Re: medicine being used by CF patients

[Guest guest]

Joy you are right on with this information. They are going to do a study at the University Clinic in Madison Wisconsin. They asked me if I would be interested in being involved. It's a new pill they have come out with in the last year for CF patients. They want to see if it would help bronchiectasis patents. It won't cost me anything but the pill actually costs eight thousand a month. I can't hardly believe anyone could afford it or no insurance would help cover the cost. I will let you know more when they get things set up,. I told them I wanted time to read over the side effects and more about the pill before signing up for anything.

Subject: Re: abx and resistanceTo: bronchiectasis Date: Friday, May 20, 2011, 8:40 AM

hi Norma,gee it gets complicated doesn't it? So hard. Am sure most of us can relate to what that kind of experience means, tedious hours in ED, or tests etc before getting things right ... and then some more...Something I'm noting with more and more consistency - just how many of us have Psa (Pseudomonas) although not CF. It seems largely considered by medical fraternity to be a CF infx mostly. I know here there are small steps toward overlapping bronch and non-CF bronch in terms of management. About time ... ? I have 3 forms of it, and told by Dr that CF pts can have as many as 6 variations of Psa.How many of us are there with Psa?Joy h

[Guest guest]

hi Joy

did you find out about the new pill yet? Was it Mannitol?

cheers,

joy h

[Guest guest]

Hi Joy I have not got my paper work yet. I am waiting patiently. I just hope the University doesn't run into any snags on getting it set up. I go back in June for a cat scan and a good check up. If I haven't heard by then I will be asking the Doctor whats going on. I have been doing pretty good so far, but a lot of pain with the RA I can't believe it came on me so fast. It is the most painful thing I have dealt with. Take care and thanks for checking in with me. Enjoy your new place and hope now you can find some time to relax. We sure appreciate all you put into our support group. You are so good at getting answers on things and taking the time to reply.

Joy L

Subject: Re: medicine being used by CF patientsTo: bronchiectasis Date: Saturday, May 28, 2011, 7:55 PM

hi Joydid you find out about the new pill yet? Was it Mannitol?cheers,joy h

[Guest guest]

thanks Joy - one Joy to another joy!