Simon's habitual drinking increased significantly during a difficult period following a move to a new job. Although most of the time he functioned fine, when he woke up one morning with a distended stomach, he instantly gave up alcohol. However, it would take his own and his family's combined efforts and determination to finally get him the treatment he needed. Thank you for sharing your story with us, Simon
I had been drinking for a long time, it probably started when I went to uni because that was the lifestyle. Yes, it became alcoholism, but I was more of a habitual drinker. I’d come home from work at 6 o’clock and have a few glasses of wine to relieve the stress – that would turn into one bottle which then became two.
I continued drinking quite a lot for 20-odd years, it was part of my social life. It got to its worst when I moved to Hertfordshire for work – I didn’t know anyone there and was very lonely. On a Saturday I’d watch TV and have quite a lot of wine, have a sleep halfway through the afternoon, then start on the wine again. It numbed the sadness and passed the time. Something came up on a blood test when I was in my mid-thirties, but I ignored it.
A lot of my friends liked a drink too, so no one said anything, but they probably didn’t understand the amount I was drinking at home. On a couple of occasions work colleagues commented that they could smell alcohol on my breath. It was almost a joke: “You must have had a big night!” I ate lots of extra strong mints to mask the smell – whether that was successful, I don’t know.
Ninety-five per cent of the time I functioned fine. I could feel rough at work, but hid it and carried on. I probably got used to feeling like that. There were a couple of times in Hertfordshire when I felt particularly bad because I’d drunk more than the two bottles and would either call in sick or be on the way to work and feel so bad driving the car that I’d go home. I was probably way over the limit.
I would have some days off wine every so often, thinking my liver would repair itself, but it would have taken weeks for it to even slightly recover and it wasn’t a strong enough feeling to make me stop.
It got a bit worse during Covid and lockdown when I might start drinking at 4 o’clock because I was bored at home. I started yellowing and in March 2020 woke up one morning to find my stomach was distended – it literally happened overnight. I went into a panic and rang 111. They told me to register with a doctor who booked me in for a blood test. I think they realised it was ascites – a side effect of cirrhosis – I stopped drinking that day.
I didn’t drink again. I think my doctors were a bit shocked by that, but I didn’t have any withdrawal symptoms.
Although my pancreas was a bit enlarged, my liver wasn't as rough as they thought it would be
I was referred to a consultant at my local hospital and had an ultrasound. Although my pancreas was a bit enlarged, my liver wasn’t as rough as they thought it would be, so I was put on water tablets. The only symptom I’d had while still drinking was weight loss – I weighed 13 stone and lost one stone. I’d thought it was a good thing, but now I was losing weight phenomenally and went down to 8 stone 12 in the summer of 2020. My brother said I looked like an Auschwitz survivor.
I got scared and my GP reduced the dosage, but then the water started coming back. The medication was increased again, but didn’t have any effect. I was put on a different medication, but it didn’t make any difference and began to affect my kidneys. I was taken off it at the end of the year and the water completely came back.
My consultant was monitoring me every six weeks, but I didn’t feel my case was being taken seriously. I kept asking for an action plan, but not getting one and by early 2021 I was very distended with fluid. In March he said: “Look, you have ascites. We can either sit and talk about it for 20 minutes or I can try to get you into hospital and get it sorted.”
I was shocked and offended – I’d been made to feel like I was asking too much and causing too many problems. By 3pm that day I was wobbling when I walked and went to A&E. They took me in straightaway and started the draining process.
I knew I was deteriorating and it was frightening, but mostly frustrating. My brother started researching where I could get better treatment and the Queen Elizabeth in Birmingham came up as one of the best places in Europe for liver issues. He talked to one of the secretaries there and I spoke to my GP who bypassed my local hospital and referred me there directly. He showed me an email from Queen Elizabeth Hospital saying I sounded like an ideal candidate for a transplant and I was shocked – no one had mentioned a transplant to me before.
I didn’t sleep the night before my appointment at the QE on March 2nd and had a massive panic attack that morning because I was so poorly and worried. It was only about 100 metres from the car to the hospital but I couldn’t walk because my body was so distended.
My new consultant there looked incredibly shocked to see me, I was in a wheelchair due to the fact that I have water retention across my body. He said: “If we don’t get you sorted pretty soon, the maximum you’ve got to live is a year or two.” Now for the first time I was talking to someone who could see me.
The hospital just took over and did everything without me having to chase them. After one particular drain, because my oxygen levels were too low, I was kept in. It was very scary but a relief and it felt like a turning point. I just wish it had come earlier. They sorted out an action plan of different treatments, including being drained regularly. The consultant also got me in to see a clinical nurse that day for the psychological stuff I needed for the liver transplant assessment.
The hospital wanted to send me for a liver transplant assessment pretty quickly
They wanted to send me to assessment pretty quickly, but the dietician said I needed to put some weight on first and get stronger. I had an NG tube fitted through my nose to feed me at night. This was another shock. I had it for four or five months – you sort of get used to it, but it doesn’t make it any more palatable. You go out and people look at you.
In April my boss said my work wasn’t up to scratch and put me on a performance improvement plan. With liver disease you get brain fog and suddenly need to sleep, but I’d never had any negative feedback about my work before. I think they didn’t want to deal with my illness and were just trying to get rid of me. It was horrific and at the end of May I went off work with stress and my family said I just needed to stop. So I became a Bodyshop consultant to keep my brain active and I’ve had amazing support from all the other consultants since.
While all of this was happening I was also my mum’s carer. She had severe arthritis, one of her hips and both her knees had been replaced and she was waiting for another hip replacement. She also had scarring on her lungs and a heart condition. I had to take her to all her hospital appointments in a wheelchair when I was not the best myself.
I passed the liver transplant assessment in July 2021 and later that month I took mum to hospital to discuss her hip transplant and dropped her at home. That evening my brother rang and said mum sounded confused over the phone, and a few hours later I got my first call from the QE saying they’d found me a liver. I didn’t have the transplant that night and had to get drained a few hours later. My mum passed away during the night and was found by her carer. I was in the hospital being drained when my brother rang and told me. Her one wish was to see me well and I wish she’d been lived to see that.
I had eight false alarms before I got my transplant. Four didn’t go ahead because of the liver not being suitable and in the other four they didn’t have a bed or staff available in intensive care. I didn’t want a liver that wouldn’t have suited me, but the staffing stuff was upsetting and frustrating because it’s all to do with budget cuts.
After the eighth time the consultant said he was at his wit’s end and if he had to, he’d go to the hospital’s CEO to get the staffing sorted. And his promise came true. The last call came at 8.30am on 21st October 2021 when I was asked how quickly I could get in. They phoned again to check I was on my way and when I got there, they told me to put on a gown. I thought ‘well, this is a first’ and after various tests I went straight into the operating theatre and it was sorted. I went home 12 days later.
My friends told me post liver transplant that they thought I would die pre-transplant
I probably didn’t realise how ill I was – my friends knew and told me post-transplant that they thought I would die pre-transplant. Getting a transplant felt to me like I had been reborn. I had a vision that I had an open field in front of me with no obstacles or hurdles. The little things didn’t concern me anymore and I don’t get as worried or frightened.
I started going to the British Liver Trust’s support groups pre-transplant and have continued post-transplant. They’re very positive, solution- and health-focused, plus the people there are going through exactly the same thing you are – friends, family and the medical profession don’t understand it in that same way. I’ve also got involved in the editing and proofreading side of British Liver Trust publications and want to do more.
I want to live for the benefit of myself and others and it’s almost indescribable how much strength and energy I now have. I’m talking to the guys at Kings Hospital in London about their mentoring programme for transplant patients and with the aim to start a similar one with the QE. It’s not just about health though. Five days after my transplant I was on the phone to Universal Credit in tears trying to sort out funding so I had money to live off when I went home. There was talk of food banks and I had to get my MP involved, so I now want to help people with practical things, like finances, and who to talk to.
The whole purpose of the transplant is to get you to lead a new life and if you can focus on that as your goal you can’t go wrong. I believe positivity really helps your recovery – yes, you’ll have difficulties on the way’ but just focus on getting the other side of the transplant.
And make sure you’re doing what you love because you only get this life once.