2006 really was a tough year in which I spent a lot of time either in hospital or attending hospital for various reasons. It was certainly very difficult also for my family and especially my wife and children.
In terms of my health in general, a liver transplant has always been on the cards for me. In fact, I came very close to having one during the middle of 1997, when my PSC became symptomatic. At this time, I was very ill with jaundice and almost constant cholangitis. It was only with enormous help from Dr. Roger Chapman, and latterly the liver team at the Q.E. (Queen Elizabeth, Birmingham) that I got through a period of serious illness which lasted around six months. I have also suffered with Ulcerative Colitis since first diagnosis in 1984 (22 years now) and PSC since diagnosis in 1994. I suppose I have really been on 'liver watch’ from this period, with Dr. Roger Chapman being absolutely central to this. Roger has been wonderful throughout.
With regard to my recent transplant, the decision to undertake a transplant really gained momentum following the urgent removal of my gallbladder at the John Radcliffe Hospital in March 2006. A routine ultrasound scan during December 2005 found a polyp which, it was felt, may turn cancerous. When it was removed, pre cancerous cells were unfortunately found in the lining of my gall bladder even though the polyp was clear. With this in mind, it was felt that the time had arrived for me to be considered for a transplant taking place. As you know, the decision to be put on a list is not that straight forward.
Fortunately, my case was already known to the specialist liver team at the Q.E. as I had regularly been seen and monitored by them from 1998-2004. As a consequence of the gallbladder results, the team at the J.R. then contacted my consultant within the liver unit at the Q.E. to review my case. It was not until the summer of 2006 that I was finally told that I would be considered for a transplant, but first of all, I would have to attend a week long transplant assessment at the Q.E. which would ultimately determine whether or not I would have the opportunity to have a transplant.
The assessment eventually took place in early September and lasted a whole week. The assessment process was incredibly thorough, and involved many different blood tests, ECG, and MRI and two CT scans, x-rays, various ultrasound scans as well as meetings with the key people involved in the procedure. All of this was co-ordinated by a transplant co-ordinator who was absolutely amazing. No other words could describe how good all the people were, who were involved in this difficult process. It was not until late on the Friday afternoon of this week following a speedily arranged CT scan, that I was finally accepted on to the list. I was in fact told that, because of my condition, I would be placed on the 'priority' list. I naturally asked what this meant, and I was told 'I should pack a bag when I got home' and told that one person was asked to return to Birmingham on their way home from the assessment. In other words, my transplant, subject to my health at the time, could be very quick. I actually felt very pleased about this, and certainly reassured after the treatment I had received, and also because I was not sure if I would be accepted on to the list until very late in the day on the Friday. The other news from the week of tests was that I was also diabetic. Great news!
I must say that our journey home from Birmingham was quite surreal, as both my wife and I felt it would not be too long before we would be returning to the liver unit. The next few days were spent at home doing very little other than trying to exercise and stay fit. Strangely, the one thing I didn't do for some reason was pack.
Only 13 days later on Thursday 28th September at 9:45am, I took a call from one of the transplant coordinators at Birmingham. Again. this was odd, because I had actually been awake from very early in the morning, having woken dreaming that the transplant was taking place. I was asked by the co-ordinator how I felt, and whether I could get to Birmingham in the next two hours for an operation which would take place around 6:OOpm, assuming everything could proceed, i.e. I was well enough to receive the liver. We quickly set off for Birmingham although this was not without incident, as my wife and eldest daughter were actually in the casualty unit at the Royal Berkshire hospital, tending to my daughters ankle. Friends eventually tracked Carolyn down and we set off.
Following various tests to check that I was well enough to accept a transplant, I actually received a 'split' liver with a small part of the donor liver being accepted by a young child at the Birmingham Children's Hospital. Amazing! The seven and a half hour operation actually started at 10:00pm and and finished early the next morning.
The transplant itself went well, and I was later told that my liver really was not too well at all. The timing was therefore spot on. My wife, Carolyn, stayed in the hospital for the three week duration. Whilst in ITU, my eldest daughter Laura was actually given the task of removing my breathing apparatus. She now wants to be a medic!
After time in the ITU and high dependency units and 6 days on the ward, I was allowed to leave hospital, only to return 4 days later due to 'acute' liver rejection. I must say that, although this was not unexpected and the surgeons and all the medical staff were very calm, this was a very tough period which involved a liver biopsy, stomach drain (via a gastro nasal tube) and ultimately 600mg of steroids and 200ml of insulin in 3 days to counter the rejection. I also lost a lot of weight - around 30lbs which led to me becoming known as "chicken legs" by the nurses. This all took eleven days and was tough, albeit there were some real 'One Flew Over The Cuckoo's Nest' moments which, for the time being, I will keep to myself. The sequel will be out soon!
I am now recovering well, but we have to return to Birmingham regularly for further consultations. We actually treat these as a day out and also as a chance to see some very special friends. In terms of fitness, weight etc., I feel I am doing pretty well, although I know I have a long way still to go. I am certainly eating more, putting on weight, exercising at the gym and taking around 30 tablets per day (down from 40+). Yum!
It obviously has been a really tough time for everyone, but all my family and close friends really came together to help in so many ways. The nursing and surgical staff at the Q.E. Birmingham have been absolutely outstanding, and we cannot thank them enough.
There is no doubt that a transplant evokes so many emotions within you and for those around you, and we are very much aware that we have been given another chance as a result of the kindness and bravery of the donor family, who are in our thoughts constantly.
With regard to the future, I very much want to give time to increasing awareness for organ donation.
This is the short version which I hope makes sense. I am very happy to provide more information if it will help in some way and also to share my experience if it helps.