Shaping Research: Christian's Story
I jumped at the chance to help and give something back to the medics who had essentially saved my life
About me
I am a 53 year-old, former teacher, now university student adviser at Birmingham City University Student's Union. I live in Walsall with my fiancée Jane and her daughter Priya and our four cat children. We go to church regularly and my faith is important to me. I like to go to the theatre and cinema and I'm an avid model railway enthusiast with my dad and a stamp collector. Some might say boring but I say therapeutic.
I received a life saving liver transplant in February 2018, a day which will live in my memory forever. I was refused a transplant three times because I was considered a high risk patient. Told I wouldn't survive the anaesthetic, and then told I might not survive the operation due to not being fit enough. I thought I would probably die before getting on the transplant list. Then Dr (now Professor) Armstrong entered my life. He offered to put me on an exercise programme he was running in an effort to get me fit enough to have the operation. He also told me to lose weight to show the transplant MDT team I was serious. I jumped at the chance. I worked with a Physiotherapist called Alice who was fantastic and lost almost a stone and a half in weight. I was listed in December 2017 and got my transplant and rebirth in February 2018. I survived the anaesthetic, was told I'd be in Intensive care for a week or more, it was actually a few days, and discharged from hospital after seven days when I had been told I would be in for about two weeks. All thanks to the exercise programme. I lost almost nine stone since the transplant and now exercise regularly.
How I got involved in research
One of the physiotherapists who had helped me, Felicity, asked if I would be able to help with a project Professor Armstrong was setting up. This was the Exalt project. A project to see if an exercise programme can help in frailty with Liver transplant patients. I jumped at the chance to help and give something back to the medics who had essentially saved my life. I also met Karen and we shared stories and the reasons we wanted to help.
I Co-sponsored the project as it was put forward for funding and approval alongside Karen Rockell as the patient sponsors. We attend regular meetings to discuss what is happening and how the project is progressing. I helped with training days at the start of the project to give to the medics a patient perspective of how the transplant process affects the recipients before, during and after the transplant. I also attend regular patient participation meetings where we discuss what is in patients interests and how information can be passed from medics to patients in a way that can be easily understood.
Why it matters
I want Transplantation to be not as scary an experience as it currently is. Yes it is a huge thing to go through but with the right outlook and attitude, it doesn't have to be as scary or frightening as it currently is for lots of patients. I also want more people to survive the transplant process by being fitter and less frail. ExaLT has the potential to do that.
I've learnt that we can all play a part in our own health journey and that little changes can have massive consequences for us. Life is fleeting and it's not worth getting stressed about everything. Things that used to stress me out and get me worked up, don't any more. I live for each day and thank God for each extra day I am given.
My message to others
Don't be scared, even though what is happening to you is massive. Talk to the doctors and the physios and other health workers, they all want to help. Don't be afraid to get upset and show your fears and emotions. Ask questions, lots of them. No question is too silly or stupid. Trust your carers who are going through a massive ordeal as well as you. Everyone wants to get there for you and to help and care for you. Finally, be nice to yourself and trust in God.