Required appointments with BE pulmonologist

I am so appreciative of all who have been able to respond to my question.

I am fortunate in that my PCP finally said, with my weight loss, we need to do more than the ultra sound we did, we need a CScan. 8/22 diagnosed with BE. Also fortunate that I knew about NJH in Denver and did all the suggested tests and found out I had a small hiatal hernia..10/23. Once again fortunate to have found this Mayo Clinic Connect that helped me understand the full meaning of and the various techniques of airway clearance and preventative measures.
Where are you being treated that you are in a study? I was "invited" to enter and see if I qualified for the ARIKAYCE study but declined due to the requirement of having to see the pulmonologist for follow ups frequently throughout the year etc. It would have meant 5 hours of driving to the clinic. That would have been a bit too much for me...even though I am capable of the drive..... just don't want to have to do that....did it for many years of driving distances and don't enjoy it any longer at 82. So now I am trying to find a worthwhile pulmonologist in OKC to work with the specialist in Tyler and hope they will. I have been asked to see the Tyler doctor every three months and that is why I raised the question to others. I would prefer to see her once a year since I am doing O.K. and see a local pulmonologist in between once a year and my PCP once a year.....or all of them more when and if needed. So I want to address it this October when I go to Tyler for my PFT and CScan .... and hope all is stable or better..... and then ask if my preference can be implemented.
LVNL - Thank goodness much has been developed and better understood by the medical field in the last few years regarding BE. However, suprisingly, there are still medical people who have never heard of Bronchiectasis. Glad you are in the study and hope you are having an easy time of it with it all.
Barbara

Can you ask to see the pulmonologist via a video appointment in between and have any bloodwork or sputum samples done locally? I live "away" for half of each year, and that is how I keep up with my appointments.

Hi @blm1007blm1007, I'm enrolled in the Encore study at New York University/Langone in NYC. I live in NYC so while it's WAY MORE doctor appointments than I would like to live with, I'm motivated to hit this thing now at age 69, while I'm active & in relatively good health, and am fortunate enough to have access to excellent health care. I do have permanent lung damage but it's mild and not cavitary. I also am on Humira, an immune modulator, for an auto-immune condition and no one wants me to go off that as it has been very helpful for me, but it puts me at higher risk for the MAC to progress, and to progress more quickly. Thus, the recommendation to get treated. So here we are. More folks on immune modulaters (suppressants) get MAC, of course, which is one reason it is starting to get more common, more known and discovered more often and earlier, since so many people are going on these drugs for autoimmune conditions and there is just more testing all-around. Best wishes to you and to all of us!