t ask for more.

But health issues were starting to crop up. In the couple of weeks running up to the big day I had started getting really tired. Also, when I breathed deep I was getting this shooting pain across my stomach. This, coupled with some yellow tingeing in my eyes was slightly worrying. I popped along to my GPs and had they took some blood to be tested.

They warned me that I could need to go into hospital but there was no chance I was missing our big day. On the Monday after the main event I got a call from the doctors saying that my bloods were much higher than expected and that I needed another blood test to see if that was just an error or random peek.

In the following week I had the new test – it was even higher – got more tired and left work early for the first time in my life. I was also starting to feel very sick all the time. I passed the blood results on to my specilists at the JR in Oxford. That night they phoned me and ordered me into the hospital straight away. They wanted me in that night.

I went, reluctantly, the following lunchtime as I had some work that I needed to do.

Form this point, things went down hill. I started to get yellow, got more ill and started losing weight rapidly. I also started itching, although this wasn’t as bad as it could have been.

In the first 6 weeks of my married life I spent half of the time in hospital.

I had many, many, many tests in the following months, eventually being told that I needed a transplant and the process for assessment was started. Unfortunatly, by the time I got to the assessment my health had improved and I have not been placed on the list.

But, and this is a big but, that paragraph above really doesn’t describe what it was like. I went from feeling fine at the beginning of May through five months of feeling very, very, very ill. Looking back, it feels like half of this year has been stolen from me.

But, since then, my health has improved. I am not perfect, I still get very tired and have pain, but I am heading back to work.

I have carried on with my ‘fun’ work. I am working on a second series of Supermarket Matters and we even managed to write and record two holiday specials Grab’n’Go-Ho-Ho and Ayld Lang Syne. Check them out on:

I also managed to get a chance to get on stage and do some stand up. It was an awesome experience and I have another gig coming up to try and take what I have and actually make it funny.

Now, you may be thinking that I have had rather a crap year. But no. Honestly. That one day – the day where I got civilised (it’s not ‘marriage’ as, y’know, the Government don’t like gays that much) – makes up for and far surpasses all the bad. I can honestly say, that even though a fair amount of bad stuff has happened this year, this is still the best year of my life because of that one day.

It may sound soppy. But it’s true.

Back to work

I realise that I am long overdue in adding the last part of my liver transplant out-patient assessment to this blog – but, to be honest, being told that I do not need to go through one at the moment has completely changed my mindset. Right now PSC and all it entails is not at the forefront of my brain and writing up that last day will drag it all back up. I will post it at some point, but I hope you understand why I haven’t done it yet.

But on to this post – Back to work! I have just got in from my first half-day back at work. Real work – work I get paid for – work with other people around. You have no idea what this means to me. Having been ill for a long time and being off work for 6 months has been a big challenge for me.

I am a ‘people person’, I need people around me to talk to, to laugh with, to make me feel comfortable. To not have this has – to put it in a nice way – sent me slightly strange.

I don’t like mixing work with this blog too much, so this is really all you are going to get. But I just needed to post something to say how happy I am to be back to work, even if it is on reduced hours.

My working habits for the next 3 months, if all goes well will be as follows:

  • 4 weeks of working two half-days per week
  • 4 weeks of working two full days per week
  • 4 weeks of working four full days per week

Fingers crossed I will be able to ramp up my work responsibilities and time commitments as needed without going yellow again. We shall see.

Stay tuned.

I wandered back up to the hospital on Tuesday 15 November for the first day of the second part of my assessment. I didn’t have a lot of information about what would be happening, mainly because I didn’t know if any further investigations were needed as indicated by all the tests that happened on the first part of my transplant assessment.

I got there at 9am again and Joe had a coffee and scone – this seems to be quickly becoming a tradition. At 9:30am we made our way back to to the transplant assessment area where we met a different transplant coordinator to last time. I can’t remember her name but she was a lovely as Ann. In fact, my experiences with this person and Ann have shown me that I don’t need to worry about contacting them with anything. They all seem lovely.

This part of the assessment also had two other people undergoing it at the same time as me, but they were different people to who I had been through the first part with. Joe and I sat down with them and got chatting. They were all lovely people.

The coordinator explained the order of the day. She was going to do some transplant education with us and then we would meet the surgeon. Then, following lunch, we would meet with a consultant hepatologist. The point of these interviews were to allow the consultants to get any information they needed from us and then to give their professional opinion as to whether we should go ahead with putting me on the list.

All of the information would be taken to a transplant group meeting and discussed and then the whole team would come to a conclusion as to whether to add me to the list or not and if so where on the list I should be placed.

The transplant education was really interesting. I am happy that I have the mental ability to distance myself from pretty much anything as some of the information was very frank and scary. Lots of talk about what actually happens in the surgery and possible side effects.

It was good to have someone to talk to who had obviously taken a lot of patients through the process from beginning to end.

After this I went in to see the surgeon. This is where it all started to get interesting for me. The surgeon said that he did not think that currently I was a candidate for transplant. It was his opinion that it was too soon to be considering me for this.

He mentioned my UKELD score, which is a calculation they do on some blood test results. You can be added to the transplant list when your score is above 49. Mine was currently 44. It is possible to be added to the list with a score lower than 49, but this has to be fought for by various people. The surgeon explained that a score of 44 was fairly normal for any adult.

I asked him about my results from when I was first referred, he said that my UKELD then was well above 49 – I believe he said it was 56. To put that in some perspective, the boundary to be placed on the higher priority list is 54. It was commented that if my last two blood tests didn’t have my name on them he wouldn’t believe they were from the same person.

I left the meeting with the surgeon with him stating that he wasn’t going to vote yes to having me put on the list.

I went for lunch after this and talked through everything with Joe. I felt very odd having been very ill for 4–5 months of this year and having been told by multiple doctors that I needed a new liver that all of a sudden now I didn’t.

Joe and I agreed that no matter what happened we would try to see this as a positive.

After food (which I got a voucher for – wooo!) we went back up to the transplant assessment area and waited to see the consultant hepatologist. Luckily this was going to be the wonderful Dr Ferguson. The surgeon had told us that Dr Ferguson and him sometimes disagree on when to add people to the list, so I was interested to see what he would say.

Dr Ferguson agreed with the surgeon. It seems that I have recovered to such an extent that at the moment the risks of a liver transplant do not outweigh the benefits for me. Although it was pointed out that I still have advanced PSC and my liver has been damaged. It is now a question of when, not if, I get added to the list.

He did admit that this does leave me in a limbo state as I do have some symptoms and will continue to have them but I am not ill enough to get the one treatment. I went through what I was experiencing with him and unfortunately there is nothing they can do about the pain I feel (which is fairly constant now) or about the tiredness. I just need to deal with these myself.

He did say that as I have recovered that I am able to do as much work as I feel I can. I am looking forward to getting back to work, maybe working part time and seeing how many hours I can cope with without just falling asleep.

The way he explained what had happened to me was that in an autoimmune disease the immune system does not attack constantly. Something – no one knows what – triggers an attack and then something else – again, no one knows – tells the immune system to stop. While my liver was being attacked I got really ill. Now that it has stopped I am weaker than I was before it all happened but the worst of it is over.

The way I like to think of it is as if it were a tidal process. When the waves come in, I am very ill and damage is being done. When the tides go out I am left worse for wear but better overall.

I now just get to wait for the next wave, which could come tomorrow or in 10 years time. I just have to wait and see.

It was agreed that I should finish the assessment and come back for the final day on Wednesday. This would mean that if I got ill again within the next 6 months I wouldn’t have to go through the process again.

So, Joe and I went home that night knowing for certain that I wasn’t going to be added to the list. A lot of information was swimming around in my head which was causing a lot of mixed feelings. In some ways I felt upset, in others I felt happy. Mainly though, I felt tired. So home to sleep it was.


If I had to describe the one main feeling that I have at the moment it would be the overwhelming sense of ‘limbo’ that I feel. I don’t seem to be in one camp or the other about anything. A couple of examples of this are below:

The list and my health

This seems to be the biggest source for limbo at the moment. There is the big question of ‘Will I get put on the list or not?’ As I am unsure of the whole process of how this decision is reached I feel powerless – I am really one of those people who needs to know as much as they can about something that impacts their life.

I was very ill for four months. I was very yellow and I couldn’t eat without wanting to vomit. I got very tired very easily and I was incredibly itchy (although the itch was controlled by some medication). Now, I am still ill, but not to the same extent. I am only yellow in the very corners of my eyes now and can eat without feeling like I want to puke. However I still have bouts of feeling itchy – for example, this morning it was driving me nuts – and I still get very tired. There is also now this constant pain coming from my liver, like something inside me trying to push its way out.

Now, will the doctors look at me and go, ‘Right now you aren’t as bad as you were, therefore you don’t need to be on the list’. Or will they look at me and go, ‘While right not you aren’t as bad as you were, we know that it is impacting your life – you can’t work full-time and so on – and we have some very lovely pictures of your insides which show how bad they are. We’ll put you on the list now as from this point on, you will only get worse.’

I just don’t know.

From my personal point of view, I think I would rather be on the list, even if I was put on at the very bottom. That way if there is a liver that would suit me and no one else it would at least go to me rather than get incinerated. This year has been mostly horrible because of my stupid liver. I haven’t been able to go on my honeymoon, I have had to miss lots of work, I have had to rely on the other half to keep us afloat financially, I have been so ill and so on and so on – and the list does go on. I want a new start and I can’t see that happening when most days I get tired very early and all day every day I have this pain in my back where my liver sits.


I like working. I like being around people. I want to go back to work.

While I know that a full-time job would be out of the question, I think that I could work part-time. Maybe starting with a couple of days a week and seeing where we can go from there. But, I don’t know for certain that I would be okay. This is a guess. This is something that I will have to test out with support from my workplace.

So not only am I in limbo on how much work I can actually take on, I know that I can’t go back to my old role. My old role was a line manager of an editorial team. At the moment, they have an acting manager who is doing a brilliant job. I can’t do this role part time. No one can. So, there is a limbo feeling about what I would be doing if I returned to work.

There is also another limbo feeling around what would happen if my health started to get even worse. Working part time would probably allow me to stay working longer than if I were working full time as I would be able to rest longer between stints in work. But I am also really bad at taking time off work when I need it. I know there were times before I went on long term sick where I should have been at home but I went in anyway.

And then there is the element of what projects I could work on. It would need to be something that could be dropped or handed over to someone else at short notice – which is generally not why I am employed. My skills centre around social media, web accessibility, usability and production organisation and management. These are skills that are very rarely located in more than one person at an organisation. Companies don’t tend to have a ‘web and production optimisation’ team.

So there is a triple limbo feeling here: Am I able to return to work, what would I do at work if I went there, what would happen if my health started to get worse?

My writing

I love my writing. Those who know me should know that I like to write – generally funny things but I also have a soft spot for sci-fi. If you follow me on Twitter – or even in real life – you will know that I already have issues with self-confidence when it comes to my writing (possibly even self-confidence in general – but that is a whole other blog post).

Being off work ill has allowed me to spend some time on my writing. I have rediscovered how much I really do love it. So much so that it is all I really want to do – well, maybe that’s a slight lie. It’s something that I really want to be paid to do.

The limbo comes in here that before getting paid to write you have to put in a lot of unpaid hours, get noticed, work for free, do well and then work for very little. If you manage to go through all those stages you may end up as the very very small percentage that get paid a decent wad of cash to write. I am still in the very early stages of this. Writing for free.

If I get better (spontaneously – ha ha – or through having a transplant) I would rather spend my time writing than working the normal 9-5.

I guess, either way – me staying very ill and writing or me going back to work and writing in my spare time – I have to generate interest in what I am doing. So here it goes, if you didn’t know, I have created an online podcasted sitcom. It is 8 episodes long and very funny. I produced and edited the show and wrote two of the episodes. The other 6 episodes were written by some very funny friends of mine and it was all acted by some amazingly talented people. Why not give it a listen?

You can listen to it through:

Monday 31 October – the day I’ve been waiting 4 months for. I was going for the first part of my liver transplant assessment. So, letter in hand, I drove the the Queen Elizabeth Hospital in Birmingham for a day of poking and prodding. The day went as follows:

8:45am: Arrive and relax

I had made it in time. My husband and I stopped in the Costa cafe for him to have a coffee and a scone. I was far too nervous to eat or drink anything.

9:30am: Report to the imaging centre


  • Liver ultrasound
  • Chest x-ray

I was directed to a waiting room and did what everyone does at hospital: Wait to be called. I thought I was just here for a chest x-ray, but I was told when I reported to reception that I was to have a liver ultrasound as well.

The liver ultrasound was first. These are easy. Just lie there while a lady rubs cold gel on you. I was told that even though I had eaten breakfast (something I apparently shouldn’t have done although no one told me) that my bile ducts were not as dilated as she would have expected. This fits with my PSC diagnosis as that would have made them smaller.

She also mentioned that the surface of my liver was slightly rougher than it should be – suggesting that there has been irreversible damage to it (which is expected at this stage).

After this it was the chest x-ray. This was even easier. Take off my top and stand in front of a square on the wall. No problems.

10:45am: Report to the transplant coordinator


  • Pee in a pot

Here I met the lovely Ann, one of the Liver Transplant Coordinators working at the hospital. She passed me a pot to piss in – literally – and asked me to wait for a while. They were currently assessing another potential transplant patient and would be with me as soon as they could.

It seems that they take groups of people through the assessment process at the same time.

11:15am: My turn to be assessed


  • Blood pressure
  • Pule and oxygen levels
  • Height
  • Weight
  • Girth
  • MRSA swabs
  • Ward spirometry
  • Blood tests

This bit took a fair amount of time, just because of the shear amount of tests to get through.

The only tests of note were the following:

The blood tests – Now, I am use to giving blood samples;  just not on this scale. They took 17 vials of blood. It would’ve been 18 but the nurse who was seeking people to take part in a study had wandered off. Here’s a picture of my ‘blood tray’ before they took anything from me. Look at all the vials:

Look at all the blood samples I had to give!

MRSA swabs – These were odd because they were self-adminsiteded. I was handed three long swabs one at a time and had to swipe the insides of my nose, the back of my throat and my groin. Very odd.

Ward spirometry – This is a test to see how well my lungs are functioning. It was easy, if a little weird. I had to take a deep breath and then blow on a tube as fast and hard as I could while the nurse shouted, ‘Blow, blow, blow’. Even when I thought there was no more breath in me, I was still being shouted at for more. A little device then drew a graph of my lung function. I did this three times in total.

11:45am: A group chat with the transplant coordinator

The lovely Ann sat down with us and went though what was left to happen on the day and why we were there. She was happy to answer any questions about any part of the process. She gave us each a 80 page transplant document. Essentially it is an ‘all you need to know’ document for us to refer to. Or, as I like to think of it, An Idiots Guide to Liver Transplants. It even has diagrams:

Diagram of a patient in Critical Care Unit after a liver transplant.

Noon: Private chat with the transplant coordinator

This was the coordinators chance to ask me any additional questions she needed to for her files. I confirmed that I only had one other horrible disease – my Inflammatory Bowel Disease.

She also asked me what had brought me there, so I went though all my symptoms with her. Listed out they sounded really pathetic:

  • Huge tiredness
  • Going yellow
  • Itching
  • Spending 80% of the day nauseous
  • Huge weight loss (4 stone in 2 months)

As a list it doesn’t look that bad – especially if you add in that in the past three weeks the last four of them have mostly gone away (although I can feel them coming back again today).

Annoyingly, I completely forgot to mention the pain that I get. I had to go back afterwards to mention that. How clever am I? Forgetting a whole symptom.

The coordinator also took my husbands details and confirmed with him that he would be my primary carer after the transplant. He will need to take some time off of work to care for me when I get home after the transplant – at first anyway. I’ll be able to mostly look after myself, but will need someone around just in case.

He said he would do this – this made me happy.

My parents are also listed as other people that we can rely upon if needed. The coordinator suggested that my husband will need a break from caring for me at some point – so it looks like I’ll go visit my parents and he can go visit his or something like that.

12:20pm – 1:30pm: Lunch

Yum yum yum. Having not eating a very big breakfast I was actually very hungry. We headed to the hospitals very posh new restaurant. I had a cheese burger which was cooked in front of me; and I had chips. I even managed to nearly eat it all too.

1:30pm – 2:00pm: A quick regroup with the transplant coordinator and a short trip

We met with the coordinator again who told us that we were going off for two more tests and then we were done. Wooo! One of the nurses led us to the cardiology department.

2:00pm – 2:40pm: Cardiology


  • Electrocardiogram
  • Echocardiogram

Luckily I was the first of the three transplant people to have these tests. Nice bit of luck there. First I had the echocardiogram – kind of like a ultrasound of the heart.

Echocardiogram – This was probably my lest favourite of all the tests. I had to sit in this really awkward position for about 20 minutes. While I was quietly cursing my legs for being so cumbersome the echocardiologist attached some electrodes to my back and then essentially hugged me while pushing the ultrasound device into my chest. Apparently she was checking the structure and health of my heart which was done through her being able to see what was happening inside it and also switching on the sound so she could her the blood flow through the valves.

Electrocardiogram – This was by far the easiest test. Lie on a table, have cables stuck to you, wait 20 seconds, take cables off. All done and dusted. They gave me the printout of my heart beat and sent me to deliver this back to the transplant coordinator.

Interestingly, I seem to have a slightly weird heart. I have what is called ‘saddling’ which – I think – is where one of my heart chambers doesn’t empty completely on each beat. On the print out this shows as one of the lines not returning all the way to the baseline, instead it swoops down and then up into the other beat making a ‘saddle’ shape. I explained that two other doctors have noticed this and it is considered ‘normal for me’, which seems to be about as normal as I get.

3:00pm – Home time

Well, escape from the hospital at least. My husband and I took the chance to go see some friends who had recently had a baby. It made for a lovely afternoon.

More assessment fun

I still have two days of the assessment to go before I find out if I have made the list or not. These are likely to happen on 15 and 16 November. These days, from my understanding, will be my chance to meet the whole of the transplant team and also meet some people who have been through the transplant already.

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.