David’s story: “To go from feeling unwell to being told I need a liver transplant was a shock to say the least”

Even though he was a keen sportsman, David was overweight. His busy lifestyle meant he didn't have time to prepare and eat healthy meals. He was diagnosed with type 2 diabetes in the 1980s and in 2013 he was stunned to discover he needed a liver transplant. Thank you for sharing your story, David

I was born in Hackney in 1955 into a fairly typical East London working class family. Post World War II and rationing healthy eating meant having enough to eat, that is, meat and two veg. The nearest anyone got to food supplements or vitamins was cod-liver oil or vitamin C via a very sweet orange concentrate bought from the local baby clinic. If five-a-day had been invented then, it certainly hadn’t reached the East End.

From being a very skinny five or six-year-old I developed into a overweight teenager. I remained so for most of my adult life, even though I played a lot of sport, went swimming and played football for two different teams at weekends. Because I was out and about a lot I didn’t have a fantastic diet or sit down for meals, I just grabbed what I could on the way. In the 1980s I was diagnosed with type 2 diabetes, which progressed to going on insulin in 2005. At the beginning I was told my diabetes could be controlled with diet, but there wasn’t much in the way of check-ups. The only things that were ever checked was cholesterol, blood pressure, eyes, feet and kidneys – no one ever mentioned your liver.

After 12/18 months of blood count and clotting issues that remained a bit of mystery, I was very unwell over Christmas 2012. I felt very tired, bloated and sick and had no appetite. A scan revealed I had an enlarged liver and I was referred to the hepatology department at Bart’s Hospital in London.

The first thing my consultant asked me was if I drank – I’d stopped several years before because only one alcohol drink made me feel unwell for several days. I’d never smoked. I was diagnosed with MASLD (metabolic dysfunction-associated steatotic liver disease, previously known as NAFLD). The consultant said the only treatment in the long term was a liver transplant. From just feeling unwell to being told within five minutes of my appointment that I needed a transplant was a shock to say the least.

I reacted very badly to water tablets

I was put on a salt-free diet and water tablets, but reacted very badly to them, losing 22kg in ten days. At my next clinic appointment I had further blood tests and shortly after I got home the consultant rang me and told me to go back to the hospital because I now had acute kidney failure. I was put on drips in the liver ward and I was worried – would I be well enough to get on the transplant list, could I stay fit enough to remain on it long enough to get to the transplant, and could I continue working? My son had just passed his A levels and wanted to go to university, but wondered whether we could afford this now I was so ill. It took some convincing that he should carry on with his plans, although at that stage I did not expect to be around long enough to see him graduate.

My kidneys stabilised and they managed to get me well enough to get through the two-week transplant assessment process. I was accepted onto the transplant list at the beginning of September 2013.

Because my liver wasn't producing the energy needed, I started burning muscle

Even on a no-salt diet, my stomach would swell with retained fluid until it was hard work to walk or go to work. So every two weeks I spent a day in the hospital being drained – the first time they took 10kg of fluid. Work became harder to cope with and because my liver wasn’t producing the energy my body needed, I started burning muscle. To try and prevent too much muscle loss I was told to eat every few hours before going to bed. It was very strange for a diabetic programmed to worry about eating too much and always trying to lose weight.

On the 6th November I was scheduled to have a TIPS procedure at the Royal Free hospital to reduce the blood pressure to my liver. I went into hospital the night before to prepare for day surgery in the morning, only to be woken very early to some surprising news – I would be having a liver transplant instead because a liver had become available overnight. The emotions I went through include joy, fear, thoughts for the poor person who had just died and the gratitude to their family for giving me another chance at life. But there was no time to think as I was prepared and in the operating theatre before 9am.

The transplant went fantastically well

The transplant went fantastically well and I can’t thank the Royal Free enough for the wonderful care I received. I became cytomegalovirus positive – a common viral infection post-transplant, but it was nothing major, and I was discharged less than a month later and passed back to the Royal London for ongoing follow-ups.

While I was recuperating in 2014 Professor Foster, Head of Hepatology at the Royal London (amongst other titles), was leading a campaign to raise the profile of liver disease as a growing problem. He believed there should be national standards for care and treatment times, as there is for cancer treatment in the NHS. I was asked to take part in an interview with the BBC on the ‘Scandal’ of Liver Disease Inaction. It was unfortunate that social media feedback seemed to come from those who focussed on blaming liver disease patients for being overweight or drinking too much, but that’s their problem.

I’m lucky to be alive and believe more should be done to test for liver disease to enable earlier diagnosis, particularly for diabetics. In my case diagnosis was all too late and only left me with the option of a transplant. I was fantastically lucky to have got one so quickly and without it I would not still be around. It gave me a new life, and I got to see my son celebrate his 21st birthday, graduate and get his first proper job. I got five more years at work to setup my future and in 2018 I decided to retire on my 63rd birthday. I now enjoying spending more time with my friends and family, keep fit, walk with my adopted retired greyhound, and go to West Ham’s home games with my son as we’re season ticket holders!

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