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| Spring Downland - Collage on 10cm Square canvas. Copyright: Joan Lee |
We tend to mark birthdays and anniversaries in multiples of ten, but I also take the twenty-eight calendar cycle to be a milestone (seven days a week, leap year every four years). My mother was also fifty at the time of my transplant. In the midst of a busy autumn preparing artwork for 2018 exhibitions; reflecting on recent trips to Scotland; changing family dynamics; and first-world agro which is frustrating me but I won't repeat here; I haven't had time to write much, or revise what I've written before. Except to say, that I've generally been keeping well, for which I'm very thankful. Thankful firstly to my (anonymous donor) who gave me the gift of life. Around my 25th TP anniversary in 2014, I wrote this as if a letter to my Donor:
My Transplant 25 years on
I'm thankful, too for all the care and compassion I've received whenever I've been unwell; at King's College Hospital as an inpatient pre- and post-transplant and subsequently as an outpatient. Likewise my local hospitals and GP. This all comes under the NHS, which has always been under lots of pressure from high demand and limited funds. Everyone who has looked after me has been amazing, invariably doing a good job under difficult circumstances. Without a publicly funded healthcare system, free at the point of delivery, I don't know where I'd be. Then there was the tremendous support from friends and close family. In many ways, it's been harder for my parents. As a family, we all very anxious whenever anyone is unwell. We were all deeply affected by the loss of a young loved one in the mid-2000s. It then hit me that while my parents (in the late 1980s) were breathing a sigh of relief that I'd had a successful liver transplant and was heading home a few weeks later, there was another family out there somewhere grieving for the loss of their young son.
At forty-four, I'd lived longer with my transplant than my own liver. Re-reading my mother's thorough account of our family history, has made me realise how lucky I've been to get this far, and how relatively cushy I've had it. I've now outlived my great grandfather (mother's side). He took one of his names from a river in Cumbria, near where I enjoyed some happy early childhood holidays and more in adulthood. He was himself was one of only three surviving children of a family of seven living in NW Cumbria in the late nineteenth century. No easier either for other branches of the family tree. In the shocked, bleak days before my transplant, it really helped me to remember that there was, and is, always someone somewhere worse off. Usually I didn't have to look far. After the op, I felt very anxious, even with what were minor, normal and manageable blips. Always worse when on my own and not hearing how other people on the ward were getting on.
These are links to my ArtyTransplantee blogs, written in 2013; and also my ongoing art and water blogs:-
My Story - Living (Unknowingly with AIH), in my late teens-early twenties during the 1980s.
Last March, I wrote at length about my young adulthood living with AIH. It was emotionally difficult writing it and looking back on it all. For now, then I've left it offline and concentrated on my art and other things which interest me and keep me busy for now.
My Story - Liver Transplant and After
Thankfully, the AIH has not recurred, but because of it, I still take a 5mg daily maintenance dose of prednisolone reduce the risk. I had further issues during the 1990s with toxicity to the azathioprine I was taking during my first few years post-transplant; and then chronic rejection affecting my bile ducts, where I still have a narrowing (stricture). There was a time in the 1990s when I thought I might lose my transplanted liver because of it, but thankfully, I was saved by a change in immunosuppression, from cyclosporin to tacrolimus (Prograf). At the time of my transplant, tacrolimus, was almost still in the experimental stages, in Japan, I believe. Thanks to its early successes in stopping or curbing liver transplant rejection, they started using it at King's College Hospital more widely in the early 1990s. By the time I started taking it in 1997, their level of experience was about the same as with cyclosporin during the years before my transplant. It took time, but my rejection stabilised and, by late 2000, Kings were unable to detect it. But for a blip in 2012, all my liver tests have been normal.
Though my rejection stabilised, I went on during my thirties and forties to develop Crohn's Colitis, a form of inflammatory bowel disease (IBD). I first noticed symptoms not long after I began taking tacrolimus but was too embarassed to act on them, until blood tests at the liver transplant clinic showed I was anaemic (low haemoglobin and ferritin. I was referred to a GI clinic at my local hospital; and probed at both ends. After the probe-round-the-back (colonscopy), I was diagnosed and treated with steriods and mesalazine (Pentasa) in 2003. For a while before then, embarrassing dashes to toilets (or failing that bushes). So good to be rid of all that! I responded to the increased prednisolone within a couple of days. I got my energy back. It was if the river hadn't known how low it had gotten until the replenishing rains came.
Since then, that has been stable and inactive, though my recent blood tests have indicated low iron levels which might or might not be related.
I then enjoyed nine years with no major health issues. In that time a couple of nasty bugs, including a belated bout of chickenpox in 2009. Otherwise, I'd almost forgotten I'd had a transplant or that there had ever been anything wrong.
Then in summer 2012, apparently out of the blue, I developed nose and mouth bleeds, followed by a purple rash and bruises all over my body, some almost the size of saucers. My GP took one look at me late one July Tuesday and said I had low platelets. After a blood test showing a platelet count of just 3, I found myself back in hospital, this time my local hospital. An emotionally trying experience, bringing back memories from my time in hospital in the late 1980s. There were things in common: the six o'clock phone call with blood test results indicating drop-everything-and-go-to-hospital; and being put on steriods and not responding to them. I was relieved, though to receive a quick diagnosis: ITP - autoimmune thrombocyctopenia. As with AIH, autoantibodies attacking my own cells, this time platelets. Blood cells more easily replaced than livers, but initially I was frightened; and anxious for a over a year afterwards. For more:
My ITP story, written during the year after my diagnosis.
Thankfully my ITP has remained stable, and symptom free for nearly five years now, with platelets counts usually in the normal range. The last, yesteday, wsa 178. Reassuringly, they held up well after my mycophenolate (MMF) dose was reduced last year. I've still had some lower than normal white cell (neutrophil) counts, but as that doesn't seem to have given me any problems (more infections) my Haematologist is letting that lie for now.
There have been, and still are a few irritating, disruptive things which I've put up with for a long time, putting them down to side effects of medication and the usual stuff which goes with being female and a certain age. Among them: constantly itchy skin - various forms of itching at different times; Worse during the past 8 years. Throughout my forties, migraine-like headaches and light sensitivity, particularly in the lighter, brighter days of spring and early summer.
Enough on all that stuff. Links now to my Water and Art Blog. This last entry, gives a feel of my combined passion for the two, with some sketches from the Keswick area, done last month:
http://artywater.blogspot.co.uk/2017/10/sketches-from-keswick-area.html
