My Amyloidosis

I’m out! Unbelievable.

On Sunday my blood counts were good and especially my neurophils (cells that fight infection) were 1.3 after two days at 0.90 and 0.91.  This was just enough along with other markers to say you can go today.  Strangely wasn’t that estatic purely because I still felt quite low and a little nausea.  Today is Friday and I feel a little better but it’s taking an age to actually feel stable.  I had my first clinic appointment back at Birmingham yesterday which I was able to walk to from the car so gaining some strength back slowly.

The good news is that I continue to improve and blood counts are nearly back to normal and my neurophils continue to climb and are now 2.1.  The Doc says I need to be patient but so far have done fantastically well although it doesn’t feel like it as I still feel very groggy.

My appetite is non-existent but I’m eating little bits regularly as I know this well help my recovery,  My mouth has no taste but again the doc said this is normal and will continue to recover.  I have to continue to watch my diet and for a few weeks and not eat out or anything that may contain bacteria (similar to pregnancy diet I suppose).  Rice Krispies and porridge (little quick packets) have been my saviour.

I’m able to watch lots of sky sports (golf and footy) now I’m home which is great.  It is also brilliant to see the kids again.  I get tired really easily and kip maybe twice a day but my night time sleeping is not good so will try to reduce this to one short nap I think to help.  Still taking lots of tabs to help keep the stomach settled and nausea at bay.

I’m hoping by next week I can feel more settled - it’s sometimes like feeling sea sick and not being able to get off the boat (I vividly remember a Dublin crossing on the Irish sea, when we had an end of season football party, giving me a similar feeling on the way back).

Anyway, really please with my results so far, although got to wait a couple of months before they check for SFLC’s again which will be the real mark of success.

Thanks everyone for your support it has made the whole thing bearable especially my wife Penny who has been there for my every need - she is so ace.

Keep it real,

spk soon Phil

Filed under: Latest News, Uncategorized on March 26th, 2010