Two months ago, my life changed in a way I never expected it to. I was diagnosed with a lifelong incurable autoimmune disease (autoimmune hepatitis – your body attacks an infection that isn’t there therefore making it sick) and my world fell out from underneath me. Daily medication, crappy side effects and everyone asking me about my future plans which I couldn’t answer because my health stood in the way of every decision I could or wanted to make. I’d be lying if I said I took it all in my stride and I didn’t struggle to understand it all.
People told me to be grateful I wasn’t dying or that my condition wouldn’t shorten my life and I was but as my friend put it, my diagnosis was still a ‘game changer’ and it was a lot to get my head around. In all honesty, I’m still trying to get my head around it. Whilst I accept that I have to take medication on a daily basis, it all feels rather surreal right now. However, things finally seem to be changing for the better…
Recently I had my first follow-up appointment with the specialist since I went on to medication and I’m very pleased to be able to say that the news is nearly all good.
My liver is completely back to normal! The scarring will always be there (therefore I will be at risk of permanent liver failure) and won’t heal but my liver, on blood results, now looks no different to someone else who is perfectly healthy!
The initial plan was to go on to steroids alone (to quickly reduce the inflammation and settle my acute symptoms) for 5-6 months reducing the dosage on a monthly basis (when it comes to steroids, it’s always trial and error on length and dosage depending on the condition and the patient etc).
I started on 40mg which is a very high dose but I’m happy to report that just 7 weeks in, not only have I been able to reduce my dose by half (as my fortnightly blood results showed I was responding well) but I have now started the permanent medication! It takes two months of taking the new pills to build up in my body so I’ll still need to take steroids simultaneously but I’m weeks ahead of the plan and that makes me feel very good!
The second (and most important) piece of good news is that I have been given the green light to travel again in a couple of months time. I’m not sure how I feel about that just yet as a lot has happened in a short space of time but it’s great (and scary) to think that it’s now becoming a very real possibility!
Now to the not so amazing news…
Despite the lifelong medication, I can still get flare-ups of my condition but ironically, won’t know that I’m sick. The only way I will discover it is through one of my regular blood tests. When I questioned my consultant about this he made a startling confession – ‘this is why 50% of the patients I see to make the initial diagnosis already have cirrhosis of the liver’. So I am INCREDIBLY thankful that my condition was mild when it was caught despite my liver scarring being moderate already. However, I’d be lying if I said that it doesn’t feel a slight betrayal that my body could be sick but I won’t even know.
The irony being, it wasn’t until I was explaining my health update to a family member later that day that something huge clicked in my head about my condition. I couldn’t work out how I had been sick for months, likely years, before I went to Australia but had become so ill , so quickly once I’d arrived (despite the consultant explaining that people with my condition don’t know they’re sick because it creates no physical symptoms) and then it dawned on me…when I took medication for my skin in November (when I first became ill with jaundice etc), the drug I took specifically affects the liver and if it was already badly damaged, it was no wonder I was experiencing so many physical symptoms. And then, when I became acutely ill the second time in February, it was right after I had my first alcoholic drink which, again, affects the liver. And so, ironically, by taking medication and alcohol, I made my body sick enough to create physical symptoms to alert me I was ill. It’s a surreal experience to be thankful you made your body weak enough to discover you were ill on a scale you weren’t truly aware of.
Ask me how I feel about everything and all I can answer for now is that I’m grateful. I’m still attempting to get my head around the diagnosis and because I’m still taking steroids/new medication on a ‘trial and error’ basis, nothing feels settled enough for me to be comfortable with shouting ‘I’m great’ from the rooftops just yet despite how pleased I am with the results. I’m too nervous to commit to saying ‘I’m heading back out into the world’ when I don’t know how I’ll react to the new medication and decreasing the steroids etc but it’s now a very real possibility and that’s more than I had a few weeks so I’m very thankful for that! Whilst I refuse to use the term ‘everything happens for a reason’ when it comes to going to Australia and discovering my illness, as I said above, there are moments and situations that I can be thankful for within my health journey.
I still get moments or days where I’m tearful and think ‘why me’. I’ve never been a big drinker, (I barely even have a drink once every six months), I don’t smoke and I don’t do drugs; my biggest addiction is naughty food. However, I take my pills every day and I’m doing ok.
As my auntie said to me:
In theory, things can only get better now but in practice there is still a little niggle of ‘what if’.