When Kevin developed dangerously high ALT levels that led to a five-day hospital stay, then palpitations and anxiety, he called the British Liver Trust's nurse-led helpline for advice and reassurance. Thank you for sharing your story with us, Kevin
The symptoms began in early November 2022. I was urinating more than once in the night, which I hadn’t experienced before, and my bowels were becoming disturbed. Something was not right so I went to my GP and had a urine test and full blood test.
The bloods all came back within normal range, but the urine had some red cells in it. I was then asked to do another test, by that time it was early December and the results showed the red cells were no longer evident and all the bloods – the bilirubin and ALT protein – were within a normal level. It wasn’t until January 6th that I was called up by the blood unit at 2.30am and told my ALT levels were 3,900! – the limit is 49. I was asked if I was suffering any chest pains or lightheadedness and told to go to A&E.
Having just woken up from a deep sleep it was a huge shock. A moment of trauma was given to me at that point which was then perpetuated for the five days I spent in hospital.
I arrived at the hospital at 2.45am and thought the doctor who had called me wanted me to go to the gastro ward – which I attempted to do – but they told me I had to go back to A&E. The A&E nurse saw my bilirubin level was over 60 and said I should go back to the ward, but when I went back there they said: “I’m so sorry, but you cannot come in”. So, unfortunately, with the state of the NHS being stretched there were some mixed messages and I then had to go back again. It wasn’t easy going up and down flights of stairs.
I went through triage and was told my vital signs were OK and I’d have to wait with everybody else. It was now 4.45am and the nurse said I was looking at a ten-hour wait. My pee was dark yellow, so I kept drinking to keep my hydration levels going. By 7am my partner Mary asked I could be seen any sooner and by 7.15am I was trembling and going into shock. I was then admitted into A&E within 15 minutes.
My protein levels were 77 the maximum and I was worrying
I was on unknown ground, my protein levels were 77 times the maximum and I was worrying. I drank lots of water and went to the toilet every 25 minutes in an attempt to flush out this protein. My quads really started to ache when I was in hospital and I was very weak on my legs.
Each day I was seen by a doctor, they would do an ECG, take my bloods and check my blood pressure. I have a very strong faith so there was a lot of prayer happening.
Hepatitis was mentioned on the second day and I was asked about all the things that cause that – such as my sexual habits – but I’m not promiscuous. Do I do drugs – not at all. They cleared the fact that it wasn’t A, B or C.
I was moved to four or five wards before I finally got to the gastro ward and it wasn’t until several days after I was admitted that I saw the main consultant. He apologised that it had taken him so long, but there were very few beds. He said: “It’s good news. You are a healthy man with a strong liver that’s just become angry.” He said the cause was most probably hepatitis E and assured me that all was going to be well. The virus was self-limiting because my ALT levels were coming down by 300 each day and I didn’t have any acute pains on my right side or my right shoulder. It was wonderful when suddenly my urine started turning white and I knew things were getting better.
I was discharged from the hospital when my ALT level had dropped from 3,900 to 1,300. I was concerned about my heart muscle but was later assured by my GP that it wouldn’t be affected.
When I got home I wanted minimum contact – I didn’t want any flu or covid – and didn’t leave the house for two weeks and when I did I put a mask on. I knew I had to rest and watch what I was eating. The shock perpetuated for about a week after I came out. I went through three or four days where I felt like I was sitting on the edge of a helicopter about to jump out.
I found the British Liver Trust by searching online. The nurse-led helpline is displayed prominently at the top of the home page and I thought ‘This is wonderful’. The nurses would know about what I’m suffering from, answer my questions and basically be my friend for a while because I was feeling very, very isolated.
I rang the nurse-led helpline because I wanted to know how long it would take for my liver to recover
I wanted to know how long it would take for my liver to recover. Is what I was experiencing normal? Are stomach cramps normal and what’s causing them? And is it normal that I’m emotionally affected by this?
I rang at 9.30am, got through straightaway and spoke to Lindsay. That was the moment I knew I wasn’t on my own, that someone knew exactly what I’m feeling and why I’m feeling it. She reassured me, saying “Kevin, this is OK, you’ve come out of hospital, what you are now experiencing are the traumatic after-effects”.
It made me smile and gave me security. She was almost walking with me in those moments.
The second time I rang was at 3.30pm (when the helpline closes) and I spoke to the admin. Then next day I had a call first thing from Kirsty to ask me how I was. I told her I was getting palpitations which was very worrying and asked what was causing them. She said it was most likely shock and that there would be panic from the effects of the trauma coming out. She suggested I get down to my GP and get an ECG so at least I could tick that off. I went within two hours and they did it there and then. My heartbeat wasn’t irregular, so I was pretty reassured.
When I went for a walk with a friend across the fields, I’d gone about a mile and then suddenly thought I didn’t feel right. The nurses told me off – Kirsty said: “Kevin, you’ve been really ill!”
I was given good information regarding diet both from the nurses and the British Liver Trust’s website
I probably called the helpline about four times. Everyone was very supportive and the nurses are wonderful, caring and well informed. They aren’t just nurses, they are counsellors as well and I knew they were with me and very concerned for my welfare.
I was also given good information regarding diet both from the nurses and the British Liver Trust’s website. Fatty foods are like pouring oil on a fire. I used to have a roast dinner on a Sunday, but quickly stopped that and avoid alcohol at all costs. As the recovery continues, I’m watching my diet and eating lots of berries, nuts and avocados.
I would recommend the Nurse-led Helpline from the British Liver Trust 1,000 per cent. It’s a wonderful free service that deserves to be supported. I’ve already sent in my donation and will donate again.
Four months on, I know I still need to rest. On my first full day back at the office I had a flat tyre and realised I had tension in my neck and my anxiety just rocketed. My iron levels were too high and are probably causing me additional stress. It’s still raw for me, but I am getting better.
