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Posts Tagged ‘liver’

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.

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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.

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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

Tests

  • 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

Tests

  • 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

Tests

  • 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

Tests

  • 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.

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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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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, it’s been a while since I was diagnosed with PSC and I’ve been through a number of stages.

Now I haven’t always been a fan of the seven stages of grief and it’s blanket application at all situations but I definitely experienced the following:

Denial – Not in the sense that I refused to believe I had PSC but more that I refused to believe it was anything to be concerned with. PSC just meant that I had to take more pills.

Fear – Again, not in the way I expected. I was fearful for what could happen. How would my other half cope if I got really ill? What if I became too ill to work?

Acceptance – ‘Yeah, so, okay. I have PSC. What about it?’ But this soon developed into it falling to the back of my mind and then, just dropping out of my thoughts all together.

I would still read PSC forums; maybe even post on them. But it wasn’t really related to me. I was fine, no real symptoms, others had it worse.

That was until I had my latest letter from my specialist. Included in it was the details of all my latest blood test results.

Looking at the results there on paper. In writing. Telling me that my liver results are well above normal. It hit me:

While I may feel okay. While I can still go to work, have fun and enjoy life. I am still ill. My liver is not happy and that will only get worse.

My last results

Alkaline phosphatase (ALP)

Normal range: 20 – 140.

My results: 398

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Ahhhh. Alcohol.

  • A glass of good wine.
  • A pint of European beer.
  • A sip of a good Whiskey.
  • A bite of a Brandy truffle.
  • A slurp of a Sherry trifle.

Whatever your tipple, a little bit of alcohol is a good thing. I’ve even heard that it can be used to sterilise wounds. What a wondrous drink; so much so, that it is often just referred to as just that – Drink.

But tell people that you have problems with your liver and the first thing that they advise you to do is give up drinking. I wouldn’t mind so much if these people were qualified doctors, but they are just normal people. Like me.

There seems to be two schools of thought on alcohol consumption for people who have primary sclerosing cholangitis.

Avoid it as it may* possibly* in some circumstances* maybe* make it worse. This view is taken by patient.co.uk and the American College of Gastroenterology

*Note the modifiers.

Or:

Lower your intake to a level which can be described as ‘social drinking’. This view is held by the lovely Dr Chapman – A UK leading expert on PSC.

Having been told by my specialist that I can drink socially, that is what I am doing. But does the fact that a leading UK expert say it’s okay stop people commenting? No.

Of course, that does lead to the question: What is social drinking?

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