Cliff’s story- Autoimmune Hepatitis
This is Cliff's story about his experience with autoimmune hepatitis, after it going undetected for more than twenty years.
My condition is called autoimmune hepatitis. The doctors think I’ve been suffering from it for more than 20 years without any outward signs. If we all had liver function tests every year, maybe it would’ve raised alarms to further investigate. Autoimmune hepatitis is only diagnosed with a liver biopsy.
My own case is rather common in autoimmune hepatitis patients in that symptoms are hidden, masked or thought to be other illnesses. It’s a strange condition that can affect children or middle aged people such as me. Like all autoimmune conditions, females are more at risk, and the ratio of male to female patients is 1:4.
I had been feeling under the weather for around 2 months and was gaining weight for no reason. I was always tired, sleeping for 12 hours or more, and had no energy. I even lost my sense of smell and taste. My appetite completely went; I could only consume protein shakes. My abdomen was swollen, tender to touch, and I could only sleep on my back sitting up.
I woke up on 8th October 2012 with jaundice. I looked like Homer Simpson.
I saw my doctor on the 9th October 2012 who thought I had gallstones and referred me to hospital. He said he could do blood tests but thought it was better for the hospital to do this. He wasn’t overly concerned. The hospital said it would be 12 weeks before they could see me so I went private. Turns out the doctors finish rounds in the public hospital then cross the road to practice privately.
“When my friends first saw me, they joked saying I had fallen asleep on a sunbed”
Anyway, I first saw a general surgeon who ordered blood tests and an ultrasound scan. My bloods showed elevated levels and the scan showed cirrhosis of the liver. The general surgeon referred me to a gastroenterologist. He was going to order new blood tests because he thought the results must be flawed. He never organised new blood tests. He also ordered a CT scan which he said was inclusive so wanted to do an MRI which was booked for 4th January 2013. To me, he was just looking for tests to run so as to run up billing. I went back to my GP who said he couldn’t help me as I was under the care of the gastroenterologist specialist.
My wife had been made redundant in September 2012 but was fortunate to secure a new job in London. Our eldest son was living in Camden so she stayed in his spare bedroom during the week and returned to Wrexham at weekends. I was staying in Wrexham with our youngest son who was sitting his GCSE exams in 2013.
Because of my wife’s redundancy, new job, and my retail shop not performing well, I tried to keep my feeling unwell under covers. I think it’s a male thing, we are supposed to be strong at all times.
Because I have a high pain tolerance, I was able to hide the true extent of my illness. I often got tight pains just below my ribs; I could feel my heart rate accelerating, which after a short time sometimes 10-15 minutes, would ease off again. Other times I would have a metallic taste in my mouth and the next day my stools would be very, very dark, almost black and very smelly. When I didn’t have a metallic taste in my mouth, my stools would be very pale, almost white.
“I didn’t tell my wife I had been diagnosed with cirrhosis as I wrongly thought only alcoholics can get this”
I was only a social drinker anyway. I actually stopped drinking in September 2012 because I couldn’t taste anything. Something inside me kept saying this wasn’t caused by drink. I told my wife they hadn’t found gallstones so were continuing tests.
My youngest son and I traveled to London on 22nd December 2012. There was a rail replacement service between Chester and Crewe because part of the line had been washed away. Not the best start to the holidays. Anyway, once in London the whole family were together. I made excuses that I needed to rest so they should all go shopping on Oxford Street. Later, we went to the cinema but I fell asleep which they all laughed at. I just said I was getting old.
By now I was sleeping for 12-14 hours a night. Reluctantly, I went to Oxford Street on Boxing Day but I had to sit in a coffee shop whilst everyone was shopping. They kept coming back to check on me and remark that I hadn’t drunk my coffee, or that I was sleeping again.
That night I was in a great deal of pain but didn’t tell anyone. I spent 3 hours in the bathroom and the pain was getting worse all the time. It felt like my stomach wanted to explode out. I said it was like the film, Alien.
At this point, about 4am, I knew something serious was happening but I still wanted to hide it from my family so I agreed to call 111 who advised us to go to a walk in clinic.
When we arrived, I was ushered to the front of the queue by the other patients. I must have looked terrible. The doctor was shocked at my condition and said we needed to get a taxi immediately and go to hospital. She quickly did an examination and wrote a letter. She also phoned the hospital to warn them I was on the way. She said the taxi would get me to hospital quicker than waiting for an ambulance. Even the taxi driver was shocked and helped my wife carry me into A&E where they were waiting for me.
I had drips, needles, doctors and professors looking after me. They tried to give me morphine but it couldn’t get into my liver and it drained through the varices I have into my stomach, where I threw it up. I was admitted to the hospital as I had high liver function tests, varices, ascites, oedema and possible hepatic encephalopathy (H.E). That’s when advanced liver dysfunction can cause unconsciousness and comas.
The hospital tried to contact my doctors in Wrexham without success so I had new CT & MRI scans, ultrasound scans and blood tests. I had 2 interns with 6 inch needles trying to get samples of fluids in my abdomen without pain relief. Immediately one professor suspected I had autoimmune hepatitis; he later said my blood results were “off the chart” and that he had never seen someone with such high levels that was still conscious.
Late afternoon I had 14 litres of ascites with bacterial infection (SBP) drained from my abdomen. I remember the feeling of relief. They did banding of 3 varices and the next day, I had my first liver biopsy (transjugular method) which showed multi lobular necrosis. I was put onto the ward where all the seriously ill liver patients are until 27th January 2013. It is also where the liver transplant patients are. 3 people passed away from liver failure while I was on the ward. Scary stuff.
Things were rushing by in a haze; I was confused and concerned for my family. I thought I was going to die. On 31st December I was informed by a liver transplant co-ordinator that she was going to prepare me for further tests and that I might need a liver transplant if things didn’t improve. It was such a shock, I couldn’t believe what I was hearing. The doctor came and explained everything. A short while later I met my wife when she came to visit. I basically cried from shock, I didn’t know what to do or think. Another patient in the coffee shop saw I was in distress so he and his wife gave us some reassurance that this hospital was the best and that things would improve.
In fact things did improve, albeit slowly. I was going to the hospital once a week for blood tests, which became every other week, then every month. Now it’s every 6 months. I was on Prednisolone for 3.5 years and only suffered a “flare” once in 2014. Now I just take azathioprine and have 6 month blood tests with ultrasound scans. I’m still a bus driver and I won a Gold Award at the 2016 UK Bus Awards for my risk assessment maps.
I have remained in London to this day. I had to close my retail shop in 2013 after 11 years in business. I kept my youngest son in our Wrexham home whilst he did his A-Levels at 6th form, after which we rented out our home. We rented a small 1 bedroom flat in Chiswick for 2 years as it was near my wife’s work place in Chiswick Business Park, plus I could get the overground from Gunnersbury station to Hampstead Heath to the Royal Free hospital. Rent in London is expensive, £1,500 p.m.
It was all very stressful; we only had my wife’s income, we were spending our savings and couldn’t see a bright future at all. I recovered enough that I was able to work again so in November 2013, I re-trained as a bus driver and started work in December 2013. In December 2014, we used what remained of our savings and purchased an apartment in Brentford next to Kew Bridge overlooking the river Thames.
My liver is severely damaged, but not so much that I can’t work. I refuse to be beaten by autoimmune hepatitis. I think it’s my positive outlook on life that continues to make me strive for improvements.