Mike’s story: “I was seeing colours differently.”

After he was made redundant, Mike started feeling unwell. After dismissing his symptoms for a while, he eventually went to the doctor with encouragement from his family. He was immediately sent to hospital and was diagnosed with cirrhosis. Thank you for sharing your story, Mike.  

Thankfully, I responded to the therapy in hospital.

On August 10th 2020 my life changed forever. I had finished work due to redundancy at the end of the previous year and had been on the verge of getting a new job. Then the COVID pandemic really ramped up and it became a waiting game. Fortunately, I had plenty of savings and my wife was working and doing well so there wasn’t any particular drama.

I had always enjoyed alcohol and drank too much – way outside of NHS guidelines but I always continued to work. Alcohol was at the centre of my social life – watching football, going to concerts, meeting friends, during foreign holidays. Everything I did outside of paid work revolved around alcohol. I have to say despite a few scrapes, I thoroughly enjoyed it.

So, for the first time in my life, I had time on my hands during a locked-down British summer. We had not seen the likes of this pandemic before. I would go for walks, safe in the knowledge that when I got back, I could have a few (sometimes a lot) of ciders in the garden.

Symptoms

I had noticed, going back to the February of that year and possibly earlier, some changes happening to my body. All of a sudden, my urine went dark, almost tea coloured. I put it down to dehydration. I was gaining weight. I thought I was just getting fat but was to be proved wrong later. I was becoming overwhelmed by fatigue and rarely awoke feeling refreshed. But other than this I was OK.

I continued to put on weight – my legs swelled to quite a size and my belly was growing. In the January I had noticed some isolated leg swelling in one calf and went to A&E who checked for deep vein thrombosis (DVT). There was no mention of any potential liver problem. I had no DVT and the hospital discharged me saying there was nothing of concern and to contact my GP if things got any worse.

The other quite disturbing thing I noticed, not long after the leg swelled, was an alarming loss of night vision and it was sudden. I walked into the home bar one night and under low light I could hardly see. I wanted to play a bit of darts but the board looked very dim. When I looked up at the night sky, on clear nights, I could see no stars. The garage at the bottom of the garden was invisible. I sleep quite close to a window which has a cream-coloured curtain that is clearly visible usually. I couldn’t see it. At night the bedroom was total blackness apart from the LED lights from the TV and Sky box.

I also was seeing colours differently. Everything began to take on a green tinge and I was constantly complaining about the picture on the TV. I constantly changed the brightness, contrast and colour. But everyone had the colour of the Incredible Hulk and I couldn’t watch programmes or films that had dimly lit night scenes because I couldn’t see them.

"A couple of friends did comment on my weight gain"

Because we were locked down, I didn’t venture out too much. I did go for some walks which would make me feel heavy and breathless. I did start to understand that something was seriously wrong on another couple of outings. I’d arranged to meet some friends in a pub which is about two and half miles down the road, and, as the weather was good, we decided to walk. Half way there I had to stop and rest and by the time I got there I was breathless. A couple of friends did comment on my weight gain but again I just dismissed it.

Later at the end of July we went for a five-day trip to Bowness in the Lake District to celebrate a friend's 60th birthday. This was another trip that revolved around boozing and sitting in pubs all day. (The lockdown had been partially lifted for a short time). Bowness is quite a hilly area and I just struggled to cope. I had to buy a walking stick to help me get around and my vision problems were persisting and friends had to lead me back to the hotel at night. One friend had said I looked jaundiced. I said I thought it was gall stones (ridiculous). I made it through the trip but it was a real struggle in an area which I had been to regularly in the past, and had no problems.

On the weekend prior to me being admitted to hospital some of Debbie’s family came to stay with us. It was a lovely summer's day and, once again, the day consisted of drinking in the garden followed by a gathering to continue in the home bar as it got chilly. By this stage my legs were so swollen I could hardly lift them over the doorstep. I put on the baggiest clothes I could find in an attempt to hide my vastly changed body shape.

On the evening of Sunday 9th August, I was in the garden suffering from severe right upper abdominal pain. I had been Googling what was going on and all roads led to cirrhosis. But I wasn’t prepared to face that. “May as well carry-on drinking, there’s no way out of this” I thought.

Debbie came to me and said I looked unrecognisable and told me she was going to call the GP the next day. I tried to implore her not to do it. But I knew deep down that I couldn’t carry on. That’s what I couldn’t face. The thought of a life without alcohol.

The next day I got up and walked up to the shop to buy 12 cans of cider. I had given up. My mother was driving down the road and saw me. When I got back there was my mother, step-dad and Debbie sat in the garden and they implored me to see a doctor. They were not going to take no for an answer.

So, an urgent appointment was made and I was physically examined. The GP said: "This is liver failure you need to be admitted to hospital straight away". Stubbornly, I waited a couple of hours and then Debbie drove me to A&E with the GP letter.

Diagnosis

I arrived at A&E and the hospital was locked down so I had to go in alone. I was put in a room with a nurse who looked after me for the whole afternoon running various tests. I was feverish and she gave me some pills. I was put on oxygen. After a few hours I was transferred to a holding ward and had to be COVID tested before moving into the main hospital. I had my own isolated room, and my iPad but I was already suffering from some degree of alcohol withdrawal as I was shaking. I was given pills to help with this.

At 6am the next morning for the first time a doctor spoke to me. He had my test results. I’ll never forget his words: “Your liver is absolutely knackered and it can’t recover”. He told me some of my results which were way outside normal ranges. He said a cirrhosis diagnosis would be confirmed following an ultrasound but it was inevitable. I asked if I could recover. He said it was possible that I could die in the hospital. It would depend on infection of the ascitic fluid. He said I was very seriously ill.

I was moved to an acute medical ward and told I would be moved to the specialist gastro/hepatology ward later on. Shortly afterwards, I was wheeled away and had a large needle inserted into my abdomen. They explained that they needed to understand whether the fluid around my stomach was infected (this causes a condition called spontaneous bacterial peritonitis, which can be fatal). They couldn’t get it to work on my right side so took it from the left, leaving me with two big holes in my abdomen. They covered them in bandages. I also had an ultrasound scan on my liver and a chest x-ray. I was put on an intravenous drip of something called Pabrinex and given something for alcohol withdrawal.

I remember hallucinating on my second night in hospital and I had a distinctive musty smell on me. This is a sure sign of liver failure and I now know that the hallucinations were caused by hepatic encephalopathy. This is where the liver is not clearing the blood of toxins and they go to the brain causing neurological symptoms.

My blood tests were terrible. My bilirubin reading was 188 against a normal range of one to twenty. My albumin reading was 4 against a normal range of 20+. My blood clotting was awful. They measure via something called INR. Normal is 1 mine was 2. This explained the nose bleeds that I had been getting.

I was put on Vitamin K to help my blood clotting – foul tasting stuff they put under your tongue with a syringe. I was also started on diuretic pills and Thiamine. I was also water restricted which, along with the diuretics, made me feel an intense thirst.

My urine was still dark and foul smelling but I was starting to feel a little better. After a week I was transferred to the specialist gastro/hepatologist and moved to his ward. The doctor came to see me one morning. He said I had to stay in hospital (this was to be my third weekend). I argued the toss with him but was put firmly in my place. Although the test of the fluid had come back negative, he said I was still at risk of catastrophic bleeding or further liver or kidney failure. He insisted I stay another four days.

I made some pals in the hospital and despite being told I had been close to death we had some laughs, particularly on the hepatology/gastro ward. I had my iPad and watched some test cricket and struck up a friendship with a fellow patient who was diagnosed with Hepatitis C. These people got me through the time – no visitors were allowed and we were all pretty ill but could sit up, talk and have a laugh.

I was discharged on August 24th, diagnosed with decompensated (end-stage) alcohol-related liver disease. The doctor told me if I continued to drink, I would die and it wouldn’t take long. He said that the future prognosis was up to me.

I was hospitalised again in February 2021. I woke up in a stuporous state. I did not know what was going on around me. I was taken to hospital by ambulance and asked questions like ‘where do you live, who is the prime minister, who is your wife?'. I could not answer any because my blood sodium had dropped to a serious level, triggering hepatic encephalopathy. I had what they call the 'death smell' on my breath known as fetor hepaticus. This is where toxins such as ammonia should be cleared by the liver but make it to the brain and lungs. Worst outcome is coma then death. Thankfully I responded to the therapy in hospital.

Since then, my health has been up and down. I take several medications and my condition is confirmed as end-stage liver disease. I have two varices in my oesophagus which have to be looked at every year by an endoscope. It's not very pleasant. If these bleed, I can bleed to death very quickly and many cirrhotic patients die suddenly because of this.

My bloods are a little better. It’s now December 2021 and my bilirubin has come down but I am still jaundiced. I have portal hypertension so will still retain fluid if I don’t take diuretics. I have an enlarged spleen, shrunken liver and various skin signs of liver disease. The whites of my eyes often have a yellow hew to them.

There are obviously mental issues with all this. I frequently become depressed and inconsolable. But I’m a strong person. I know I am.  The long-term prognosis is highly variable. The liver can improve a bit or fail completely. I may need a liver transplant in the future but many patients die before this is an option.

I have not had a drop of alcohol since August 9th 2020. Life is difficult because I am so fatigued. My career appears to be over. Finished at 50.

All of this because I liked to drink. You do not need to be an alcoholic.

Think.

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