My Amyloidosis

Hi, still feeling good.  Although had a bit of a hitch with a chest infection but anti-boitics seem to have done the trick.  My appetite is slowly coming back and I’m putting my weight back on (Lost about 10 Kg’s).

The big review for me is in June at the National Amyloidosis Centre where I’m hoping that they give me the thumbs up and even news that a little overall reduction in the fibrils already attached to my organs has occurred, would be nice.  I know these can take a while to loosen off but if the supply has been stopped I could experience a reduction (i.e a sligthly less thickened heart wall? - This was 15mm).

I’ve got more energy each week and am walking the dog and playing a little garden golf but still get tired easily.  I’m hoping if results go well this month that I can return to work and a bit more normality.

If you or a friend or relative have this thing just keep believing - I know it’s difficult and that everyone has a different health situation - the trouble with this condition is that you don’t know you have it until something goes wrong and the amyloid has probably been pumping into your system for months maybe years.

Let’s just hope that they make a breakthrough with a drug that disperses the fibrils from the organs and understand plasma suppression drugs more so that dosages can be altered effectively.

speak soon

choo, Phil

Filed under: Latest News on May 25th, 2010