I was diagnosed with Haemochromatosis in 2005 and subsequently cirrhosis in 2009 and liver cancer in 2011. I was put on the transplant list in June 2011 and had a transplant six months later. At no point did I have any overt symptoms of liver disease apart from an isolated GI bleed which led to the original diagnosis of cirrhosis. That diagnosis led to periodic MRI checks and it was one of these that spotted the small tumour (Stage A). I feel my GP was very alert to spot the liver test marker that raised the prospect of haemochromotosis.
This initial diagnosis and subsequent treatment was very good, and, subsequently, outstanding at the liver unit at St James’s in Leeds. There was an issue, however, of a failure to join the dots in 2005 with the original diagnosis and treatment of haemochromatosis. I have had almost all of the symptoms of this condition and it is possible that earlier action might have been taken to avoid the subsequent symptoms.
The diagnosis of a potentially fatal disease inevitably comes as a bit of a shock and among the things I have done to write this is to re-read a reflective account I started shortly after my initial diagnosis. What is striking about it, is a sense of calm and I think to some extent that sums up my emotional state throughout the period between the diagnosis and the transplant. It took a while to talk, or even think, about “cancer” as opposed to having “a small tumour” and I suppose that is a consequence of the assumption that cancer = inevitable death. The realisation, however, that many people survive is a source of some reassurance.
During the time I was waiting for entry to the transplant list (frustrating, with some organisational disappointments) to the point at which I was called for my first (aborted) transplant, I was well. Totally separately from the original diagnosis, I had decided that 2011 was the year I was going to get fit. On 2nd January I stopped drinking alcohol and went on a diet. I started to exercise. In March 2011 I was due to work in Mexico for 5 days and my wife and I decided that we would combine the work trip with a holiday, being away for 4 weeks. During that time, I maintained my diet and exercise regime with no alcohol. By the time we got home in mid April, I had lost 3 stone in weight and was feeling very well. Our return home coincided with anxious telephone calls from the local hospital where I’d had a routine scan before we went away. This was the first indication that something was wrong.
From this initial indication to admittance to the transplant list took about 10 weeks and during that time I had what was to become a routine trip across the Pennines from my home in Blackpool to St James’s Hospital in Leeds (just 400 yards from where I was born). There is an excellent, albeit slow, train service between the two and the two and a half hour journey became a feature of 2011 and 2012.
During this period, I had two doses of TACE (Transcatheter arterial chemoembolisation), designed to reduce the tumour, various respiratory and cardiac tests and an angiogram to check on heart function. These experiences were invariably characterised by a recognition that I was in good hands. By October, my wife and I were beginning to feel restless. We work as freelance consultants and have flexible holiday arrangements and because we had to stay within 3 hours of Leeds, we had been somewhat limited. We had, however, enjoyed revisiting parts of the Lake District, Stratford-upon-Avon and Fife. On a routine visit to Leeds, however, we discussed the possibility of voluntarily coming off the list for a short while so that we could take a break further away, while I was still well. We were actively considering this when I had the first late night summons to Leeds when a possible donor liver became available. We had a drive over the M62 and a series of tests that led to a decision that the organ was not suitable for me. We left for home at 5.00am with a mixture of disappointment and relief. By midday, life returned to normal and I went to a planned meeting in Manchester.
That false alarm closed down the possibility of any further long distance trips, alerting us, if nothing else, to the fact that I was close to the top of a list. I think it is true to say that I had genuinely mixed feelings about this; part of me wanted to have the normality of a holiday abroad, another warned me that it was not a good idea. As it happened, however, before I was able to pursue it further, I had another late night call that led to my transplant.
We were in Chester for a weekend to Christmas shop, after dinner on the Saturday night there was another telephone call from Leeds saying that there was a strong chance there was a donor organ available. We arrived at Bexley Wing at about 3.00am and went into a series of tests, as before. The anesthetist came about 11.00am and told us a decision had yet to be made by the surgeon. By midday, I was convinced that we would be heading home again. At 12.30pm, however, I was collected and taken down to the operating theatre.
In summary, surgical and medical treatment was brilliant; nursing care less so, particularly at night when staff were severely limited in numbers and are grossly overworked. I was discharged after 11 days and was home in time for my 64th birthday, Christmas and New Year celebrations. Recovery was quite quick and included weekly visits to the Unit to see the surgical team and regular email contact with the transplant team. During January, I started going to the gym (very gently) and doing a short weights circuit at home. I went to my first training event on 10th January and gave two lectures (exhausting!) and my first full day event on the Isle of Man at the end of January.
The rest of 2012 was devoted to returning to something approaching normal life. Because most of my work is home-based, I was able to resume quite soon, albeit with a mid day nap. Weekly visits to the surgery team gave way to monthly, then three monthly visits to the medics.
I was a little shy of describing myself as a liver transplantee, and I am not entirely sure why. Part of it may be down to an assumption about the causes of liver disease in the minds of people (i.e. alcohol or other abuse) and this is a theme that emerges from time to time in Health Unlocked Blogs and Questions. However, this feeling is wearing off and I do now find myself telling people, if only to alert them to the possibility of donorship, something I am keen to promote.
I think there a range of social factors that make public awareness an challenge. Alcohol is a case in point: one of the most popular programmes on TV is Coronation Street. I am not a fan but I catch it occasionally. Among the very vivid features is that all problems / challenges / issues are resolved in the pub and alcohol is the solution not the problem. My own experience of alcohol was (almost) well managed and I was fortunate not to have serious consequences (other than cirrhosis and liver cancer, that is). What I had not realised, was the depth of misery and anguish liver disease can lead to. It was really hard to see the suffering, pain and humiliation of some of my fellow patients. This is also a feature of the blogs and questions on Health Unlocked. I think this would be a shock to people unconnected with the cause.
On the positive side, I am much fitter and stronger (and I think, healthier) than I was in the previous 5 years before my transplant. I have maintained weight loss and go to the gym or do a circuit most days, and I have a drug regime which is well managed. In terms of support, I am a member of Haemochromatosis UK, I am active on Health Unlocked and a semi detached member of the St James’s patient group.