MAC and NTMs with Cavities

Hello Kay,

I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC -- nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing "cavity to leak or break" may be related to the THIN WALLS in the cavities of an upper lobe.

I also rely on information from a few websites - one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.

Here are a few more sites with info about your type of NTM, that state "In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Kay, as an aside, after being diagnosed, I limited my air travel to 2-3 hour flights for quite a few years. We postponed a trip to Europe for 3-4 years due to my breathing. I wasn't told to do this - but we knew it would be a difficult journey with my lungs; my doctor concurred. I've since been making the trips to Europe with no issue. But I try not to have flights non-stop longer than 8 hours.

Best wishes - and let us now what you find out. It's important information for others who have cavitary NTM or MAC.

Paula

Hello Kay,

I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC -- nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing "cavity to leak or break" may be related to the THIN WALLS in the cavities of an upper lobe.

I also rely on information from a few websites - one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.

Here are a few more sites with info about your type of NTM, that state "In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Kay, as an aside, after being diagnosed, I limited my air travel to 2-3 hour flights for quite a few years. We postponed a trip to Europe for 3-4 years due to my breathing. I wasn't told to do this - but we knew it would be a difficult journey with my lungs; my doctor concurred. I've since been making the trips to Europe with no issue. But I try not to have flights non-stop longer than 8 hours.

Best wishes - and let us now what you find out. It's important information for others who have cavitary NTM or MAC.

Paula

Hello Kay,

I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC -- nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing "cavity to leak or break" may be related to the THIN WALLS in the cavities of an upper lobe.

I also rely on information from a few websites - one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.

Here are a few more sites with info about your type of NTM, that state "In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Kay, as an aside, after being diagnosed, I limited my air travel to 2-3 hour flights for quite a few years. We postponed a trip to Europe for 3-4 years due to my breathing. I wasn't told to do this - but we knew it would be a difficult journey with my lungs; my doctor concurred. I've since been making the trips to Europe with no issue. But I try not to have flights non-stop longer than 8 hours.

Best wishes - and let us now what you find out. It's important information for others who have cavitary NTM or MAC.

Paula

Hello Kay,

I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC -- nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing "cavity to leak or break" may be related to the THIN WALLS in the cavities of an upper lobe.

I also rely on information from a few websites - one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.

Here are a few more sites with info about your type of NTM, that state "In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Kay, as an aside, after being diagnosed, I limited my air travel to 2-3 hour flights for quite a few years. We postponed a trip to Europe for 3-4 years due to my breathing. I wasn't told to do this - but we knew it would be a difficult journey with my lungs; my doctor concurred. I've since been making the trips to Europe with no issue. But I try not to have flights non-stop longer than 8 hours.

Best wishes - and let us now what you find out. It's important information for others who have cavitary NTM or MAC.

Paula

Hello Kay,

I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC -- nodular which is prevalent in thin, middle-aged white women, and cavitary which is more prevalent in men with underlying lung disease. And then there are those with a combination of the two. Your question of causing "cavity to leak or break" may be related to the THIN WALLS in the cavities of an upper lobe.

I also rely on information from a few websites - one is the NTM Research & Info group, a non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research.. . . https://www.ntminfo.org/
They have an online support group, but also they provide phone nos. & email addresses so you can contact them directly. Perhaps they can answer your question or refer you to a knowledgeable physician who can. I think a further explanation from another physician is a good idea.

Here are a few more sites with info about your type of NTM, that state "In upper lobe cavitary form, thin-walled cavities with overall volume loss and fibrosis are the dominant feature, often also with features of endobronchial spread with tree-in-bud opacities seen elsewhere.
* https://radiopaedia.org/articles/pulmonary-mycobacterium-avium-complex-infection
* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
* http://maclungdisease.org/frequently-asked-questions

Kay, as an aside, after being diagnosed, I limited my air travel to 2-3 hour flights for quite a few years. We postponed a trip to Europe for 3-4 years due to my breathing. I wasn't told to do this - but we knew it would be a difficult journey with my lungs; my doctor concurred. I've since been making the trips to Europe with no issue. But I try not to have flights non-stop longer than 8 hours.

Best wishes - and let us now what you find out. It's important information for others who have cavitary NTM or MAC.

Paula