My Amyloidosis

It’s now been four weeks since I got out and each week I have felt a little better.  The days seem to take for ever but I can honestly say that the sick zombie that left hospital is almost human again!  I am now managing to take short walks with the dog and even do a bit of chipping in the garden which feels great.  When I left hospital I really wasn’t eating much due to the chemo wrecking my stomach and throat linings but it’s amazing how it has repaired.  My weight went down from 78k to 70k which is about a stone so I feel a bit scrawny as my muscles have reduced due to lack of nutrition and exercise.  Overall though I feel great now relative to the last 7 weeks (although get tired easy) so hope things keep improving.  There is still the question of how successful the bone marrow transplant will be in reducing the amyloid deposits in my blood and those already attached to my organs.  I’m seeing the consultant this Thursday so hoping that my blood tests are positive (not sure if it’s mature enough yet to take any serum free light chain measures?) Before I went in for op my SFLC’s were creeping back up to 100 (lambda).  Last blood check showed my neurophils (infection fighting white cells) back up to 3.9 which is great as it was just over 1.0 when I left hospital I’ve dropped all my tablets (anti this and that) but still taking Ramipril to protect my kidneys (protenuria).   The doc says my immune system will still be in a state of supression until about three months post op and will probably take six months to fully mature.  Then I suppose I will have to have all my innoculations again as my new stems cells have no history of bugs and bacteria etc?!

In June it’s back to London for my 6 monthly check up so fingers crossed.  Thanks to everyone for the well wishes and hope to see you all very soon,

choo, Phil

Filed under: Uncategorized on April 19th, 2010