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| Whitby late 2017 |
I’m an artist based in south Hampshire,
where I regularly exhibit my pictures created with a mixture of media including
collage and printmaking and regularly go out sketching. I’m drawn particularly
to draw and paint water; rivers and the sea. The photo is of me out sketching.
This was at Whitby. A cold day, with a bitter wind off the North Sea and lingering snow on the North York Moors, meaning a very quick pencil sketch looking towards the Abbey. Appropriately, I'm wearing something purple: I was diagnosed with ITP in summer 2012,
while in my mid-forties. It was the latest thing in a history of longterm
conditions involving autoimmunity / an over active immune system. That began in
young adulthood with autoimmune hepatitis (AIH) which I lived with (unknowingly)
for about five years, during which time, I gained a science degree from a
leading UK university and was among the top in my year, despite being very
unwell. A few weeks after graduating, I was admitted to Kings College Hospital
in London, where I subsequently had a liver transplant. I’m now the same age my
mother was at the time and next year will be the 30th anniversary of my
transplant. The full story of that is on my ArtyTransplantee blog, but since
then, I’ve been taking immunosuppressants to prevent rejection of the donor organ;
and well used to hospital appointments, pills, pills for the pills and blood
tests. You could say that by the time I developed ITP, I was better prepared
than many. Nonetheless, that and the low points from AIH onwards have hit hard:
psychologically as much as physically, with prolonged periods of anxiety during
and after the low points. Memories flowing from bad vibes in hospital from AIH
days onwards are still vivid. Thankfully, the AIH hasn’t recurred; due to a
continuing low, 5mg dose of prednisolone; and taking tacrolimus has kept the
rejection problems I had during the 1990s in check. Nonetheless, I was
surprised to develop ITP, and also before that Crohn’s colitis, while already
taking immunosuppressants.
My ITP seemed to come on suddenly: until late
July 2012, I’d been feeling well in myself, going out walking and my art was
thriving. Then, just as the weather was summer was switching from being
anomalously wet to heatwave, I was admitted to hospital in south Hampshire with
saucer size bruises, a purple rash including on my face and bleeding in the
nose and mouth.
My stay in hospital this time was ten days
rather than the ten weeks around the time of my transplant. I was very well looked
after, treated effectively and again had real awareness and appreciation for
everyone working in the NHS, invariably under pressure. Nonetheless, it’s an
experience I don’t want to repeat. Unhappy memories and parallels from the past
added to the perfect storm of noise, heatwave and people around me being very
unwell and distressed. All along with the broad spectrum side effects of
steroids, including effects on mood and great difficulties sleeping, which I
know other ITPees without exception find so hard to deal with. All in all, the
mental bruises took much longer to heal than the big OMG purple ones.
When I found out how low my platelets were
– 3 points – I was scared. Among the parallels with my previous liver disease was
a real risk of internal bleeding because my blood wasn’t clotting, though there
low platelets weren’t the prime cause. I was lucky to get a quick diagnosis of
ITP, by the Haematology and Oncology team within a day of being admitted to
hospital, from a bone marrow biopsy. The team had also heard of the condition
and, even though it is classed as a rare disease in the UK, they had seen other
people with the same. It took me a while, though, to get the letters in the
right order and remember what they stood for. It sounded more like a
technophobia affliction, so it was simpler to tell people I had a low blood
count or bleeding disorder.
They tried treating me with steroids: my
prednisolone was increased to 60mg daily. It soon became clear that I was among
the I was among the awkward, unresponsive, refractory 15% - 20% of ITPees: my
platelet count barely moved and bottomed out at 2. I was given a two day
infusion of intravenous immunoglobulin (IVIG). This made me very headachy and
nauseous, but it worked: the platelet count increased from 2 to 67 and I came
home at the beginning of August. When the count dropped again four weeks later
and I was readmitted for another round of this, my Haemotologist was able to
contact Professor John O’Grady at Kings: he’d been on the liver team when I’d
had my transplant and I’d occasionally seen him as an outpatient when he became
head of the Institute of Liver Studies. He recommended a change in
immunosuppressants. After introducing mycophenolate mofetil (MMF), 1g bd my
platelet count quickly returned to normal; but there then followed a gloomy, messy,
muddy autumn involving not only platelets crashing in a fortnight from 167 to
12, but also a recurrence of the rejection problems I’d had during the 1990s,
requiring a short stay in Kings in late 2012 for a liver biopsy. From that, it
was clear I needed to take both MMF, for my ITP, and Tacrolimus for my liver,
along with the low dose prednisolone. The MMF has since been reduced to 500mg
bd, but this combination of immunosuppressants has kept my ITP and liver issues
in remission for over five years. My platelet counts have been normal or near
normal. At my last six monthly visit to the liver clinic in August 2018, they thoroughly
reviewed my medical history, were generally pleased and said best not change
any medications, to avoid rocking the boat. In the follow up letter from the consultant I saw, "I have congratulated her in her meticulous oversight of her condition and her upcoming 30 years post transplantation.",
My main side effects have been repeated, ongoing low white cell (neutrophil) counts, prompting repeat blood tests for the Haematologist and GP, who are both more wary of me taking MMF longterm than the liver team who see many transplantees who have been taking it as one of three immunosuppressants for years without major problems. It was the latter, though that reduced the dose when they caught a particularly deep white cell drought after a feverish cold in February 2016. The most disruptive thing has been a light-sensitive migraine-like headache, meaning sunglasses indoors; black out curtains in the artroom to reduce the glare; and cloudy days coming as a relief. That came on pre-ITP, lasted throughout my forties, but seems to have lessened on the lower dose of the MMF. I also have unexplained eczema and am currently dealing with the usual things women have to deal with by 50-ish.
Otherwise, I’m flowing and painting on,
with a healthy active life involving my art, walking, and though I haven’t
directly applied my degree to my art or earlier scientific work, it’s given me a continued understanding and key
fascination with how the world and the universe work. My particular interests
there are now Earth and environmental sciences which have informed happy
holidays and days out.
