Everything changed for me in March 2006. My GP sent some blood for tests after I visited him following a stomach upset, it wasn't particularly serious, but something didn't feel right and looking back I can't put a finger on exactly what it was. Two days later, I received a call from my GP asking how soon I could get back in to see him. It transpired that my blood samples set off all kinds of alarm bells ringing at the pathology department.
I was referred to the local general hospital, initially to the Haematology dept as the test results pointed to a blood disorder. After a series of blood tests, bone marrow biopsies and tests for conditions as varied as A-Plastic Anaemia and Leukaemia, I was given an ultrasound scan which picked up that I had a very enlarged spleen and all the signs of a diseased liver.
Referred to the Hepatologists, the initial diagnosis was that I had Auto-Immune Hepatitis.
I began a course of steroids and immune suppressants and for a while the disease seemed to stabilise. I was still able to run, and cycle, and even squeezed in a skiing holiday, even though the Haematologist had told me to avoid any contact sport as my blood probably wouldn't clot if I was injured.
However, over time things deteriorated, I had the first of two cellulitis infections in my leg, I started to itch, accumulated ascitic fluid, developed varices and had a mild but none the less scary episode of encephalitis. I lost a lot of weight, and most of my myscle despite forcing myself to eat as much, and as well as I could. Eventually, I turned from someone who had previously been extremely fit and active, into someone who could only take the stairs one at a time. I couldn't sleep properly because of the pressure of the fluid against my lungs, and was hospitalised during three separate bouts of Spontaneous Bacterial Peritonitis (SBP).
I should say that over the course of this deterioration, I had been put onto the transplant list, and received fantastic care from the staff at my local General Hospital and at the transplant centre.
At the transplant assessment, I was told by the consultant that I had a 50% chance of surviving 12 months without a transplant, and that was before the three bouts of SBP.
One evening, after 10 months of waiting, I received the call from the transplant coordinator to tell me that there was a suitable donor liver on the way, and that I should get to the hospital ASAP.
I went into theatre at 5am, and awoke in ICU about 24 hours later. For some reason I didn't register the airway pipes, drains and multitude of other tubes, and reached down to my stomach to make sure that the operation had actually gone ahead, i felt the dressings and somehow I knew that everything was going to be OK.
After about 36 hours I moved from Intensive care to High Dependency, and then a couple of days later onto the Transplant Ward. By his time I was already up on my feet and exploring, refusing to take the lift up and down the five flights to the cafeterias. I was discharged exactly 2 weeks after arriving. One of my treasured possessions is a picture of me walking my dog on the beach just two days after my discharge looking like a different person.
That was two years ago, and in that time I haven't had a single day sick, I returned to work after three months, slowly building back to full time, and I'm now back to running each morning, taking my holidays on he hills and doing everything that I could six years ago, albeit at a slightly slower pace and with an occasional nap in the afternoon, but maybe that's just because I'm 6 years older. In actual fact I'm better than I was back then, as all the little symptoms that I had never recognised, such as dry lips, persistent dry cough, oily skin, congestion, all disappeared before I even woke up in ICU, never to be seen again.
By the way, it transpired that I actually had a Biliary Transport Disorder and not AIH, and that it was probably always there, but just took 37 years to manifest itself. I'm told that it isn't yet classified, and as such doesn't have a name yet, but i'm looking forward to the day when I can find out exactly what it was.
If I post again I promise it won't be quite as long as this, but hopefully anyone else out there with a liver disease or waiting for a transplant can see that there is light at the end of the tunnel.