The Biopsy

I have been a member of a few Auto-Immune Hepatitis (AIH) support groups for quite a while. These are fantastic networks that provide great support for patients with AIH and there are loads out there for various different conditions. 

Most patients with AIH will have had a liver biopsy at some point. Primarily because they are one of the most accurate diagnostic procedures for AIH. I have had a few since I was diagnosed to measure the level of damage to my liver over the years. Once my liver was confirmed as cirrhotic, there were no more biopsies as there was essentially no point in having them done. The damage to the liver was beyond repair and whilst the treatment was most probably slowing down any damage, it was unlikely to improve. These biopsies were all undergone the traditional way, i.e a sample of the liver was taken by entering through the rib-cage. This is most often carried out under sedation with local anaesthetic and involves a needle being inserted into the liver to take a sample of the tissue. On the whole, it is a relatively painless procedure however, as with all types of procedure, there can be complications. One that I once experienced was having a nerve caught by the needle which caused considerable pain in my shoulder known as referred pain. 

The biopsy that I was to have after my transplant is known as a transjugular biopsy. In this procedure, a tiny biopsy needle is inserted into a vein in the neck and using ultra sound as a guide, is threaded down the vein and into the large vein in the liver, the hepatic vein. From there, a sample of the liver is taken as in the regular biopsy. This is repeated 3-4 times until enough useable samples have been gathered. 

I was terrified. Unfortunately I had read a few horror stories of these biopsies through the support groups and had got myself really worked up about it. When I was told I wouldn't be able to have sedation, I began to get quite upset. I didn't have any family with me at this point to hold hands with or to be strong in front of or cry in front of. So I cried anyway. 

The team were incredibly reassuring and reminded me of the importance of having the biopsy done and getting the results back quickly. I dried my tears and went in, even managing a few jokes here and there.

As the team were preparing for the biopsy, I heard mention of my platelet count. Apparently it was 90. I was in shock and thought I must have misheard them. Pre-transplant, my platelets ran at around 20-25 so at hearing 90, I figured they must have said 19 but was reassured otherwise. I was slid from my bed onto the biopsy table. I then had a sort of tent attached to my neck which covered my face but didn't touch it. This meant I wasn't able to see what was going on - definitely a good thing!

Where the 'tent' was attached to my neck, there was a small area through which the procedure would take place. I was then given an anaesthetic injection into the vein that would numb the area and the vein itself. Once that had set to work, the procedure could begin. I felt a pressing sensation on my neck that was a little bit uncomfortable. I then felt the strangeness of the biopsy needle moving through the vein. Finally, there was a click and again, a small sensation of pressure on the liver and the needle was removed. This was repeated another few times so that they could ensure that there were enough samples of good enough quality to assess. A small stitch was used to close the entry area and I was ready to go on my way.

The whole thing took less than 20 minutes and I was back on the ward with a small square plaster covering the biopsy area. I was advised to stay flat in bed for the next 4 hours to prevent any bleeding from the biopsy area.

Overall, the experience was nowhere near as horrific as I had expected. In fact, it was mont bad at all. I wouldn't say it was something I enjoyed or that I would like to have done on a regular basis, but I was prepared for an awful lot worse. 

I hope that this account puts some people at ease.

The tiny steri-strips that can just about be seen on my neck are where the biopsy went in and this is the only sign that it took place.

If anyone would like to ask me any questions about this procedure, please don't hesitate to ask and I will do my best to answer.

For further information about liver biopsies, please take a look at the following links:

British Liver Trust: Other Diagnostic Procedures

Guys and St Thomas's Guide to Liver Biopsies

Keep Smiling :)

And it was all Yellow...

Wednesday 4th November. I woke up feeling rough. Not rough like sniffly, stuffy nose rough; rough like I couldn't move.

The lovely physios came round to see me quite early and I said that I really didn't feel like getting out of bed and that I had probably overdone it the day before by spending most of the day sitting out of bed and walking around. From my experience of these physios, they usually do quite a bit of encouragement to try and get patients out of bed, particularly if they've already shown signs of being quite mobile. On this occasion though, they were quick to agree and said they would drop by later in the day to see how I was getting on. I was completely and utterly zonked. The doctors came round as usual and took bloods. I managed to sit up a bit and watch something on my iPad but I think i kept drifting off. 

At some point during the morning, the doctors started taking about a biopsy and trying to fit me in that day. To my knowledge, it wasn't unusual for a biopsy to be requested. I started to hear mutterings of slight concern. My bloods results were doing well on the whole but my bilirubin had taken a large spike which was a bit unusual as usually all of the liver function tests go awry if there's a problem. 

At one point the student nurse came round to see me. She was a great laugh- she seemed a little bit scatty and was always very talkative. She came round and dropped a bit of a bombshell. There had been a lot of fussing up to this point but I though this was completely normal until she told me that everyone was really worried about me. She then told me that I was looking very yellow... I hadn't been up to moving around so hadn't even seen myself in the mirror up to this point. Then I panicked. I took a picture of my eye to see how yellow I was and it wasn't a great result.

I've seen worse but a week after transplant, I was certainly hoping for much better than that!

I can't quite remember what order the rest of the day happened in. I know I reluctantly had some lunch. After lunch, I had visitors. The wonderful Sarah who I haven't seen for years but went to university with came to say hi. We had a really lovely catch up but the poor girl spent most of the time crying. I think this happened before I'd taken the photo of my eye as I didn't realise myself how bad I looked. Caius was being careful not to overload me with people and had a coffee with Abi whilst Sarah was with me. Once Sarah had gone to work, Abi and Caius came up and I decided to show off by walking myself to the toilet and back. As I came back, one of my drain bags must have overfilled and it leaked all down my leg, soaking my gown and leaving a very embarrassing puddle on the floor. I felt completely humiliated and burst into tears. I was exhausted from just a short walk and was now covered in nasty drain fluid and standing in the middle of the ward. Thankfully, the lovely nurses were on hand to clean me up and get me back into bed and Caius and Abi were good enough to have a little wander whilst I was being cleaned up.

They got back and I enjoyed more catching up. Abi had travelled from York to London to come and visit and had arranged to stay for a night at her parents so she could check up on me again.

I also had a visit from the delightful little Katie who will always and forever be, little Katie. She's like a little sister to me and I have watched her grow from the girl who stood on tables in cafes to sing to everyone, to a beautiful, confident young woman who is finding her place in the big city. 

I seem to remember that it was also on this day that I took my first look at my wound. The surgical team had been checking on it daily but I hadn't yet had the courage to take a look. Surrounded by friends, I decided it was time! It was a shock but i was also fascinated by it. I had been stapled up so there was something very Frankenstein-y about it. Looking at it, I couldn't quite believe that it was the same body from a week before.

The bruising across my lower abdomen had been there for some time and was caused by my insulin injections. The round thing on either side were my drain bags. When major surgery takes place, a lot of fluid is put into the body and needs to come out somehow... in this picture, I have recently had fresh, clean bags attached.

I think it was after dinner that I was taken off for my biopsy. Having heard mutterings all day about it with some debate as to whether it would take place on this day or the next morning, everything then seemed to happen very quickly. I was taken off and prepped for the op and started to panic. I'm not good with needles or surgery and get quite anxious about procedures. I usually request sedation and did so at this point. They told me that because I had dated recently, I wouldn't be able to have sedation as it would be dangerous. I sobbed and begged and sobbed some more. One of the team came down to see me and told me how important it was for me to have the biopsy done as soon as possible. It was at this point that I realised the seriousness of the situation. The team were concerned that I was rejecting and would need to treat this as soon as they possibly could which meant finding out what was wrong as soon as possible. They had been working hard all day to find a slot for me and this was it, they really couldn't wait another day!

The biopsy didn't take long and I will try to write a detailed separate post about it.

Once back, I had my family around me and I could see there was concern. I was very jaundiced and definitely not as perky as I had been the day before. However, I still managed to smile and have some silly time...

Getting into the Christmas Spirit with the reindeer antlers from Mumma!

This probably shows the extent of the yellowing a little better... yes, I really was that shiny, kind of like a lemon really!

The docs came back later that day and although they didn't yet have the biopsy results, they were keen to treat me for rejection. This meant 3 high doses of IV steroid over 3 days with the first dose to be given that night. I was warned that I was in for a rough night. The steroids would most likely keep me awake, make me hyper-active and probably hungry. They weren't wrong...

Keep Smiling :) 

It's Getting Hot in Here...

The heat at times was unbearable... I think I had to be reminded a few times that stripping off was inappropriate! A number of times, the doctors would come round to examine me and want to but blankets over my legs which I was not impressed with. I had gone past the stage of wanting to retain my dignity and would happily have lifted up my gown and flashed the very attractive hospital nappy pants that I had to wear. In the end I gave in though.

Mum and Caius worked hard to try and keep me comfortable and bought in cool packs, mist sprays, cold flannels and even a couple of ice packs. The bed I was in was a special air bed designed for use in patients that aren't particularly mobile. One of the problems with it though, is that it retains heat making it very warm. By Tuesday 3rd November, I was more mobile and spending a reasonable amount of time sitting in my chair. The problem with the chair was that it was plastic and also very hot. Not only that, but the amount that I was sweating meant that I got completely stuck to the chair! I ended up trying to cover the chair in towels so that I could sit comfortably. The trouble with sitting was that it took a lot of energy, energy that I didn't quite have so ended up needing to get back into the boiling hot bed! I was in a perpetual state of being uncomfortably hot. If only hospitals were allowed to open windows - a bit of fresh air would have been an absolute godsend!

Chilling out with Dad. In my right hand is my PCA. The towel on my tummy was to help me cough- coughing was less painful when I pressed on a towel on my abdomen. This is a well used technique after abdominal surgery.

To add to the general heat of the ward and the bed, one of the side effects of fentanyl is sweating. After dosing myself up with fentanyl, I would break out in sweats but needed the pain relief! Again, a perpetual cycle of discomfort. 

The team were trying to bring the fentanyl dosage down but unfortunately I was still in quite considerable pain.

There was a light at the end of the tunnel... The ward I was on was a temporary arrangement whilst the actual ward was being refurbished. We were due to move to the proper ward the following week so I wouldn't have to put up with the heat for too much longer!