Following a trip to Japan in June 2004, I was diagnosed with autoimmune hepatitis and was treated with high dose steroids. After six months, I was in remission. In 2009, as I was being discharged from the hepatology clinic, I noticed on the blood form that my haemoglobin reading was 11. I was immediately put in the care of the haematology department.
I had had some symptoms of breathlessness when climbing stairs to my car on the 6th floor of the carpark and some tinnitus, but had largely ignored these.
Once I was under the care of the haematologists, despite treatment, immunosuppression and steroids, my condition deteriorated rapidly and I was transfusion-dependent within two months. This allowed me to exist, but by November 2009, I had to stop work. In March 2010, I underwent anti-thymocyte globulin treatment and spent three weeks in hospital. My bone marrow recovered and I was in remission until July 2012 when I started experiencing the same symptoms again. I knew there was a problem, but managed to survive a family holiday in Rhodes before I told my wife that I thought it was the same issue.
I was transfusion-dependent by September and put on the bone marrow transplant list immediately. An easy decision to make as treatment was again ineffective.
I received a bone marrow transplant during the Christmas holiday. My sister was my bone marrow donor. I spent six weeks in isolation in hospital before my marrow started responding and then only very slowly.
The road to recovery was long and rocky (although as the patient you don’t really notice it on a day-to-day basis because of everything that is going on). Because I was a mixed chimerism (both donor and my cells in my blood), I was on immunosuppression for almost four years, tapering, increasing, then tapering, before we decided to stop it and monitor it with regular serial bone marrow biopsies (I have had 12 in total).
After 6 months, I suffered a major setback (thyroiditis) which eventually led to thyroid failure. This necessitated more steroid treatment and I experienced one of the nastiest side effects of all the treatment I had ever had. Slowly my condition improved and I went back to work after 12 months, even while still being treated. Once I was free of immunosuppression, my condition improved significantly.
I am currently in remission. My bone marrow function has not changed in seven years.
In 2016, I started cycling. Prior to my illness, I had played sport from the age of eight to a very high standard, everything from football and rugby to cricket, running, golf, tennis and squash. Cycling had me hooked immediately and became an instant obsession! I participated in the Transplant Games in Newport in 2019 and won a Silver medal in my age group. Post pandemic I won Gold at the Leeds Transplant Games (competing for Team Wales) and qualified to represent Team GB & NI in the World Transplant Games in Perth. I won a Gold medal and two Bronze medals in Perth, which was a truly incredible experience sitting amongst 2,000 transplant patients.
I have since become a central part of the Transplant Team Wales organisation, with our main aim being to promote exercise in the transplant population as a way of improving wellbeing. This is aimed at all levels from beginner to elite transplant athletes.
There is no doubt that sport and exercise have been a massive part of my recovery, motivation and mental wellbeing. I compete regularly in both Transplant Sport and in able-bodied triathlons and sporting events. For my age, I am at an able-bodied level in fitness and performance. To get to this level requires dedication and an elite athlete training regime. Only 1% of Welsh transplantees participate in Transplant Sport (far too few). There needs to be a recognition of this and we are working with government agencies and the NHS to promote participation.
Family and friends are critical in your recovery. They do the hard yards that you, as a patient, don’t notice during your brain-fogged ‘me, me, me’ phase. You don’t notice much, but they see you ill every day and without their support, it would have been impossible to recover.
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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