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.
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.
