Hi Ann, yes, mentioning the medication is okay as I understand it. Right now I'm on Asmanex Twisthaler 220 mcg. It is metered doses of a powder that you inhale into your lungs. I tried Combivent, Albuterol, Spriva and they didn't help me. With the Spriva, I may not have stayed with it long enough, I'm not sure about that. As with all medications, we are all different and what works for one of us may not work or be advised for someone else. The Asmanex is (as I understand it) a combination med to help open up the airways and a steroid to help with inflammation. I wish it helped the breathing more, but at least I notice a difference. The biggest thing is I don't get so exhausted and have more energy. I'm very grateful.

If you have a son moving to Denver and a place to stay, going to the specialty research facility would not be that costly for you. It's staying in a motel that really pushes the cost up. I am very concerned about all the blood you cough up as you have been doing that for a long time, plus the greenish gunk. It takes a long time to get an appointment. And in the event you might require surgery, the specialist you get referred to by JNHC are surgeons who do such surgery routinely. In the NTM (non-tuberculosis mycrobacteria) support group I am in, most of the people in the group go to Denver. Many have had surgery there and they all swear by it as the best!!!! Sharon would probably suggest you call the nurse line and talk to them. (Sharon, right??)

I don't know but it seems as if your doctors there, even the one at Duke, are baffled and don't know what to do for you. When it comes to the lungs, that is one of those parts of our body that we want the best care available and the Denver specialty research center has the reputation as the best for our kind of problems.

Good luck and thanks for keeping us posted. Peggy