Back to square one

14th June 2022. My second diagnosis of autoimmune sclerosing cholangitis. Since 2012 I have been battling this liver disease. The bane of my life something I have let hold me back from living life itself, it led to me having a liver transplant and 2 years after having my surgery it is back like it had never left. 

My 25th year on this planet with a second lease of life having received a healthy liver gave me hope that I would be able to take life on and catch up on years I had missed out on due to my struggles with health problems. 

I started to notice a few symptoms around March 2022 when I recognised symptoms from before I had the liver transplant, the yellowing of my skin and eyes (Jaundice) the itching of all parts of my body, and genuine fatigue and tiredness that left me not wanting to do anything. Getting to work was becoming a struggle, and I felt isolated from friends as I felt I didn’t have anyone to talk to who would understand what I was going through. 

I continued to battle on each day hearing. ‘Stay strong’ but I didn’t want to be strong anymore, I wanted to be someone who didn’t have to be ‘Strong’. Every day struggling to wake up, to find a reason to get out of bed to even do what makes me happy. 

I would have hospital appointments every 3-6 weeks whether it be to be injected with medication, for scans, blood tests, or to speak to my consultants who had noticed a rise in a particular blood test result of which the normal levels are below 40 but my results were coming back to be over 1000. It became a sort of hunt to figure out what was causing these levels to elevate. Everything needed to be ruled out so I was sent for more blood tests, scans, more procedures. It became tiresome.

I was sent for a biopsy at the beginning of June which would confirm that my 2012 diagnosis of autoimmune sclerosing cholangitis had returned. My immune system was again attacking the new liver that I had received. There was no explanation as to why this was happening and I couldn’t be given any indication as to if I could stop it. My consultant who is very open with me explained that the research into the condition that I have is still ongoing and that there is no quick fix.

As the conversation with the consultant went on I began to think back to when I was first brought into the hospital in 2012 and how my journey had come full circle and I was back where I started 10 years ago. 

At this point, I have been struggling to come to terms with what my future holds, whether I can be cured, if I need another transplant or if I have to live like this for the rest of my life. Trying to understand how life is going to be living with this disease as an adult, trying to navigate life and everything that comes with that. 

Thinking about all that I have gone through to get to a point where I felt things would be better and now coming to a roadblock that has me doing a complete U-turn to the beginning is what frustrates me the most. Having unexplainable emotions of anger sadness and confusion all at once. 

I feel I have to put on this brave amour and somewhat hide what I’m going through because general life needs to go on and I want to feel normal in some way by enjoying the things I do most, but coming home and breaking down because of the pain that I go through emotionally and physically.

But I’m still here fighting this battle and will continue to do so no matter how hard it gets, this condition is part of me and has made me who I am today, through all the struggles, the Keiran I am today is a better person because of it.