Thursday, November 20, 2008


Gess came home today.  He is currently pacing around the house because he is on demoral.  I hate it when he is like this.  It drives me crazy!  Anyway, the echo came back clean and so did the blood work.  The MRI machine was broken, so he has to go back tomorrow.  


jordysmom said...

How scary for both of you! Thinking of you.


Will said...

Demorol always gave me a headache, and its pretty weak, in some people not much better than aspirin. Dilaudid (or almost anything else) is better -- kind of like morphine, but about ten times stronger so the side effects aren't as bad. I went through about a dozen different kinds to relieve chest pain, pain from coughing, and looking for the side effect (relief from feelings of impending doom). All of them boosted my energy and activity levels. I was on them for about five years before my transplant (starting with Demerol, which I realized within a week or two was giving me tremendous headaches and needed to get off of). They make you feel less like you are dying by making your feelings of suffocation less overwhelming. Otherwise, I think, it would have been worse for me psychologically to not only have been dying (on whatever time scale I was on) but to have always felt more strongly than was true that I would actually die soon. I was able to continue exercising (at some cost to my brain). On the other hand, even though I think they were useful, I can't quite recommend them, as they become an issue in their own right (note that I'm on them now after not ever stopping after the cancers and have been taking them now for more than a quarter of my entire life, or half my adult life -- from five years or so before transplant, to a year after, then two years off, then again with the cancer/PTLD -- so ages 28 -35, then 37-40+).

Anyway, sorry to hear about the continuous-sounding setbacks. Bleeding was always a big and scary problem for me also, particularly scary because I was always an energetic and enthusiastic cougher. I hope you both get a break sometime. I can't remember if Jess is on a CPAP machine to sleep, but I always thought it helped, if one problem is being woken up by CO2 or O2 levels being way off.