Reflections and Refractions

I have just discovered that there are several facebook pages dedicated to people with Aplastic Anaemia – not many but then that’s probably not surprising given that its a fairly rare disease which no-one knows a great deal about. I was feeling a bit down as we’ve decided to go ahead with a second atg treatment using a rabbit this time instead of a horse. (Yes that’s right. I get infused with antibodies taken from rabbits and horses. People always said I was a bit of an animal.) I’m going in on 27th. It will take about 6 or 7 days in hospital having the actual atg and then another 3 to 4 months of other intense immuno-suppressive medication. Its not a pleasant experience, but hopefully it will have the right effect. Last time I got 18 months of drug-free normality. We’re hoping this time it might even be longer.

I’ve had a number of blood transfusions in the five years since this was diagnosed and quite a few bone marrow aspirates, also not the most pleasant of experiences. Sometimes you really get sick of being sick, but mostly its just “there’s nothing much I can do about it, so let’s just get on with it.”

Its easy to look at one’s own situation and get despondent and blue, but looking at some of these other pages and reading what some of these people are going through, I realise my own situation is not nearly so bad. I’m pretty lucky. Its sad to read of people just struggling to just put one foot in front of the other, or where the slightest knock can cause severe bruising, or where the slightest chest infection becomes a life-threatening experience. 

Some of these people could be cured by a bone marrow transplant but there’s no suitable donor. Many need regular, as in daily or weekly, transfusions of red cells or platelets. But one lady in England had to wait five hours for blood as there simply wasn’t any suitable blood available. While she waited, she was bleeding from all over the place because her platelets were so low.  Even in my own case, without blood transfusions and without the immuno-suppressive treatments which have only recently (in the last 10-20 years) become available, I wouldn’t be here writing this blog entry. 

If you are healthy please give blood. Consider being a bone marrow donor. Either way, you will literally be saving someone’s life…maybe even mine. But above all, be happy.  Sometimes we don’t appreciate how lucky we are.