Rebecca was diagnosed with autoimmune hepatitis two years ago and stays as fit as active as she can, even taking part in the London Marathon in aid of The British Liver Trust and raising more than £3,000! Thank you for sharing your story, Rebecca
I was diagnosed with coeliac disease in back in 2011, but had gone a very long time before I got another autoimmune illness. In 2017 I joined a local running group RunDMC and started training for a half marathon and was feeling really, really tired. I went to my GP who asked for full blood count. The results showed a problem with my liver, so the doctor asked me to come off the pill because it can cause issues once you’re over the age of 30, but another blood test still showed a problem. When my doctor then did a virus blood test it showed I had Primary Biliary Cholangitis (PBC) and I was referred to hospital.
The consultant at Norwich Hospital confirmed the diagnosis, gave me ursodeoxycholic acid (urso) tablets and said I would have to take four of them daily for life. They gave me leaflets and told me about the British Liver Trust. I then had a three-month follow-up appointment and everything was fine, so they said let’s take it six monthly and then yearly and everything was still good.
When Covid came and we went into lockdown, my husband wouldn’t even let me go to Boots to pick my prescription up. He did everything, I stayed at home and would go out into the garden with the children. PBC doesn’t put you at risk, but my husband didn`t want me going anywhere when Covid hit.
In June 2020 I did a 5k run for a virtual event and the next day I couldn’t get out of bed. I spent a week like that. We just thought it was because I had a bit more to do than normal – home schooling was new to everyone and I had to keep the children entertained – but by the end of that week I was turning yellow. We rang 111 and they said I needed to go to hospital. My husband took me to our nearest one where blood tests revealed my liver level was very high. Luckily they had my results from the year before, the ALT had been 37 then and was nearly 2,000 now.
After two CT scans the hospital decided I had liver cancer
They admitted me and sent me for two CT scans from which they decided I had cancer. It was awful being told that and I feared the worst. I wasn’t allowed anyone in the hospital and had to relay this information to my husband who was then relaying it to my family. My twin boys were just over seven-and-a-half then and I was scared they wouldn’t have a mum to grow up with.
The hospital knew about the PBC and that I was under the consultant at Norwich Hospital, so they transferred me there because apart from saying I had cancer they didn’t know what was wrong with me. For four days before they transferred me they didn’t do anything, I was just taking up a bed space.
From A&E onwards I’d had the good-old classic ‘How much do you drink a day?’ from doctors and nurses. It happened every day and more than once a day. Each one was trying to get an answer out of me because were just seeing liver levels elevated and thought it was obviously to do with drinking. They kept asking because they didn’t think I was telling the truth. I had the same thing back in 2017 when I first became ill. Did I drink, did I take drugs, had I been abroad and got an illegal tattoo. Well, I don’t drink and haven’t been out of the country since I was three years old.
It makes me feel horrible and that they think that I’m lying to them. Doctors need to educate themselves more and know that not all liver conditions are alcohol related. Some liver diseases are caused by alcohol, but people who don’t drink or drink very little also have liver conditions.
I was taken over to Norwich at about 3.30am and three times that morning they took blood from me. I felt like a pin cushion. When my consultant came to see me she said: “You haven’t got cancer, I can tell you near enough 99 per cent sure, I think you have Autoimmune Hepatitis.” AIH terrified the life out of me, I had this really big issue that if I caught Covid it I would die. (But I’ve since had Covid and was absolutely fine, I didn’t even have the antiviral drug because I felt really good. I’ve had five vaccines now and it just goes to prove that they do work).
My consultant said: "You haven't got cancer, but Autoimmune Hepatitis"
I was sent for a liver biopsy and the consultant said she would start me on steroids. I was discharged with six boxes of prednisolone and I have to take six every day and also omeprazole for the tummy, AdCal to help with my vitamin D and calcium as well as my urso tablets. The consultant wanted to see me a week later in outpatients and to have my bloods taken to make sure everything was OK.
At that appointment she confirmed that it was Autoimmune Hepatitis with an overlap of PBC. I asked her why it had happened and she thought it was because I’d got the PBC under control and my liver just thought ‘What else can we give you’.
The consultant apologised and said I would have every symptom going because I was so young and I have, but we have learned to deal with it now. The weight gain has been the hardest – more so on my face, it’s now round and I’ve never been used to having a round face. I had my bloods tested every other week until Christmas of 2020 to make sure everything was under control, but after six weeks of being on the steroids I was getting this awful pain around my liver area and my ribs.
My consultant thought my body was saying I’d been on a high dose of steroids for a long time and we needed to start lowering it. We dropped 5mg of steroid and she introduced the mycophenolate at 500mg twice a day. I went to see her ten weeks later and she said my blood work was coming down nicely, so the dose stayed the same. But when I next went to see her we’d got stuck again, so another immunosuppressant, tacrolimus, would have to be introduced. From there everything’s been going OK. It’s not been an easy ride, but I’d like to get to the lowest does of the steroids possible.
I had a liver biopsy last year and my liver just has some light scarring – it’s at the very first stage of fibrosis. The consultant said it was the best outcome I could possibly have considering how bad it was back in July 2020. I feel very lucky not to have cirrhosis.
When I was first diagnosed with autoimmune hepatitis, people would ask me why I wasn’t at work. I didn’t want to tell anyone because just saying the word hepatitis made me feel dirty and that people would think I’ve been doing things I shouldn’t. But as time has gone on over the last couple of years I have told people.
"I decided to run the London Marathon for the British Liver Trust because it helped me and my family
I still run now, but I say that loosely, the first year after being out of hospital I walked everywhere. My friend signed me up for the 2021 Virtual London Marathon and we walked it in 8 hours and 24 minutes. It was then I decided I wanted to go to London and raise some money for the British Liver Trust because it helped me and my family. I knew I wouldn’t be able to run the whole London Marathon because of the after-effects on my liver, but I had no need to run it and decided to walk instead. I filled in the form and was rejected at that start because nine people had applied for the Trust’s six spaces, but just 68 days before the marathon someone dropped out and I was offered the place.
So we went off to London – me, my husband and two children. I knew no one else was coming, but on the day, all of sudden somewhere between mile four and five, I heard my name being called and when I looked up I saw my sister and her husband. I ran to them and gave them a big hug. Further down the road were my mum and dad – I hugged them and cried because I didn’t know they were coming. Audrey and Abi from the British Liver Trust were there supporting us too, as were people from other charities. If you’ve got your name written on your T-shirt they’ll all shout for you.
I completed the London Marathon in 6 hours 21 minutes and nine seconds and I walked the lot of it. For the first 16 miles I was in the 13-minute mile category and when I’d finished my average pace was 14.5-minute mile. There were times when it was hard, but it was an amazing day and I would definitely do it again.
The day after I needed something to hold onto when I walked because my legs didn’t belong to me, but three days later when I was walking the children to school they were saying “Mummy, slow down, you’re going too fast for us.” The pain had gone – I had a few blisters on my feet but nothing major.
If I have a full-on week or do too much, I perhaps feel tired for the next week or so, but I don’t let my conditions rule my life. Liver disease won’t stop me achieving what I want to achieve. I’m not going to think I can’t do this anymore. Whatever your goal if you take small steps towards it, you’ll get there.