David’s story: “I thought you would get a warning sign with your liver, but I never did”

When David's stomach started swelling he laughed it off at first, thinking he was putting on weight from drinking beer. However his GP sent him immediately to hospital where he was diagnosed with alcohol related liver disease. Thank you for sharing your story with us, David

I’ve had serious eczema since I was 14 and doctors have tried everything. The next option was tablets but they can severely affect your liver if you already have an issue with it. A blood test found a slight issue with mine and my consultant suggested I cut down my drinking by about 25%. I was to have further blood tests a few months later by which time my liver should have improved enough for the tablets.

An average week of drinking for me at my club used to be six pints every Monday and Tuesday, four on a Wednesday and Thursday, then six to eight every Friday, Saturday and Sunday. Others drank at least the same or a lot more, therefore I was not concerned. I thought you would get a warning sign that something was wrong, like a pain, and I never did.

I cut down my drinking by 25%, but everything started to quickly fall apart. I thought I had a stomach infection - I couldn’t eat very much and would be sick if I tried to eat more. I didn’t feel well enough for the second blood test so my consultant put it back a month.

My stomach had started growing very slowly, but I laughed it off, thinking I was putting on weight from drinking beer. Then my ankles became swollen and, again, I didn’t think anything of it, but then the swelling started going up my legs to my knees and then down to my toes and was now causing me serious problems in walking. I have a damaged hip and my mobility was bad anyway. The upper part of my arms were getting thinner and my ribs were showing more. Then I noticed that I could feel the bones more in my nose and cheeks.

Decompensated liver disease 

My sister kept telling me to go to my GP and eventually I rang him. He said he wanted to see me straightaway and when I got there he did a quick assessment then said: “This is more serious than I thought” and was on the phone to the Royal Victoria Infirmary. In hindsight I should have contacted him earlier, but thought it couldn’t be that serious.

I was taken straight to a ward where I had a blood test and X-rays and was hooked up to a drip feed with vitamins. I was asleep most of the time, but would wake up for blood pressure tests every four hours and blood tests every five to six hours. I couldn’t eat in the first day or so but eventually the drip started to make me feel better and they cut the blood tests down to once or twice a day.

My consultant sat down with me and said: “You’re a very lucky lad. If you hadn’t gone to the doctor when you did, and been admitted straight away, you might not still be here now.” This was only 48 hours after I had gone to see my GP which was scary.

He said I had decompensated liver disease and they were keeping me alive by various methods such as the drip. He hoped my liver might start regenerating after all the medication he would give me and then it would be a case of how long everything would continue working afterwards. It could be up to seven years, but it would depend on loads of factors.

He said: “You must be a very excessive drinker”. I replied that, although I drank quite a lot more than advised, I would not classify it as very excessive and had actually cut down by approximately 25%. I explained about the previous blood tests a few months ago and after checking them, he said it was very strange that my liver had become so bad in such a short time. I would have needed to be drinking 24 hours a day for the past few months, but he was more concerned about getting my liver to function as best as possible.

The Freeman Hospital in Newcastle gave me a stomach drain which took eight litres of fluid from my abdomen

After three days I was transferred to the liver ward at Freeman Hospital where they gave me a stomach drain which took eight litres of fluid from my abdomen and they gave me a plasma replacement via drip feed which took almost eight hours. By that stage I was managing three meals a day.

A day or so later the consultant said I thankfully now had compensated liver disease –my liver was regenerating, although it would never be how it was. The swelling had now gone down in my abdomen too but it was still affecting my ankles down to my toes. I was taking water tablets every day, but the consultant said it would be a slow process and I had to keep taking them.

So the panic was slightly over, but my upper arms were thinner than my wrists, you could see my ribs through my chest and all the bones in my face. I was having compact protein drinks three times a day to build up the muscles again – it can take six months to a year if you’re young, but at my age (60) it can take two years, or even longer, and you will never regain it completely. They said I would initially still have to have three protein drinks a day once I got home and after a period of time they could probably be reduced to two per day.

The consultant said there could have been an infection in my liver that caused the damage because stomach infections don’t normally result in liver damage, but there’s no conclusive proof after the event.  I have Alcohol Related Liver Disease (ARLD) regardless of how it happened and he said that if I had only two or three pints a day, I could possibly be dead in a month. Otherwise, I could possibly live up to ten years as long as I continued with a strict diet and prescribed medication. I will also always have quite high chance of getting liver cancer which would very likely increase dramatically (possibly 99%) if I had even just a few drinks. I was offered therapy for drinking, but I was confident I could do it myself and I have actually managed to do so 10 months later.

A dietician went through with me what I used to eat before I went into hospital and gave me a booklet that talked about reducing salt intake, no greasy foods and being careful with sugar. She said I should eat every three-four hours, have a snack between breakfast and lunch, then again between lunch and evening meal and not long before bed. She said I shouldn’t sleep too long overnight because my body would start wasting away again. My sister really helped me by making a list of what I could and couldn’t eat – I’ve stuck by that ever since and gave away food that could harm me.

No advance signs of liver disease

I went back to the club three days after getting home and everyone wanted to know where I’d been. They were very concerned and still regularly ask me how I am. At my request the manager told all the bar staff not to serve me alcohol, even if I asked/pleaded for it. Most of the people I drink with have been very understanding and a couple of them give me lifts to and from the club because I was initially struggling to walk with a damaged hip using a walking stick with reduced strength in my upper arms. I have other health conditions too so can’t walk more than 10-15 metres on my own.

I was initially seeing my consultant every four weeks. After four months it was decided that I did not need a stomach drain anymore but if my abdomen built up again I could ring them. I was then getting a phone call every six weeks from the specialist nurse and still have ad-hoc appointments with my consultant. They always congratulate me because I’m not drinking and wish more people were like me.

If you’re a heavy drinker or drinking more than recommended by the NHS, don’t expect to get symptoms. Most men will probably think “Oh, I’ll be ok” but ask your GP for a blood test (if possible every six months) because that’s the only way you can pick up advance signs that something is happening to your liver. By the time you’re getting swollen legs and a swollen abdomen it’s too late.

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