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| Coloured pencil drawing done at Kings - Copyright Joan Lee |
More than twenty years on, I still can't believe how lucky I was to get my transplant so quickly - within hours of being put on the waiting list by the liver team at Kings College Hospital. Obviously, I was more critical than I'd realised beforehand. Even so, there is an increasing shortage of donor organs, meaning many people die on the waiting list. Before even making the list, people have to be assessed to see if they are fit enough to survive what is massive surgery. My operation took ten hours. I've described the AIH / run-up to the transplant in a separate post. At the time, I was glad to have been blissfully ignorant of the potential prognosis and just how unwell I was at severe risk of internal bleeding: both because of the high pressure on my hepatic portal vein and my by now "tiny" liver riddled with scarring / cirrhosis, was not making enough vitamin K, meaning my blood wasn't clotting. My enlarged spleen, taking my platelets down to about the 20s wasn't helping clotting either.
On his ward round one Tuesday morning in October (six days after his registrar broke the heavy news that I'd most likely need a new liver (see post about AIH), the consultant, Dr. Roger Williams (the then head of the liver team) confirmed it and put me on the waiting list. Afterwards, the registrar said they really had to get moving "within the next few weeks". I was put near the top of the waiting list. I saw the transplant co-ordinator, Kirsty. I didn’t know what to say, but she asked if I’d like to meet someone who’d had a transplant and told me that the post-transplant lady in the bed next to me when I first came to Kings was now back home.
It was the anaesthetist who told me, in the early evening of that very same Tuesday, while I was in the dayroom of the ward, watching Sooty and Sweep on the TV, a childhood favourite. When the ward sister said he wanted to see me, I thought it would be a briefing on the lines of "This is what I'm going to do when you have your operation, date who knows."
No - my operation would be that night.
I don’t always take the unexpected well, but this time I remained calm and just did what the doctors and nurses told me. The rest of the evening was tests and pre-med. The ward staff tracked down my parents who rushed to London to be with me. As I went off to sleep, I pictured one of my favourite places: crossing the Severn Bridge en route to happy holidays in the Forest of Dean and south Wales.
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“It’s all over now.”, was the first thing I heard, from the doctor looking after me in the Transplant Room (one of the intensive care rooms on a larger ward caring for liver patients / transplantees) when I came round from my ten-hour operation - massive surgery, done overnight. Shortly afterwards, my parents came to see me. They’d spent the night in the rooms at the back of the ward for relatives. They were able to stay there for my first week post-op. We were all very grateful. It meant they could see me throughout the day during those difficult early stages post-op, with less coming and going from London than there would have been otherwise. On my first day post-op, my father, a fellow artist, sat by my bed and told me about his walk in nearby Ruskin Park, among the autumn colours. While I'd been under the knife, drawing of the view through the window of their room helped keep his mind occupied. To begin with I was on a ventilator, meaning I couldn’t talk, so communicated with everyone in writing. High on steroids and morphine, I wrote reams and reams. I regularly wanted time checks, too as I was very disorientated, cut off from the outside world, without any natural light coming into the room. Once the painkillers and relaxants were reduced, I felt very uncomfortable. For the first couple of days off the ventilator, I still had to wear an oxygen mask as I still had fluid on my lungs.
By the weekend (the op in the early hours of a Wednesday), I began to feel a bit more comfortable. I was well enough to sit in a chair when my brother came to see me. I was still disorientated from all the drugs and everything. On the Sunday night, a minor blip with a fever, This turned out to be rejection, but it settled down with an increase in the steroids and I felt better on the Monday. Numerous drugs and drips, catheters / drains were removed. One week on, now in a side room I felt well enough to draw again, though my hands were shaky due to the cyclosporin immunosuppressant. I was now being introduced to other transplantees who were further down the line. One lady was recovering from her second transplant. The man I saw on the night of my transplant was now on his feet and walking round the ward. I also saw another lady, like me, in her early 20s, six months post-transplant, looking really well. Soon, sutures from the stitches on my operation scar were removed. Resembling the car logo, it’s often called a Mercedes scar. I was touched by the numerous get well cards I received from friends, relatives and people I’d known at uni’. I had many visitors, too, among them my grandmother, nearly 90.
Like everyone else, I had to contend with the side effects of drugs, but I was lucky not to have any serious complications during these early stages. It helped me physically at least, to have youth on my side. I came home from hospital after five weeks. Just in time for my Dad's birthday and mine two weeks later. Within six months I was enjoying trips away around England and Wales. It took me longer to recover mentally: there was the shock of living (unknowingly) for all that time pre-transplant with a serious, very nearly fatal, chronic illness, I was uncertain about the longer term, particularly as I knew there were longer term risks from the immunosuppression.
In the longer term, I generally felt fit and well, though a couple of problems affecting my new liver surfaced a few years after my transplant. Firstly, my liver reacted badly to one of the immunosuppressant drugs I’d been taking, azathioprine. When that was withdrawn, I developed chronic rejection, focused on my bile ducts. This took some time to diagnose, bringing worrying unsettlement and agro, including several short stays in hospital for liver biopsies etc. This while I was busy with other things - among them getting married - which meant I took my eye off the ball. By the late 1990s, I had jaundice once again, low mood and frequently felt tired, just as I’d done with the AIH. At one point, I even wondered whether I’d need a re-transplant, but thankfully I stabilised when my immunosuppression was switched from cyclosporin to the similarly acting but more powerful immunosuppressant, tacrolimus (Prograf). This was just coming in around the time I had my transplant.
It took a bit of time, about three years, for the rejection to fully settle down, but thanks to the tacrolimus, it did. "I've got some good news for you...", the doctor told me at the liver clinic following up a liver biopsy in 2000. No sign of rejection in the biopsy. I had no further liver problems for twelve years, though the tacrolimus didn't stop me developing inflammatory bowel disease (Crohn's disease) and a new autoimmune disease, this time affecting my blood - I'll cover that My Story - ITP and All That post.
My donor remains anonymous. All I know it is he was a young man killed in a road traffic accident. I have always been conscious of the sad fact that, whereas my parents and other relatives saw me get through the operation, another family somewhere was grieving. This hit me hard a few years ago amid the grief over the loss of a young loved one among my own family circle.
