Tuesday, July 22, 2008

Day +721 Knuckles Hurt

We took a trip to southern California this past weekend. We camped and attended a reunion for Michael's church. David was complaining on/off about his abdomen hurting. He looked tired but had a good time. We went indoor rock climbing. The children had a super time! He was active but did not have a good appetite.

He's been complaining about his knuckles hurting, his elbow, and the bottom of his feet. The pain comes and goes. It's not hindering any of his activities.

Current meds:

Prograf - 7ml/twice/day (GVHD)
Steroids - 4ml/once/day (GVHD) (I'm not sure this is working, he might need to go back on 2ml/twice/day)
Septra - 4 ml/twice/day (infections)
Emu Oil and Topical steroids - once day/sometimes twice (GVHD)
Isradapine - 2ml/twice/day (blood pressure)

I would like to add the following:

Culturelle - probiotic
Omega Oils - Nordic Naturals (for inflammation and auto immune disorders)
Sedona Colostrum

Neurology Called:

The neurology dept called to set up a post BMT neurological assessment. This will happen mid August. Since David had chemotherapy (oh, I dislike that word!) there are risks associated with things like short-term memory. It's expensive $350/hr. The assessment will take 4 hours. The insurance should cover it.


Anonymous said...


Could his joints be hurting from natural growing pains. I know that you must be worried it is GVHD, but I am hoping it is something normal. Question -- did you request a neuro evaluation or did the doctors? Cincinnati has never requested that Jacob have one.


Susan said...

Hi Amiee,

I was reading the blog and was thinking I was once told about James after his transplant he always complains of pains in his legs and arms. I was told by a nurse and doctor that this is be a side effect from the transplant it self, so you many want to look into this. As if it was GVHD they would normally not that alway happens they would get runny smelly poo's.
Anyway that enough of that Aimee I was Zac blog up and running now which is if you type zac rugless or zac william rugless it should come up for you. Hope all is well and fingers cross the pains are nothing.
Take care