Recently diagnosed

Hi Heather, I hope you are nebulizing with 7% saline and can access Dr. McShane's airway clearance video. There's one that Sue posted a while back which really helped me. Twenty years ago, I had an atypical pneumonia and was on antibiotics for 3.5 years. I lived in Colorado and went monthly to NJH. I was in bed for almost a year and on the couch for 2 more. I did not look sick at all except for the first 6 months, when my hair was falling out. I had hundreds of nodules and as a result, I got mild BE. I now have moderate BE and M. Abscessus. In 2011, I moved to AZ and did not have the best doctors here. I believe the lack of a treatment plan-in the case I got bronchitis or other infections, took me from mild BE to moderate BE, and now Mycobacterium Abscessus. This site is extremely valuable, I have learned the importance of nebulizing and daily airway clearances. Also, exercise, diet, and if you're a mouth breather-learn to be a nose breather. Even if you are fatigued, exercise as much as you can. Those tiny cilia in your lungs are flattened and exercise helps with their regeneration-to stand up and push the sputum out. The bugs love sugar and carbs, so I've pretty much eliminated sugar from diet-though decreasing carbs is a struggle. Prior to diagnosis, I had night sweats, extreme fatigue, chronic cough, no appetite, muscle aches and I am now fairly asymptomatic (other than a cough when I nebulize and do airway clearance exercises). I also have a better pulmonary doctor, who sees me 1/3 months. Yesterday, he told me to add Zinc and Vit C with my D3. My PFT has not changed since last year. ID doctor wants to hold off on Big 3 until I go to NJH in May. All my nodules have decreased in size, but now I have 1 small cavity-so I'm guessing, I will be on BIG 3 (or 4) soon. I hope you feel better, I don't think there's anything worse than that insidious fatigue.

Hi,
My diagnosis of BE is not even a year old. I crave ice chips, and substitute chewing on them for sugar. I do see a local pulmonologist here in Scottsdale. I am wondering if you are still in Arizona and are treated at Mayo. My pulmonologist said I should use an air clearance device but was not specific about how much or how often. I don't have many symptoms yet, but I would like to prevent as much as possible. I am almost 84 years old, walking over 3 miles daily. I am grateful for any suggestions from people who have been dealing with BE longer.
Thank you. Roz

Hi Roz,
I'm in Scottsdale as well. Unfortunately, Mayo is not in network with my insurance. You sound to be in great shape. Walking 3 miles per day is phenomenal. I wish I could say the same. I am quite busy during the day, so time is the biggest factor for me. I used to use a Flutter valve device and when that wore out, I switched to the type with the balls. I liked the flutter valve much better. I think it's a personal preference. I have been very neglectful and just doing the airway clearing exercises. I would like to get back to spirometry exercises and find one that can be cleaned for inverse spirometry (working on inhale). The ones I've seen, can't be taken apart and cleaned. I live a little east of 101 and Cactus. It's very important, to quickly remedy lung infections and inflammation. When I moved here from Colorado, the first pulmonologist I had told me that bronchitis is viral and she would not give me antibiotics. My doctor at NJH told me whenever I got sick, to get on antibiotics. So I believe my bronchiectasis got worse due to chronic lung infections that were not dealt with. My new Pulmonologist gets me on antibiotics quickly-as soon as I get an upper respiratory infection.
Kathy

Thank you, Kathy. I had never heard of BE until I was diagnosed. I have a flutter device and use it sometimes. I am going to take it with me to the pulmonologist when I go next month. I think I got it from breathing in smoke from Maple and Ash, a restaurant near my building. I can't prove it, however. What is NJH? Do you get infections often? I live at Camelback and Scottsdale Rd. I know where you live. I really appreciate your feedback. I stumbled on the website and am so glad I did. Hope you're having a good day. Roz

Hi Heather, I hope you are nebulizing with 7% saline and can access Dr. McShane's airway clearance video. There's one that Sue posted a while back which really helped me. Twenty years ago, I had an atypical pneumonia and was on antibiotics for 3.5 years. I lived in Colorado and went monthly to NJH. I was in bed for almost a year and on the couch for 2 more. I did not look sick at all except for the first 6 months, when my hair was falling out. I had hundreds of nodules and as a result, I got mild BE. I now have moderate BE and M. Abscessus. In 2011, I moved to AZ and did not have the best doctors here. I believe the lack of a treatment plan-in the case I got bronchitis or other infections, took me from mild BE to moderate BE, and now Mycobacterium Abscessus. This site is extremely valuable, I have learned the importance of nebulizing and daily airway clearances. Also, exercise, diet, and if you're a mouth breather-learn to be a nose breather. Even if you are fatigued, exercise as much as you can. Those tiny cilia in your lungs are flattened and exercise helps with their regeneration-to stand up and push the sputum out. The bugs love sugar and carbs, so I've pretty much eliminated sugar from diet-though decreasing carbs is a struggle. Prior to diagnosis, I had night sweats, extreme fatigue, chronic cough, no appetite, muscle aches and I am now fairly asymptomatic (other than a cough when I nebulize and do airway clearance exercises). I also have a better pulmonary doctor, who sees me 1/3 months. Yesterday, he told me to add Zinc and Vit C with my D3. My PFT has not changed since last year. ID doctor wants to hold off on Big 3 until I go to NJH in May. All my nodules have decreased in size, but now I have 1 small cavity-so I'm guessing, I will be on BIG 3 (or 4) soon. I hope you feel better, I don't think there's anything worse than that insidious fatigue.

Hi Kathy -
I found out that the CVS Micropore Tape this year bothered me with taping my mouth shut at night. Returned it to CVS and bought the 3M Nexcare which Scoop mentioned. Yes to 3 M Nexcare. How are you doing with the night mouth breathing. The tape helps me keep the night build up of mucus "juicy" rather than it getting thick and sticky as it did when I wasn't taping my mouth closed. I really think that the years of sleeping with my mouth open, before I learned I was, affected the lungs. I can't see how it would not have dried out more than just my mouth by sleeping with it opened night after night year after year and such that I woke up with dry mouth. What do you think??
Glad to hear your pulmonologist told you to take Zinc and C. I have been taking it along with Garlic for infections. Of course the D3 also.
I have been wondering if before Covid, for those having been diagnosed with BE, were the doctors suggesting BE patients to wear masks (N95's) when out it public etc. ?? Do you know.?? Especially since you are a long time patient at NJH. I was diagnosed with BE a few months after we all learned of the Covid outbreak. I didn't have a bout of Covid until Feb of 2024.
Carb counting for most of us is so important. I can't go without pasta at least once a week but keep the portion so much lower than what I would indulge in during my pre 50 years of age. Ice cream and pasta are my one cheat and limit both. Pasta once a week ice cream once a month. Sacrifices, sacrifices.
Noted that you go to NJH in May. Had you continued with NJH since moving to AZ and therefore your local pulmonologist and ID doctor work hand in hand with NJH?????
With Dr. McShane having gone to NIH I am again deciding who to have as my pulmonologist, either a new Tyler pulmonologist or NJH or local pulmonologist with Tyler or NJH. How has it worked for you? By the end of April I should have a good idea of what I will do.
When and if you have time to answer, thanks.
Barbara