Blood Stream Wordplay

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/

ITP Support Association - http://www.itpsupport.org.uk/

PDSA – Platelet Disorders Support Association (US) - http://www.pdsa.org/

British Liver Trust - http://www.britishlivertrust.org.uk/

Living by Numbers

This is one of the poster I made during the week leading up to Rare Diseases Day, 29th February 2016 an event marked all around the world to raise awareness of the impact various rare diseases can have on people's lives - all ages, including children. Many of  these rare diseases are debilitating, in most cases there's no treatment, or there is, but it's too expensive. Invariably they have a genetic or autoimmune basis. Though any one disease may be rare, taken together, they affect many people (estimated at 350 million globally) and 1 in 17 people in the UK. Among them, is ITP, with which I was diagnosed in 2012. At the time (as outlined in blogs I wrote during 2013), it was very scary and anxiety-provoking. During the subsequent three years, however, my blood count has been relatively stable and I've generally had a much easier ride than many people living with the longterm health conditions, rare or otherwise.

The poster was hand-printed a week before Rare Diseases Day, with oil based printmaking ink using wooden letters acquired from an art shop stuck onto clear acrylic blocks, and rubber alphabet stamps. It was all very labour-intensive, least of all clearing up at the end of it all. All the more so having a  particularly rough cold, which has somewhat rocked the boat.

When I did these posters, I had in mind the times, like 2012-13 when I've been preoccupied by some of the numbers which come up in blood test results - the platelet count wrt ITP, levels of liver enzymes. The calendar geek in me, too, noted that Rare Diseases this year fell on Leap Day, Monday 29th February, so I thought I'd mark that. However, I hadn't expected it to be so prescient: somewhere along the line, I seemed to have mislaid some white cells. For the first time in over 25 years post-transplant, I got a call from the liver clinic over a weekend. I was shocked at how low they had gone wanted a re-check asap. Though I've heard the phrase Treatment by Numbers (numbers in test results taking precedence over how well the patient might be feeling), I didn't think this was the case here, or if it was, their concern was still justified. Though the subsequent paragraphs here may sound whingy, reflecting my frustrations, they are in no way intended as criticism of any doctors, nurses or other NHS staff, hospitals or the NHS generally. They all work extremely hard, invariably under difficult circumstances. In spite of the pressures, I've been looked over very well throughout my life.

As is fairly common for anyone taking immunosuppressants, they can drop the blood count, including neutrophils, type of white cell which play a big part in fighting bacterial infections. The can drop, too during / after a viral infection such as the common cold, as my Haematologist has seen before now. This was the worst bug I'd had for 5+ years.Three years ago, I felt feverish soon after it came on and March started with a chesty cough which banished my other half to the spare bed.

Maybe if having this particularly nasty cold hadn't coincided with my now six-monthly appointment at the liver clinic, the drought would have passed me by without any idea that there was a problem, the neutrophils recovering in their own time, as they have done when they've been low before. I thought of the thing in Quantum Theory about the act of observing something changing its state. Also the philosophical question, would this drought exist if no one was looking? However, blood cells don't behave like that and I've never had much time for philosophy.

I had instructions, then to go to my local A&E on Sunday morning, get a blood test done and get them to report back. I was also told to stop one of my immunosuppressants, mycophenolate, at least temporarily. It didn't help that this cropped up over a weekend - I have never liked being unwell outside office hours - but getting any further on anything like the timescale they wanted felt like banging my head against a brick wall. Seemingly what seemed like simple procedures, taking a matter of minutes, blocked by artificial, bureaucratic barriers.

Thankfully, the A&E was fairly quiet on the Sunday morning, meaning I was seen very quickly and the triage nurse did speak to a Haematology Registrar. They established that I didn't have anything life threatening (sepsis) they couldn't take any blood or tell anyone, because.  Their view was that I'd be better off back home than picking up other people's germs in hospital. Though that was perfectly understandable, I felt guitly about wasting everyone's time, not only the emergency staff but eating into my Cycling Man's Sunday as well. Come the additional (leap day) Monday attached to February, I got a bit further and got bloods done through my GP's surgery, though they said it could take up to a week to come back. Apparently, too, they couldn't fast track it as it involved a different hospital to a regional one. Come late afternoon, the phone rang again. I thought it would be someone from the open exhibition I'd submitted to over the weekend telling me whether or not my work was in the show. Instead it was the liver registrar. I commended her for her vigilance. I've always known that I've been in good hands with the liver team. To phone me twice in as many days showed how urgent they considered my bloods, even if people closer to home didn't seem to share that urgency. My cold, meanwhile was proving very slow to shift, going to my chest. March began with a horrible, messy chesty cough and, again I was mildly feverish. I was then able to get an appointment at the surgery with a doctor who prescribed me antibiotics for my chest. They were also able to track down the blood test: I was relieved to hear my neutrophils had bounced back to normal. The flow of info between various NHS departments also picked up. The liver clinic said restart the mycophenolate, though for now on half the dose I'd been on before. Like them, my GP wanted follow up bloods during the next couple of weeks. That reassures me as I'm now keeping my fingers crossed that my platelet count doesn't drop too low / low enough to bleed. Until now mycophenolate had been the key thing controlling my ITP.

Updated 3rd March 2016.