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Sound the Alarm

Demand faster diagnosis of liver disease and liver cancer.

Demand faster diagnosis of liver disease and liver cancer.

Craig's story

It was easy at this point not to talk to anyone about it. So, I didn’t.

Although my father was an alcoholic, I never really had my first proper drink until I went to university when I was 18. I wasn’t a heavy drinker then, and although I drank socially after I graduated, I never considered it a big problem.

By the time I was 28 though, I don’t think my head hit the pillow any night without me having had some wine. Years went by with few consequences (although I did lose my driving licence at one point due to it), until my early 40s when routine bloods showed my liver enzymes were elevated. That should have been the warning sign sufficient to reign my dependency in, but it did not, as it was by this stage a necessity to get through life, an addiction.

Summer of 2018 I asked a colleague if my eyes looked OK, I knew they weren’t – they were yellow. I arranged to see the hepatologist at my local hospital (I had regular appointments since the enzymes were high) and it was clear at this point my liver was failing. There were other symptoms at this point, but now something was showing ‘on the outside’.

I live 250 miles away from my family, am single, and live alone. It was easy at this point not to talk to anyone about it. So, I didn’t.

My consultant arranged for me to be admitted as an in-patient, for an on-ward detox and further supportive treatment. I spent nearly two months on the ward and didn’t tell my family I was there. They were on holiday at the time, and when they rang every day, I would hide in the family room and chat as normal. My boss was aware, and he was so supportive I cannot thank him enough.

After discharge, my consultant started talking about transplant. This struck the fear of God into me, how was I to explain it to anyone, how would I manage without work for months (I assumed that to be the case). I confided in a friend who was supportive, and I started the process of seeing whether I was suitable for transplant. That introduced me to the great team at Leeds St James Hospital.

Craig in hospital

My symptoms progressed, I got extremely ill. I was admitted again on several occasions with huge amounts of fluid in my tummy, and, as it progressed, vomiting blood.

The eligibility for transplant was dependent on many things, abstinence, and being fit enough to withstand surgery amongst other things. I had to bite the bullet and tell my family too (none of the anticipated bad reactions, only full of support). After various assessments, and tests, I was accepted and signed the consent form for transplant on 18th March 2019. I alerted neighbours too, as the call could come any day, and I would need to get to Leeds quickly.

Help us Sound the Alarm on liver disease and liver cancer.

I continued to deteriorate, and on 20th May 2019 I was having fluid drained off my tummy when the call came. A neighbour collected me (after the drain was removed!) and we went to St James. No false alarms, this was the moment.

Recuperating at home

I woke in ITU the following day (surgery had been overnight – I walked into the theatre!), and recovery began. My parents visited, I had bad spells of hallucinations on the ward which settled but they got to see me at my most vulnerable. I was discharged successfully on 1st June, quite weak but eating and drinking and able to climb stairs. I took a taxi home, as no one was at home for me, and began my recuperation. The support from the post-transplant teams at St James was amazing – medically, nutritionally, and psychologically. It’s hard to compare the recovery process when you live alone, compared to having a partner there for you. Friends and neighbours supported me, and day by day I grew stronger, and now I live a busy working life, with a dog at home to keep me company.

The heroes are at every stage of my experience, from my consultant here in York, to the St James team, and most especially the local GP practice, who have supported me from the date of acceptance for transplant. It’s hard when multiple teams look after you, as you are the only person who is totally up to speed with everything that is going on. All credit to everyone who has gone out of their way to support and help me.

The gift of transplant is the greatest gift an individual can receive from others

I find the best way I can give back the debt I owe to my donor and their family (whom I do not know, and have not tried to contact yet) is to give back to those in similar positions. I have enjoyed acting as a complex patient for trainee doctors and the like, sharing experiences in online forums, and hope to do more in the future.

There are so many horrid conditions that lead to transplant, I feel inadequate and unworthy of the care and attention I received, as in all respects my condition was brought on by myself and my addiction, and that affects me mentally from time to time. I am just over two years abstinent now, and no desires to drink ever again.

The gift of transplant is the greatest gift an individual can receive from others, the donor and their family, the health care professionals, and the support you get from friends and loved ones.

Help us Sound the Alarm on liver disease and liver cancer.

Help us Sound the Alarm

Sound the Alarm on liver disease and liver cancer.

Lend your voice to those demanding faster diagnosis of liver disease.

Sound the Alarm is a campaign run by British Liver Trust.

British Liver Trust
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SO23 8FE

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What is a CCG or ICS?

CCGs (Clinical Commissioning Groups) were established as part of the Health and Social Care Act in 2012. They are groups of general practices, which come together in each area to commission the best services for their patients and population.

ICS (Integrated Care Systems) are new partnerships between the organisations that meet health and care needs across an area, to coordinate services and to plan in a way that improves population health and reduces inequalities between different groups. ICS will replace Clinical Commissioning Groups (CCGs) by April 2022 and cover a wider geographic area than CCGs.

Devolved nations – health is primarily a devolved matter across the four nations which make up the UK. Among these variations are differing regional structures, Scotland and Wales have Health Boards, England have CCGs (currently being superseded by Integrated Care Systems) and Northern Ireland has Health and Social Care Trusts.

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