My ITP Journey by Paul Stacey

My ITP Journey by Paul Stacey

Like most people, I was accustomed to occasional headaches, especially stress-related episodes. A couple of Ibuprofen usually dealt with them effectively. However, the intensity and location of the headache I experienced one Friday evening in June 2016 was on a completely different level. At the time I thought a couple of tablets would again do the trick. There was no improvement in the morning, and we phoned NHS111 for advice. I was told that it was probably a migraine and was prescribed some medication. As a seemingly fit and healthy Secondary School Head of PE, I rarely took time off and expected to be fine for work on Monday morning.

Unfortunately, the pain had not abated and would not do so for the next 3 weeks. Two visits to my GP surgery followed and a migraine remained the probable explanation. On the first of these visits, I was prescribed Aspirin, which in retrospect could have been very dangerous. I dutifully followed the advice, but it became apparent that the pain was not subsiding, and I was taken to my local hospital. Examinations ensued and it was decided that I probably had meningitis. My employer was informed, and I was given a course of antibiotics. After scans and a lumbar puncture, it became clear that I had in fact suffered a subarachnoid haemorrhage – a brain bleed and a form of stroke. I was rushed by ambulance up to Kings College hospital and spent the next few weeks under their marvellous care. I cannot speak highly enough of the staff there. Unfortunately, my stay was lengthened as I had contracted Clostridium difficile along the way, probably as a result of the antibiotic treatment.

I eventually left hospital on my 55th birthday and the next stage was to discover what had caused the haemorrhage. I was sent to the haematology department of my local hospital and after more tests (including a bone marrow biopsy) I was finally informed that I had ITP. The platelet level had become very low and had not been able to repair the bleed as would normally have been the case. It was a relief to finally discover what had caused the problem although I had no idea what it was and how it would affect me. I took the steroid Prednisolone for a while, which had the desired effect of raising the platelet count. However, the count fell as soon as I was taken off them and I was not keen on the side effects. The haematologist then prescribed Eltrombopag and I have been taking it ever since. My platelet count is checked following my monthly blood test and my average count is currently 92. Fatigue is the most significant side effect of the condition and this was quite distressing in the early days.

Given the nature of my practical job and the possible ramifications if it were to happen again, I had to leave my job and take early retirement. With my son just starting university, I had intended to work for at least 5 more years. The most challenging aspect of my retirement has been becoming accustomed to the reduction in social interaction. Going from the full-on nature of my teaching job to unexpected retirement was difficult and at times remains so. I find that having a structure to the day helps and I am fortunate to be able to exercise at the gym and play golf (pre-Covid lockdown). As ITP patients, we have a rare blood condition which many professionals are still not familiar with. As my case demonstrates, it can be an arduous journey just to find out that you have the condition. I do not blame any of the professionals who failed to correctly diagnose my original haemorrhage as that was not the most likely scenario. I have spoken with my GP surgery and discussed my case for their own information/development. I feel very fortunate that I am now generally well and am able to lead a mostly normal life despite the traumatic events over four years ago.