(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@windwalker...Terri....are you the person who was told you would need a lung transplant before you were stabilized???l might be recalling the wrong person. Tdrell terri

@windwalker...terri where is the video from the NTM World Conference posted? Was this the May conference held in San Diego?tdrell terri

@tdrell Terri, I was just asking if anyone had seen it yet. I have not, but will look inro it. It was the one held at Georgetown University in D.C.

@tdrell Yes, that was me. I was in pretty bad shape.

It's better, but chest xray easier and cheaper for many, and gets the preliminary results needed...

Thank you for the link to the saline article! I recently started nebulizing with 7% saline. I found out at a NYC NTM support group that practically everyone was told to nebulize except me. Initially I thought I would wait until I was more symptomatic but then I thought Why? Why not do everything possible now so that I don’t get symptoms. I find that I am able to clear better after using the nebulizer and Aerobika. I started off using them attached to each other but am now using the nebulizer and then the Aerobika. I’m playing with it. I think I do better with the separate approach as I focus on my inhalation with the nebulizer and my exhalation with the Aerobika. More zen. Less frenetic.

By the way, I asked my doctor to call in a prescription for the 7% saline 4 mil vials. He is the head of pulmonary at a large health system in New York City and did NOT prescribe it. In fact, he wanted to prescribe a large bottle of 3 % saline that I would have to carefully pour into the nebulizer. He said his computer system did NOT give him the option of the 7% saline in 4 milliliter vials. I did not want that so I called the pharmacy and had them contact him for approval. I was able to buy the little portable (walkman size) nebulizer without a prescription.I listened to the support group and advocated for myself!

@vestafit you go girl! Get what you know you need...do not depend on the medical community to do it for you.

I am new on this website. I was diagnosed with MAC earlier this year. I too had a lung nodule biopsied and sent to CO for confirmation. I have nodules in both lower lungs. (It was accidentally found in a CT I had for another issue.) I had a series of sputum tests and a few months later I had another CT scan that indicated it was no worse and slightly better so no antibiotics at this time. I will have another CT in January to see if there's any change in the nodules. The doctors here had no idea where it comes from because their info indicated could be from air, soil or water but I doubted that so after much research looking at websites like yours, I made the conclusion that it has to be from my GERD. When I had last visit to lung dr, I expressed my thoughts to him and he readily agreed it was probably from aspirations due to GERD. I recalled many times where I coughed a lot at night almost choking at times. Not realizing it was from GERD. I even have trouble with choking when I eat. Have to keep chin straight. Wondering if that's because I have a damaged esophagus?? The big problem is these lung drs are not educated enough on preventing future issues with MAC disease. For instance, I found a website that said: (1) Do not eat 3 hrs before bedtime; (2) Do not drink more than 6 oz at a time; (3) Do not sleep on right side and I'll add another which I think is extremely important - sleep elevated. My lung dr gave me "0" advice on preventing my disease from accelerating. I think it's very sad that lung physicians are not being educated on what and how to treat their patients. The only advise from the two lung drs I saw was I had MAC disease and how to treat it. Nothing on further preventive measures. Very sad.

Good for you, @vestafit. Advocating for yourself has become the unofficial mantra of this MAC group. So glad that you shared this and how the group gave you the support to call the pharmacy.
We look forward to getting to know you. When were you diagnosed with MAC? How are you doing?

Barbara, I have a damaged esophagus, perhaps from a large pill that got stuck in my throat. A couple of times a year I have a procedure to stretch my esophagus and that helps with eating and coughing. It sounds awful but it isn't. You get quite a nice drug that last for just a little while after the procedure and I have never experienced pain. You will want a doctor with a lot of experience. A small balloon is put down your throat and opened slowly and then left for a bit.to expand the esophagus. It's worth looking into because it does make a difference. I had gerd but eliminated the recommended foods, including coffee and I don't eat after six. I sleep on two pillows in comfort. Hope things get better for you.