Hi friends -
I’m weighing in as a patient at Mt Sinai in NYC regarding the question of partnership with National Jewish Health. I see my doctor at Mt. Sinai at the National Jewish Health Respiratory Institute. While I love my doctor and feel I am receiving sound guidance and treatment (I’m not taking antibiotics but am doing airway clearance with 7% saline twice a day), I’m terribly dissatisfied with the sputum testing reports that I receive. I do not like the fact that I only get a “yes/no” to whether NTM-MAC is present, along with a quick smear and final smear result with a maximum time of 6 weeks’ growth time. I’ve asked my doctor repeatedly about testing at another lab that can determine what strain of MAC one has, along with the quantity of bacteria and a growth period of 8 weeks, and he said they don’t have that option. That never made sense to me since it’s the NJH Respiratory Institute. After 18 months of up-and-down test results (as many as two negative in a row, but then again I’m back to positive), I decided to become a patient at National Jewish Health in Denver because their lab can speciate and quantify the bacteria present. I am still in the intake process, but my understanding is that I will need to go there once for between 3-10 days, and then from there I will be able to have my sputum tested by their labs and my case will also be followed by them.

On another note, I am seeing a geneticist next week after waiting nearly five months for an appointment since test results showed that I am a carrier for cystic fibrosis and primary ciliary dyskinesia, a genetic constellation my pulmonologist believes may be the source of my bronchiectasis. I read Sue’s post in another thread this morning and she stated the being a carrier of cystic fibrosis is often the source/cause of one’s bronchiectasis, but I don’t think a lot of people know that. It has generally been thought that being a carrier of the CF gene was not a cause for concern, but they are finding now that it can in fact cause some symptoms of the disease to take hold, such as bronchiectasis.

I know there is nothing I can do about my bronchiectasis, except airway clearance and hope it doesn’t get worse, but I am really hoping to be able to clear myself of the infection without using drugs if I can help it. I’ve been told that’s possible, but I’ve never been able to get an answer as to how long that could take. If anyone knows of cases where folks have been able to clear the infection without taking the meds, I’d love to know how long it took.

Thank you to all for your company and counsel on this shared journey that none of us signed up for!

Hi Barbara - no Doctor is with Weill Cornell.