Experience of Roger Woodward

Experience of Roger Woodward, Sevenoaks, Kent – October 2020 – February 2023

It all started when I got an enormous bruise on my chest (the size of my whole hand) after catching it on the top corner of the car door in a tight car park. I didn’t think anything of it at the time but noticed that I was getting bruises easily and after a week or two I started getting blood blisters in my mouth and black spots on my tongue. My GP sent me for a blood test, and I was immediately called in the hospital where I stayed for a week. After various steroids (Prednisolone) and an immunoglobulin infusion I was released when my platelets were in the teens. Two weeks later I got more black spots and red spots on my shins and was back in hospital again for eight days. The same procedure, except this time, I had a bone marrow biopsy taken which showed that I was producing my own platelets. I was started on Romiplostim injections the dose of which was increased, and this worked for a few weeks and then suddenly crashed at the same time as I had a sinus infection. I was back in hospital for two days and put onto Eltrombopag. that never worked even after the dose was increased.  I had several more emergency hospital admissions with blood platelets below 5, several immunoglobulin infusions, and short courses of steroids. and eventually, after nine months, was given four Rituximab infusions. After a few weeks, the platelet count started rising from single figures (two) through the teens to about 50 after a month, then to around 300 after another month. Two weeks later, they were 298. I have had no more spontaneous, bleeding in my mouth or bruises elsewhere since then.

I found the whole period very stressful. All the blood testing was done at a local hospital which didn’t have booking facilities, so I was going there four times a week for either blood tests or Covid tests or treatment at the Haematology centre, sometimes waiting for treatment up to 4 or 5 hours each week. From day today, I lived in fear of blood, blisters, bruises, et cetera leading to yet another hospital admission. I never felt particularly ill but out it really affected mentally. I was unable to travel or do anything really. Since I live on my own, this was particularly difficult to cope with. The ongoing Covid situation didn’t help and on one of my emergency admissions. I had Covid myself being in hospital was a horrid experience on that occasion.

Following the rituximab infusion, I developed swelling in my lower legs, with a tenderness and rash. My GP seemed baffled by this, and I never really got an answer or resolution. This together with pain from arthritic knees, made walking extremely difficult.  This seems much better after six weeks or so. The steroid treatment also made me put on a lot of weight and not being able to exercise it’s very difficult to lose it.

My initial treatment was by admission at Tunbridge Wells Hospital, the second and subsequent times were all at Maidstone hospital, each time requiring a lengthy assessment period in A&E of course. My Haematology specialist at Maidstone eventually after a second opinion from specialist at Bart’s in London, but the rituximab treatment was authorised and carried out at Maidstone. I only got a call from the doctor at Barts after that had been completed. I’m expecting another call in April.

I am delighted at being able to stop to get back to a normal life. I’ve even booked a short overseas trip in two months’ time and possibly a longer cruise in six months’ time but I’m a bit worried about getting insurance*.

*Editors note regarding Insurance, many ITP Patients have found companies such as Staysure offer travel insurance coverage at reasonable rates.