A trip to Edinburgh

So after being released from Dr Gray's, and after two more blood tests where my ALTs were not really doing very much, a decision was made for me to be admitted to the Royal Infirmary of Edinburgh for a Transjugular Liver Biopsy to be carried out.

My "admittance" to RIE was a joke. I was told to be there for 10am in the morning. On arrival I was told there was no bed for me and they didn't know when there would be one - other than some time that day.

I spent the day getting sorer and sorer and tireder and tireder. The room they put me in to wait was uncomfortable and not appropriate for sleeping. I ended up in the cafe where I could at least lean over the table which was a position which relieved the pain for me. By the time they phoned me at 3.30pm to tell me the doctor wanted to start my admission, I had been in tears several times. The whole situation was ridiculous.

So the doctor says "how are you?" and I burst into tears. Couldn't hold back the frustration and distress I was in. It was awful.

Then she says "I just need to take some blood" and I say "good luck with that one". Bless her, she told me she was pretty good at getting blood so don't worry about it. I said fine, but I'm just saying, its been a bit like getting it out of a stone.....

And then three more holes later, she's managed to get less than 1ml of blood out of me. Handed over to her colleague, who spent a while looking before stabbing and also used a butterfly needle instead of the canula the first one had tried to fit.

Then miracle of miracles, a bed was ready for me. And off I went, exhausted and emotionally drained - again.

The next day, I got my breakfast, and a visit from upon high, aka the consultant, and then I hung around waiting and waiting for my biopsy.

The biopsy itself was interesting. In a transjugular biopsy they insert a long needle into your jugular vein, and feed it down into your liver and remove a piece or two of tissue for analysis. I had to have this instead of a regular liver biopsy because my blood wasn't clotting properly and there was a risk of bleeding. With the transjugular option, any bleeding will be into the vein mainly so its a bit safer. I was awake for the procedure, although sedated and it was just a bit odd. There was a moment when I wasn't sure what was going on when my shoulder hurt a bit, but apparently that was when they actually removed the tissue, as the nerves from the liver are linked to the shoulder. Weird, but not painful or anything.

I made a good recovery and was discharged the next day - although I did have to wait for hours as my bloods weren't playing again.

The results of the biopsy weren't supportive of their diagnosis of Auto Immune Hepatitis. Apparently, my liver was cholestatically inflammed, and there was no scarring or other damage. Apparently with AIH, most people have some scarring by the time they have a biopsy.

So that was quite good. Away I go home, bloods twice per week and see what happens.

At this point my ALTs were around 913 and my bilirubin was still up over 100.

Incarceration

On the Thursday, I stayed in my bed most of the day and slept for almost all of it. Mum came home from work around 4pm and I got up. Within an hour though I could barely stand up. Mum thought I was dehydrated from not drinking enough (hard to do when you're asleep) so phoned the hospital for advice. She decided to take me through to the Acute Medical Assessment Unit where I had spent the Wednesday.

When we got there, around 5.45pm we were told we'd have to wait to see someone from A&E as the AMAU closes at 6pm......

I don't really remember much of that evening. I was one bed along from where I had been the day before, and I had bruises on my arms from where they had taken blood on the Wednesday. An A&E nurse and doctor came to talk to me, poked and prodded again. Then they decided to take more blood. Sounds easier than it was....

The nurse tried and failed, the doctor tried and failed. Mum was prodding around my arm and decided she'd have a go. She missed the first time but got blood on the second go. That was the last time for more than a week that someone took blood from me and didn't leave a bruise.

There was some discussion about transferring me to Aberdeen as technically Dr Grays weren't admitting, but as it was nearly 11pm and I was supposed to be seeing the consultant at 9am the next morning, the oncall consultant agreed I could be admitted so around 11.30pm I was moved to Ward 7, set up on a drip and that was me for two weeks.

I spent two weeks on the ward, having blood taken daily for tests. My first 3 or 4 days I was on a saline drip to rehydrate, but other than that, there was no other treatment. Only blood pressure and temperature and blood oxygen level checks every 8 hours or so.

Hospital is not a restful place. They wake you up at 6.30am, do your obs, feed you at 7am, come back about 7.45 and discuss your washing options, then after you are washed and dressed and settling back in, the cleaning staff come in and have very loud conversations across the room whilst you are trying to recover from the exertion of having had a shower. Then after they go away, the nurses come in looking for something to do (the ward was nowhere near its full capacity due to limited admissions as a result of an infection outbreak earlier in the year). 12noon is lunch time, then quiet time for an hour, then visiting, then tea time, then more visiting and then 10pm they do the drugs round and switch off lights. No peace really.

Worst of all was there was no TV. Now normally this wouldn't bother me too much, but it was Wimbledon fortnight and I couldn't see it! Eventually the doctors gave in and let me watch the semi finals and the final in the Day Room which had been taken over as their lounge as another ward was being refurbished.

Being in the hospital drove me mad. Looking back, I think I was in the right place, but the consultant who I had seen initially was on holiday the first week I was there so other doctors were looking after me. And they were doing what they did under instruction from the Scottish Liver Unit at Royal Infirmary of Edinburgh because I was a mystery.

I didn't have hepatitis a, b or c. I didn't have any cancer indicators. My ultrasound had showed my liver to be slightly enlarged but nothing else untoward.

They decided I needed to have a liver biopsy but because my blood wasn't clotting properly, it would have to be done via my jugular vein to reduce the chance of me bleeding out during the procedure. This is a pretty specialised procedure so the closest place it could be done was RIE.

And they didn't have any beds. For nearly two more weeks.....