Over the past few months, we’ve been sharing the story of 17 year old Mo, who was born with PFIC 2 and underwent a liver transplant when he was nine. Here Mo shares the final part of his story, life after transplant.
Life after liver transplant is different. As I entered my home after so many weeks away in hospital it felt strange, but nice to be back home. The first morning at home, I felt so good. Waking up in my own bed, my own room, everything looked so familiar. The sights and smells were more vibrant than I remembered. Suddenly everything seemed more colourful, more joyful. I felt quite energised. And I did something that I always wanted to do but had previously been unable to. I started jumping all over the sofas! I had energy and I could move. My new liver was so much smaller and lighter. My movement was no longer restricted . I felt so free, so alive.
Once we were home, it was imperative that I took my medication regularly, every four hours. Then at one of my hospital appointments they reduced my medication, but the NG tube was still in one of my nostrils. I was having energy feed every night so that I could continue to gain weight. I did start to eat small amounts of food more regularly and after a few weeks the NG tube was taken out at the hospital – another milestone! To start with I would go to hospital appointments every week, then the time intervals in between my appointments became longer.
For the first few months it was difficult because I had to keep my distance from other family members. My parents would keep me in a separate room to protect me. My family used to visit me but stay in a separate room. We would communicate through glass doors but on some occasions I would escape and greet my cousins!
My reduced immunity meant I was unable to attend school straight after my transplant. So the local Education Authority arranged for a personal tutor to come to my home for a few hours every day, to help with my studies. I had a very gradual return to school. To begin with, I could only go for two hours every day. But after about two months I was able to go back full time which I enjoyed because I had missed all my school friends. It was nice to be reunited with them all and with the teachers.
So eight years on, my new liver is still regularly monitored and I have had a few biopsies. I still attend my local hospital for regular blood tests every three months and attend six- monthly appointments at Birmingham Children Hospital. The quality of life has inspired me to be able to do so much more physically and mentally. I enjoy cycling, playing football and going to the cinema with my friends. I don’t feel exhausted all the time as I used to be before my transplant.
I have had a lot of information and support from the staff at Birmingham Children’s Hospital, Liver Direct and Children’s Liver Disease Foundation.
In conclusion, I would advise you not to let anything hold you back. No matter what condition you have, you can succeed in life. I’m living proof of that, I went on to do well with my studies and have passed all my GCSE’s and now I am in the sixth form doing A levels. So let my story inspire you. You can succeed. Do your best.
Finally, I would like to thank all the hospital staff for taking diligent care of me and I would like to thank everyone in my family and friends for their love and support. Especially my parents.
