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Hi Hope - boy that's a lot of cortisone - enough to make anyone a little crazy - they just put me on 80 mg - which is messing me up in a number of ways - can't sleep, high blood sugar - I've been on 10 mg for a while but the boost really makes a difference in how I feel.
Emory is a great place, especially if you have family. Whatever your insurance provides, there is always an exception for special treatments or doctors that may not be otherwise covered - I think making an argument for Emory (or any other specialized treatment center of excellence) under your circumstances should be easy if your company is operating in good faith - you require complicated procedure with multiple other diseases requiring their own special treatments and close cooperation with a transplant team. There are not many places you can get that and none near your home, so they'll have to cover it someplace - Having a family member close by can be enormously helpful.
Good luck - you're going to do great. Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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