30th June 2013. My Mum and I were all packed and ready to go to London for our 3 night stay for the completion of my transplant assessment. The weather was hotter than fire so the combination of this, London public transport and not really knowing how to get to the hospital made for quite a stressful journey, especially when strangers were basically sat on my lap on the bus due to it being so overcrowded. Unwanted physical contact does not make me happy.
Once we got to the hospital, we had to go up to the ward and collect the keys for our accommodation. We were provided with our own little room in a house that has been refurbished especially for liver patients and their families to stay in whilst they are going through the transplant assessment and also at the time they are transplanted. This accommodation is provided by LISTEN – a charity which supports pre and post liver transplant patients at King’s. I can’t tell you how grateful we were to have somewhere nice to stay with everything we needed including an en-suite, a shared kitchen and even a little garden area, all within a stones throw of the hospital! After travelling all day to get there in the disgustingly hot weather it was just what we needed!
DAY ONE: On the Monday morning after a restful night in our room, we headed up to the hospital for my first appointment. This appointment was for me to see a junior doctor and my transplant coordinator. Walking around the hospital was quite overwhelming. It was huge! When we got to the Liver Unit the reality of everything suddenly hit me. I’m very rarely nervous when it comes to hospital appointments, especially if I haven’t got to have anything done but at this moment, my heart was racing and I felt like I was about to be sick! Seeing the door to the liver transplant operating theatre and the intensive care unit and then seeing very sick patients on the ward was like seeing a glimpse of the future for me. All of a sudden, out of know where I was hit with the realisation that this was actually happening, this was my life.
In the appointment the doctor asked me to tell her the brief history of my disease and my life-style over the past few years, explaining my symptoms, any hospital stays and how much the disease affects my day-to day life. My transplant coordinator nurse was called Grace, she was extremely friendly and full of knowledge! she went into quite a bit of detail about the transplant process, telling us what happens when you’re put on the list and what happens when you get the call to say they’ve found a match. Already, we were learning things we didn’t know before and beginning to understand that there is way more to the transplant process than we thought! Grace told us that we’d learn a lot more in the education session on Wednesday. I then had copious amounts of blood taken from me (12 vials worth) and a nasty blood gas test – these are much more painful than regular blood tests…they suck!
And that was the first day done! Easy! Me and Mum spent the rest of the day exploring the area and getting a take-away from Nando’s for dinner :).
DAY TWO: We knew this was going to be a long day. I had a bed reserved for me on the ward for the whole day. I was going to be meeting the whole transplant team – consultants, surgeons, a dietician, anaesthetists, nurses and of course my transplant coordinator.
So after waking up at 8.30 (the time I was meant to be at the hospital) I rushed over and got settled on the ward. First up was the dietician. I met with a dietician during my assessment at Derriford so I knew what to expect. She asked me to go through what kind of stuff I eat on a regular day, how my appetite is in general as well as some other things. She then did some clever calculations to work out if I was getting what I need from my diet. For people with liver disease its harder to get energy from food. In a healthy person, the liver and muscles store glycogen from the food you eat, this is a back-up energy store which is used later when it’s needed like in between meals and overnight. The liver is in charge of releasing this energy and then replacing it when you have your next meal. When the liver isn’t working properly it cannot do this. Your body will find other ways of getting energy so it will start to break down its own muscles for energy. Eventually, the muscles get weaker and weaker and waste away. To prevent this from happening it is important that people with liver disease to eat meals and snacks every 2-3 hours…an excuse for me to eat….GREAT! The dietician advised me that I need to get more protein and carbohydrate into my diet and gave me some ideas on how I could do this. She then gave me an odd little tool which would measure the efficiency of my muscles. I had to squeeze it with my hand for a certain length of time until it took a reading. I’m not explaining that very well, I’m not really sure about the scientific details of it but it basically told her that my muscles are beginning to waste away. It was all really useful and obviously important info that I needed to take on board!
Once the dietician was finished, we went and got some lunch and then went back up to the room to wait for the next meeting, we weren’t sure who would be making an appearance next. After a little wait, two gentleman came into the room and introduced themselves. They were the surgeons. I was strangely in awe of their presence. They knew the brief history of my PSC and what had happened in the past few months. The lead surgeon told me his opinion was that I was in need of being put on the transplant list now and that is what he would be voicing to the other members of the team when it came to them discussing my case. It was a quick visit from them but they were very friendly and made me feel at ease, it was also good to hear their opinion because so far no one else had really told me their clear opinion.
After a quick visit from the anaesthetist we were then greeted by a group of 5 or 6 people…it was very cosy in the room at this point! This group of people consisted of a transplant coordinator (not Grace, it was her day off), junior doctors and they were all led by the lead consultant, Doctor Aluvihare. He started off by making a joke about the number of tattoos I have but the talk soon became very serious. Doctor Aluvihare talked about the stage of my disease and explained that my case was quite a difficult one, my liver is ‘on the edge’ as he put it. So it isn’t in such a horrific state that I need to be transplanted immediately but it is definitely on it’s way out. He explained that with people my age it is always difficult. We have the benefit of very good recovery after surgery because our bodies are young, fit and healthy (apart from the obvious crippled liver situation) so that is one of the pros of being placed on the waiting list now. However, one of the cons of having a transplant means being exposed to life long medication with a lot of side effects and risk factors. Obviously, the younger you are at the time of transplant the longer you will probably have to take these medications for, therefore increasing the risks that come with them. Also, at this point in time there is no evidence to suggest good survival rates in patients who have been transplanted for more than 20 years. Hearing that was the hardest thing I’ve had to hear throughout all of this.
The doctor continued to talk about all aspects of transplant, good and bad. He told us that more often than not he would feel happier placing someone on the transplant list sooner rather than later, one main reason for this being the length of time you could expect to wait for a new liver. With my blood group, the wait is 18-24 months on average. He explained that he wouldn’t want to leave it until it was too late. Basically he was telling me that there are certain things that could happen or arise to stop me qualifying for a transplant, such as developing bile-duct cancer or my condition worsening so much that I wouldn’t be strong enough to survive the surgery. It was difficult to hear all of this and at this point my mind was all over the place!
A few more people stopped by to introduce themselves including a liver intensive therapist joined by a group of students. He asked if I wouldn’t mind them ‘having a look at me’. He made them try and guess what disease I had and why I was there…I had to sit there on the bed whilst they called out their guesses. It was quite funny, I felt like some kind of fairground game.
So after a very long day I came away from the hospital feeling more overwhelmed than ever. I had so much information to process and a lot of harsh realities to think about. I was in two minds about whether I wanted to be put on the list now or if I just wanted to be left alone. My gut feeling was telling me that it was the right time, I didn’t want something to happen that would mean transplant was no longer an option and I knew if I wasn’t placed on the list now there was a greater chance of this happening. I was really scared about the prospect of being put on the list now but deep down I knew I’d prefer that outcome. At least it meant I would be able to see a light at the end of the tunnel, a glimpse of getting my life back and feeling well again!
DAY THREE: Today was going to be another long day with lots more information to soak up. We had a three hour transplant education session in store for us! I was ready for it though and eager to find out more. I’m one of those people who likes to know as much as possible, all the nitty, gritty details. I feel like at least that way I can be more prepared for whatever may happen. I just hate not knowing! Before all of that though, I had a chance to catch up with my very good friend Robyn. Robyn is one of my dear friends from uni, she was living in London so we decided to meet up for breakfast before I had to go to the hospital. This was a nice little addition to the trip and a nice break from hospital stuff! I got to update her on everything and what’s better is that I got to hear all about her exciting plans for her trip to China! She was going over there in August to teach English for a few months.
So after a lovely morning with Robyn I headed back over to the hospital to meet my mum and we made our way to the education session. The first half of the session was led by Grace. She handed us lots of information and talked us through a PowerPoint presentation which explained the transplant process from the time someone is put on the list right through to the surgery. It seemed like every detail was covered, it was really interesting, a bit scary and very useful to hear all of it.
We stopped for lunch once Grace had finished and then we were joined by another transplant coordinator. This lady looks after the post-transplant patients so she talked us through what we could expect after the surgery.
To finish off the session, a man from the LISTEN support group came in and talked about what they do and told us a little bit about his transplant experience. It’s always good to hear from someone who is doing so well after transplant, it reassures you that even though there are many risk factors and things that could go wrong, there is also a lot of hope for a new lease of life, a chance to live life doing all the things you love again.
So after three pretty intense days we headed back home to Somerset feeling exhausted and with a lot of new information on board. Now all I could do was wait for a phone call to hear if I would be placed on the list or not.