How were you diagnosed with autoimmune hepatitis and lupus? Did you have any symptoms?
After going to the doctor with symptoms of slight hair loss, I was diagnosed with lupus in early 2012, aged 20. After starting medication for lupus, I was having regular blood tests and one of these (in December 2012) detected elevated liver enzymes. I was then referred for an ultrasound which showed I had a cirrhotic liver. Following a liver biopsy in March 2013, I was diagnosed with autoimmune hepatitis. I had no other common symptoms of liver disease.
How did you cope?
Looking back, I coped very well. The diagnosis of lupus was fine, as I virtually had no symptoms. Whilst I was naturally upset and frustrated with the diagnosis of AIH and cirrhosis, I continued with my chemistry degree without taking time off my studies.
The liver disease diagnosis was a big shock, especially when beforehand I had considered myself generally healthy, and it did take time to learn to accept it. With time, I realised that I was in fact very lucky to be able to continue living such a healthy life with these conditions and am constantly grateful for this.
The biggest issue to deal with was losing most of my hair following treatment with immunosuppressant medication for my liver condition (which has sadly never grown back).
Had you heard of these conditions before your diagnosis?
I had heard of lupus, as I knew the singer Seal had the condition. I had never heard of autoimmune hepatitis, and ignorantly assumed that cirrhosis was only caused by alcohol or drug damage.
What have you been told about your prognosis?
I have been told that if I continue to respond to the immunosuppressant medication and manage to avoid future flares of my hepatitis, then I should be able to lead a relatively healthy life. Having a cirrhotic liver obviously comes with its own challenges on top of the other autoimmune conditions, and there is less scope for further liver damage (i.e. through future flares). It is therefore likely that I may need a liver transplant at some point in the future.
I am unlikely, however, to be able to have children, which is particularly upsetting.
Did you feel the information you were given was adequate?
Yes and no. I feel that my consultants explained my conditions very well to me, however I feel that I was left with little support in terms of the psychological impact of diagnosis. I didn’t actually even receive any leaflets about my condition either, which would have been much more helpful, and far less scary, than looking information up on Google.
What treatment have you had?
I currently take a mixture of immunosuppressant drugs (azathioprine and prednisolone) to dampen my immune system and stop it from attacking my liver cells. I also take a drug for lupus (hydroxychloroquine) to reduce the progression of the disease.
I have twice-yearly ultrasound checks to make sure there are no tumours in my liver (cirrhosis leads to an increased risk of tumours). I have had endoscopic banding to eradicate varices in my oesophagus. These are caused by portal hypertension (when the blood can’t pass through your cirrhotic liver very well, it builds up pressure in the main vein). I did suffer a bleed in my oesophagus about two years ago, which required a couple of blood transfusions and a fortnight off my work. Needless to say it wasn’t a pleasant experience at all!
I take blood pressure tablets for the portal hypertension too. I also get bone density (DEXA) scans to ensure my bones are not too weak from taking steroid tablets.
How would you describe the NHS care you have received?
Fantastic. My consultants have been a great support over the years. When I have been in hospital for treatments, the professionalism and caring attitude of the majority of staff has been exemplary. It sounds cliché, but I cannot thank everyone who has helped me enough.
I do think there is a disconnect between GP services and consultants though, and as you become familiar with the system you begin to realise there are a lot of inefficiencies within the NHS itself. However, we are incredibly lucky to have the health system.
What do you find the most difficult aspect of having autoimmune hepatitis and lupus?
The anxiety of not knowing when your condition is likely to get worse. I could technically suffer from another oesophageal bleed at any time. Also, not being able to have a family is quite a difficult issue to deal with. Losing my hair has also been a source of anxiety for me.
I also get frustrated by the general public’s preconceptions about liver disease. When I mention I have cirrhosis, people are often confused because they associate it exclusively with alcoholism. ‘Cirrhosis’ and ‘hepatitis’ have negative connotations and I think this needs to be changed.
Have these conditions impacted your lifestyle?
By and large, I am very lucky in that I live a full, active life with these conditions. I get tired quite easily so avoid late nights but otherwise I don’t think you would know that I have these conditions. Obviously I don’t drink but as I never drunk much before my diagnosis, this has not been an issue.
I like to think that having these conditions has made me a more positive person who tries to make the most of every opportunity I can. When you’re young, it’s easy to think you’re immortal, but when you realise this isn’t the case, it changes your perspective on life.
Have you been told about any clinical trials, and would you consider taking part?
There are clinical trials for cirrhotic patients, but I think I am ‘too healthy’ to take part in most of them, as they are for people who are at very end-stage disease progression. For clinical trials for lupus and AIH, I think having cirrhosis rules me out of a lot of them. So I’m in a bit of a grey area!
I am very interested in keeping up to date with clinical trials though and am always keen to be taking part if I am able to.
What is your greatest hope/fear for the future?
I hope that there will be a treatment for cirrhosis, or better treatments for autoimmune hepatitis which don’t come with dangerous side effects. I fear that I will get much less healthy than I am now and not be able to work and live the life that I lead currently. I’m also really scared of hepatic encephalopathy, when your liver can’t process toxins and they cause brain damage. But – on a positive note – I try to just take each day as it comes and live life to the full!
