I have new news

We went to Brisbane overnight last Thursday and stayed with Jo at a conference then drove into my doc appointment on Friday and came home that night. 

Two steps forward one step back.

I'm starting to ramp down the prednisone (the one that makes me make Bluey crazy) it will take four weeks to go to zero. And he took me off the lasics (the one that makes me into a fire hose) unless I am retaining water so two pills off ...but one new pill!  Another type of immunosuprression so i'm on three for a few weeks then back down to two kinds.  This new one is to help my body get off the prednisone and I'm guessing I will get weaned off that later, I hope.

So prednisone boy is going away. I'm not unhappy about that it is nice to have lots of extra energy but it puts my body in fight or flight mode all the time and that's not good. The prednisone also messes with my blood sugar (makes it high) and it increases appetite so I'm doubly screwed. 

I met a lad in the clinic this time that seemed to be a teen but has Downs. His name is Ben and I expect that it really sucks being at day 35 of his BMT. I at least understand some of the reasons for all this stuff that goes on but he just knows he has to do these things and that he feels bad. He liked my loud shirt.... it's the 'skeleton'. The nurses got me to model it for him because he asked about it from a distance. So I showed him and then gave him the shirt. 

This could be my new thing. Buy the way Chip at this web site

has great loud shirts by mambo. And you can see the skeleton shirt here.

Anyway Chip is making me a deal on two new shirts so its like Christmas. I'm off at the end of this coming week and plan lots of blogging. Yes I know you've heard  that before. .....We'll see!

more later 

Chris