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Friday 25 January 2019

Backwards and Forwards part 2

The last post focused on my targets for last year / this year. This post is more about what happened last year and what I would like to think might happen this year.
The year started well. Before this time last year I thought it would be the year I started to do a lot more travelling on my own, and maybe I could get some money from my writing whether it was this blog or fiction. But that stuff didn't happen. I had been feeling a little bit tired, but nothing too unusual when at the end of January I had a routine blood test at my GP. That evening I had a call from the GP saying I needed to get to A&E because the test had shown up a problem. As I mentioned in my post back in July, I have a condition called ITP which affects the number of platelets in your blood, most people have a platelet count of over 100, a safe level is 30, at this point mine was 11, in-case you don't know the platelets help clot your blood.


I was put on a strong dose of steroids for a few weeks and then came off them completely a few days before my check-up with a haematologist. That was bad for my body as when I came off them I was very ill, and the day of my check-up, I got a severe nose-bleed that wouldn't stop. We went to the appointment, but I ended up in A&E, and actually spent a few days in the hospital, while they first struggled to stop the nose-bleed and then gave me blood to improve my platelet count. It was now 9.


Since then I haven't been as bad, but there have been times when I have felt very ill indeed, lethargic and with very bad headaches (probably caused by the steroids.) They put me on a high dose of a different steroid and they have been reducing the dose since. Unfortunately when it gets down to the very low doses my platelets still slip to a dangerous level. The problem is that a scan showed that my bones were being affected by the steroids. Yesterday I had a check-
up with my haematologist, and they feel I need a different treatment. The next step will be to have some doses of Rituximab (a drug which is used for patients with ITP among other things), which will have to be given at the hospital either by injection or intravenously.


On the whole, it felt like a dark year, but there were good points too, like the family holiday in the summer and I do feel like I'm stronger emotionally through having been through this. Onto this year, even though nothing is certain yet (and I'm learning there are fewer certainties in life ha-ha), but my ITP should be manageable before the end of the year, I'd like to be able to do some of the things I was planning for last year. I would like to make another train trip on my own this year, somewhere quite local, and a hotel stay on my own. All small steps to becoming more independent, and being able to travel more, which is my big long term goal, there are so many places in the UK and beyond I'd like to visit.


Looe, Cornwall, town we visited this summer

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