Here is some collage work, done four years on from my ITP
diagnosis. I call it Wordplay – working with letters / characters/ type with a
mix of letterpress, stencil, rubber stamping and newspaper cuttings. These are
in a long format, 42cm x 16cm sketchbook. For more, please see entries in my
Water & Art blog where there are examples of postcards, posters and folded
books I have made this year.
See ITP and All That
for my full story, written during the first year after my diagnosis, when I was
still very anxious; the difficult time around my diagnosis and its aftermath
still very much at the forefront of my mind.
I admit it rambles on somewhat. These collages sum it all up, in a more
concise way.
Some people talk about their experiences living with long
term health conditions, and life more generally, as a journey. I’d liken mine
to journey on water, steering my boat through choppy waters avoiding the
whirlpools and being swept along by the current during the more turbulent
times. The wordplay features a plot of my platelet count since the diagnosis. There
are peaks, troughs and blips. If comparing with a plot of river flows against
time, a hydrograph, the flow almost dried up four years ago: the count being 2
or 3 (units billion cells per litre of blood), and unresponsive to steroids.
After refreshing rains - treatment with IVIG and additional immunosuppression - it
subsequently rollercoastered with highs of up to 190, but there were also two
further dives, resembling perhaps an intermittent flash flood prone river amid
a dry climate. The flow eventually steadied once the Haematologists and the
liver team found the best combination of immunosuppressant for me as an ITPee and liver
transplantee: tacrolimus (Prograf) and a maintenance dose of prednisolone for
the transplant; and mycophenolate (MMF) for the ITP. Thankfully, I have been
symptom-free since 2012, reflected in the much steadier platelet plot 2013-15.
If a hydrograph, the profile during that time resembled a chalk stream: I live
close to some of the famous ones in Hampshire, crystal clear water.
Sticking to the best combination of the aforementioned drugs
has been the key thing to controlling my ITP and preventing transplant
rejection. Like all drugs, immunosuppressants
do have side effects. Throughout my forties, I’ve been prone to light-sensitive
migraine – I sit at my laptop typing this wearing polaroid sunglasses – put down
partly to my tablets. I seem to have mislaid white cells (neutrophils) periodically,
too, potentially putting me at increased risk of bacterial infections. Wary of the side effects, my Haematologist
discussed reducing and ideally stopping my mycophenolate at clinic last year,
though we agreed best not rock the boat. The registrar I saw at the transplant
clinic said leave alone, not wanting to risk any liver problems resurfacing.
Then, last February, a particularly foul, feverish cold rocked the boat (see
last entry) and forced the issue.
The ensuing blip in platelet count (falling from about 160
last autumn to 114) and the more worrying white cell drought (neutrophils 0.5)
could well have gone unnoticed but for it being caught in a blood test at the
liver transplant clinic. On their advice, I stopped my mycophenolate for a few
days, then restarted it, but on a lower dose (500mg bd). My white cell count
recovered, though it has still been variable. As mycophenolate seems to have
been the key thing keeping my platelets comfortably normal, controlling my ITP,
I was worried about the count diving again if I reduced it. Low enough even for
the bleeding / bruising symptoms to resurface . Yet, completely contrary to
what I’d have expected with an autoimmune condition, the count initially spiked.
During the first week of March, the count increased to 219, my highest as far
as I know for 10+ years. A few weeks later it drifted back down to the level it
has been during the past three years (156). I caught a bug again in May - just
as I was due back at the transplant clinic for another blood test. This time, my
worries about blood stream levels turned out to be unfounded: the platelet
count just over 200 and my white cells were normal.
Catching bugs has been a bugbear. During the first 18 months
after my diagnosis, I was particularly paranoid about viruses, in case the
immune response to the virus involving antibody-bearing lymphocytes also triggered
the release of anti-platelet auto-antibodies. Though advised to have the annual
flu’ jab as a liver transplantee on immunosuppressants, I missed out for two
years, worried that might trigger a drop. It now looks as if the platelet dive
in October 2012 was mainly drug-related, but it also came shortly after my flu’
jab. I was nervous anywhere indoors and busy, worried I might catch something. When I eventually caught a cold from my other half, it came with nothing more than the usual bunged-
up irritations. Likewise bugs of all seasons in 2014-15. My anxieties eased: if
any effects on the blood stream at all, they were blips and not dives. After a spring cold which was slow to shift, I changed my mind about the flu’
jab and had it last autumn. I didn’t want to risk the regular but potentially
serious complications of flu’. Then, after last February’s fevers, my GP hammered
this home. I plan to book a jab this autumn.
This bug related paranoia, along with anxiety, loss of
confidence and intrusions of unhappy hospital-related memories were all part of
the hit I took psychologically during the months after my diagnosis. Thanks to
the subsequent period of relative stability, health matters have resided further
at the back of my mind, enabling me to knuckle down to art and other matters.
For the future: Fingers
crossed - Platelets up – Steady, healthy flows - Be Arty and Ride on. This wordplay poster after Douglas Adams Hitchiker's Guide to the Galaxy.
Finally, a link to My Purple Patch – Anthony’s
story. The author is Anthony Heard, a member of the team running the ITP
Support Association in the UK. http://anthonyheard.simplesite.com/http://anthonyheard.simplesite.com/
