Kim’s story: “There’s light at the end of the tunnel.”

When she was diagnosed with autoimmune hepatitis (AIH), Kim assumed the worst. Now she's enjoying life again, and wants to share her story with others.  Thank you, Kim. 

As someone who uses alternative medication, I felt uneasy about side effects of my treatment.

In 2018 I was feeling unwell, very fatigued and experiencing a lot of body aches, particularly in my hands. Over time, the symptoms got worse and I was unable to manage simple tasks due to the pain.

At this time I was also suffering with chronic fatigue and a painful distended gut. I already had a diagnosis of irritable bowel syndrome and fibromyalgia. After many GP visits and several blood tests later, I started to ask for copies of my blood results which showed raised ALTs, but the GP was not concerned. Some tests were showing signs of infection too. Most symptoms were put down to fibromyalgia but there was a nagging inside of me that something just didn’t feel right.

This went on for about 18 months. By now I was experiencing a very strange feeling under my right rib, like being pregnant when a baby is pushing its feet into the rib cage. I got a referral to a private consultation with a Gastroenterologist who diagnosed me with diverticular disease. Whilst he was giving me this news, I asked about my bloods and ALT levels. He agreed they were a bit raised. I asked to have this investigated so he referred me to a hepatologist.

I was sent for scans and blood tests and this is where my AIH journey began. The consultant gave me the diagnosis and began telling me how I needed treatment for the rest of my life. Firstly steroids then an immunosuppressant and that, with treatment, I would be ok. Despite this, the only thing I could think about was 'how long do I have left?'.

The doctor did not know exactly what had caused me to have this condition but felt it could have been triggered by glandular fever which had shown up in my bloods. I left the hospital and, still in shock, Googled the condition before I’d left the car park, which I advise no one to do!

I started treatment - steroids for six months then a immunosuppressant, Azathioprine, was added and the steroids were gradually reduced. There are potential side effects to all medication, but as someone who uses alternative medication, I felt uneasy about this and the long-term effects. But I didn't really have a choice and I needed to discuss the herbal medication I was taking with my doctor. I had to take this prescribed medication to get well and stay alive, so I did and have done ever since 2019 and have been able to continue taking vitamins.

It took about a year before the discomfort in the rib area went but I discovered this was partly down to diet and that I was lactose, gluten and dairy intolerant. My hepatologist kindly prescribed medication without lactose which has made a significant difference to how I feel. All my meds are now almost totally free of lactose. I do get discomfort in that area from time to time but generally it’s something I have eaten that has caused it. I am being looked after with routine bloods that were weekly to begin with, then reduced to monthly and then quarterly.

I can call the liver nurses at the hospital if I have any concerns and have the support of an AIH support group and the British Liver Trust that provides useful information and nurses who I can phone should I need advice.

I’m now living with this condition and its side effects, and learning to adapt to a new way of living. I only have a rare alcoholic drink and try to relax more. I changed my stressful job and cut my hours which has made a difference to my wellbeing. Fast forward to 2022, I eat healthy, which helps my gut and liver, and I am currently in remission. I remain on Azathioprine and stay hopeful it continues to work for me. I hope my story helps anyone on this journey to stay positive and get on with living, be it in a new way. There is light at the end of the tunnel.

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