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Archive for the ‘liver transplant’ Category

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.

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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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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.

Work

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:

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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 (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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