Watch and Wait Protocol?

Yes, I am doing the watch and wait. I was diagnosed 3 years ago at age 64. Found on a CT that was performed for another matter, no symptoms. MAC found through bronchoscopy because I was not producing sputum. The pulmonologist that diagnosed me wanted me to start right away. I refused, went to NJH a year later. They agreed with the watching and waiting. I know that if things get bad enough I may have to do the treatment. Meanwhile, I try to do things to stay healthy and nebulize with 7% saline to get out mucus and make it less hospitable for the nasty bugs.

I was dx 5 years ago with BE and MAC and felt ok. Yes my pulmonologist also had a wait and see approach. Unfortunately, my chest ct worsened and I was put on etambutol annd azithromycin but only tolerated 7 weeks.
Because I have gastritis annd IBS, i dont think I could tolerate Arikayce. Seeing my pulmonologist
on the 19th.

I had a mac infection in 2020. My pulmonologist, infectious disease doc and I decided on a watch and wait. I nebulize twice a day, use a vibrating vest once daily, use an inhaler as needed, and do postural drainage once a day. I"m 76, walk two miles daily, keep up with friends and do my own house chores. I try to eat healthy, wear a mask in indoor settings, and give myself the grace to rest if I feel the need. I have been satisfied with the choice to watch and wait.

Thank you so much for sharing your experience! Our situations sound very similar. It's encouraging to know that others are doing this, too. I wish you all the best!

I too am on "watch and wait," but by my own choice. I am nearing 80 years of age and in pretty good health other than my lungs. I've tried the Big 3 when diagnosed in March of 2023 and was unable to tolerate them and questioned my local pulmonologist's treatment (and I do like him very much) and, with his knowledge, I decided to go to NJH for a second opinion. After much testing from August 2023 through January (of this year), my NJH Infectious Disease doctor put me on the Big 2, Ethambutol and Azithromycin.

I started the first week on the Azith and added the Etham the second week. Three days into the Azith, I had rare side effects: phantosmia and dysgeusia. I was smelling sewage and tasting metal.

Long story short, I am unable to take the main macrolide, Azith, and thus I am on "watch and wait" and will see what future CT scans reveal in regard to the progression of both the BE and MAC. I am feeling fine and doing quite well with the Aerobika, Mediterranean diet, and exercise. I am unable to use saline or Albuterol due to both causing my major hemoptysis over the past year. So, for now, I am relying on the airway clearance and, for the most part, I am stable, remaining positive, and hoping for no major medical problems into the future.

Thank you for sharing your experiences! I'm concerned about tolerating the meds once I have to start them. My ID doctor told me not to read the side effects. I can't not try to educate myself! I wish you all the best!

Thank you for sharing your journey experiences with this disease. Bless your heart! I had never even heard of MAC and bronchiectasis before my diagnosis. I feel encouraged about proceeding with the watch and wait. I wish you all rhe best!

Thank you for sharing your experiences! It's so helpful to hear how others are doing this, too. I wish you all the best!

YES - I too am a "watch-and-wait" patient. It's a mental thing - so I've decided to move forward with my life and hope I don't have problems at 30,000 feet in an airplane for the 6-hour trip to my destination. YIKES!

Thanks for sharing! I know exactly how you feel. I recently flew to Greece and had the same concerns, but I didn't have any problems. Safe travels and enjoy your trip!