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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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This blog has been fairly self-involved. I am quite happy to admit that. It has been a way for me to organise my thoughts and get them out of my head.

But one thing that i have been learning recently is that my PSC, and in fact my IBD as well, effect other people too.

Family

It used to be that every couple of months my brother, my father, me, my partner and some selected friends would go on a lads’ weekend to Cardiff. On these weekends we would eat curry, drink and have a laugh.

We were never violent, we are all happy drunks, so we would just wander around laughing and having a good time. We have not been for a while now. And it is unlikely to happen again.

Every time my dad and I am together we talk about it and suggest organising another trip but my reduction in drinking, to the point of not really having anything ever, has meant that this event will never be the same. And, to be honest, I do not think it is something that I’d like to do anymore.

Being the non-drinker really isn’t fun and I am sure having me around while they are all getting merry wouldn’t be their first choice either.

My partner

My partner worries. He is a worrier. In fact, I believe more of his brain has been set aside to worrying than mine has been to all of the work and studying that I’ve ever done in my life.

It is because of this that I try to keep him shielded from a lot of what i am going through. If I show that I am worrying then he’ll worry even more.

I make a point of going to the hospital on my own. I make sure I have all the facts before I let him know anything. I have adopted the phrase ‘nothing to worry about’ as a personal mantra.

As you may know from my last post, my blood has been a bit stoopid recently. This has, to be quite honest, scared the crap of me. Talking to our doctor friend, who is usually the voice if reason when it comes to things to worry about, didn’t really help when he went a bit quiet and sounded very concerned.

I made the mistake of letting my partner know this.

This other morning while I was enjoying having the whole bed to myself while drifting in and out of dreams, Joe was up and getting ready for work. I remember him coming in, placing his hand in my head and walking away.

In my semi-conscious state I just presumed he was checking to see if I was awake. Not so.

He has been so concerned that I may get an infection and become really ill that throughout the night, whenever he woke up, he had been checking my temperature to make sure that I didn’t have a fever.

I just… Don’t know what to say or write about that…

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Image by Heo2035 / Creative Commons

So, it’s decided; I have stoopid blood.

As I have recently moved, I have signed on at a new GP surgery. After having gone through the what-was-meant-to-be-short meeting about my medical history they decided that I should have a blood test.

Now I am use to these blood tests. I have them all the time as the meds that I am on warrant regular testing. Usually at least once a month to make sure everything is staying where it should and nothing odd is happening. About 9 months ago these monthly blood tests were changed to quarterly ones as in three years my blood results have remained mainly stable. So I wasn’t expecting anything bad to happen in this one.

I did the usual. Wandered in to town in the morning. Had a chat with the nurse about where my good veins are and had the blood taken. No problem. I’ll get the results within a couple of days.

That evening I was on the phone to a friend and I had another call come in. It went to voicemail and I didn’t think anything of it. Most likely it would have been a call from my dad asking when Dr Who was on. I finished up with my friend and listened to the message. What I didn’t expect was the head of the surgery calling me, out of hours, telling me that I must stop one of my meds immediately.

He was so concerned, in fact, that in a 49 second message he told me this 3 times.

It appears that after 3 years of doing a normal, run if the mill job my immunosuppressants have decided to work overtime. Maybe they unionised or something.

What this means is that my immune system is so bad at the moment that the slightest infection, a cough or a sore throat could kill me.

Having reduced my medication I can now say that while my results aren’t in the normal range yet, they are getting better.

I still need to avoid being around children and it would probably be beneficial to stay out of the open plan work office to ensure I do not get exposed to many germs, but hey ho. Life must go on, which means work. Not that I can complain too much, since the move I have been allowed to work from home 4 days a week.

So, if the next time you see me I do not shake your hand or hug you, please do not take offence.

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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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