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Kay Strand
@kaystrand

Posts: 131
Joined: Jul 28, 2016

MAC and NTMs with Cavities

Posted by @kaystrand, Oct 8, 2016

I have cavitary MAC in my upper right lobe. I was told a couple of things at Mayo and looking for feedback.

1. My doctor told me this week that I shoukd not do air travel with cavitary MAC. I was told the pressure on an airplane could cause the cavity to leak or break, releasing infection. Anyone heard this? I never had!

2. I am a strong candidate for VATS surgery to remove the cavity after I’m on meds for 6 months. Anyone had upper right cavity MAC and either had or might have surgery?

Thanks for any feedback

Kay S

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REPLY

Hello Kay, I do not have cavitary MAC so really cannot have an opinion on this .. but IF you were told these things by MAYO .. then I would trust it. If you were told them by a local doctor not that familiar with MAC .. then I would get a second opinion by your doctor at Mayo. Just how I would feel about it. I really trust Mayo .. but have less confidence in some of the local doctors with less experience with our disease. Sorry I could not be more helpful. Thinking of you! Katherine

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

@Paula_MAC2007

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

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Paul, what a GREAT answer! Thank you SO much for jumping in .. so helpful for Kay! You are a wonderful resource! Thanks a bunch! Katherine

@Paula_MAC2007

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

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Paula
Thanks for the links. I fit the bill for modular MAC so not sure how I got an upper right lobe cavity but nothing else really shows up. I’m tall, 70, think,Caucasian….with cavitary.

Re air travel. We postponed our trip to EU this month before I was even told by Mayo not to fly. I think this no fly for cavities is new info, my doc said they just met on it. Got to do w air pressure and breaking cavities. Where would I find info on that. Don’t see a thing…I can ask doc at Mayo, but if she says this, I believe her. She and Dr Aksimet work closely.

Anyway, thanks again. Hoping a person who has had a cavity will respond. I wonder if anyone’s had surgery?

Kay S

@Paula_MAC2007

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

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Kay, I am hoping someone reads this post with a similar situation and replies. You are in a tough situation .. BUT are certainly in good hands at Mayo Clinic. Dr. Aksamit speaks all over the country so in addition to the knowledge at Mayo .. he is in touch with others gathering new knowledge. You are in the right place for getting the best medical care you can get. I don’t know if you heard .. but Mayo Clinic, Rochester MN was again ranked #1 in the nation .. see:
U.S. News & World Report ranked Mayo Clinic in Rochester, Minn. the best hospital in the nation in their 2016-2017 rankings.
http://www.mayoclinic.org/about-mayo-clinic/quality/rankings

The only other thing I could suggest is following Paula’s excellent suggestions and googling which I always do a lot of .. problem with googling is you get a lot of info that can be inaccurate and really have to be careful about wading through and deciding what is correct etc. If I was you I would mostly depend on your Mayo doctors .. and put my energy into working on maintaining the best level of health you possibly can .. PLUS your serenity during this difficult time. Serenity has a LOT to do with physical health. Keep coming back .. we will be here for you on this journey. Sending you a hug! Katherine

@Paula_MAC2007

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

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Kay, from your description, it does sound like you fit the description of nodular NTM/MAC. But your question about air travel with cavitary NTM/MAC is very important!! If I were you, I could contact the physician who told you not to fly … I’d ask him/her to explain more fully:
– what are all the specific REASONS that you should not fly
– how will flying affect your body and lungs, and what are the chances of a leakage or break in your lungs. How common is it for people with cavitary disease to have had leakage or a break? (I ask this because it may be totally precautionary, that no one has suffered from a leakage or break – I always like to know the facts and the odds of things happening, versus ‘what if’)
– is this ‘standard advice’ for cavitary NTM/MAC, or information that has only recently been recognized as critical for people with this type of disease. You could ask for the source of their information.
– at what point will you be able to do air travel? When you have NO cavitary NTM/MAC? Or is there a cut-off when a small percentage of the disease will be OK to fly.

RE: surgery … try the blog from the American Lung Association. There are several discussions with people reporting good results after having had VAT surgery at NJH (National Jewish Hospital in Denver).
https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/non-tuberculosis-mycobacterium/

Sure hope someone else on this site can reply with info about no air travel with cavitary NTM/MAC.
Best wishes – Paula

@Paula_MAC2007

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

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Hi Kay, I haven’t received instructions not to fly with cavitary lesions. To see my doctor at NJH I have to fly. I’ve flown 5 times since being diagnosed and hope to do Europe trip this spring. According to sputum and latest bronchoscopy, my MAC has cleared up (actually have 3 more weeks for definitive bronchoscopy culture but negative after 1st 3 weeks along with 6 negative sputum cultures). Lesions still remain and docs want to wait and watch.

@Paula_MAC2007

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

Jump to this post

FYI. I’m going to ask Dr. Huitt at NJH if she’s heard about this. Via the patient portal so cross fingers I get a response.

@Paula_MAC2007

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

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Dr. Huitt’s response: she has had many patients with cavities that fly and that it is not an issue for the most part.

@Paula_MAC2007

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

Jump to this post

Jen
Let’s go with that, it’s a lot more fun than Mayo telling me not to fly! I want to get out of the MN cold weather soon.

I go to Mayo 1/18. I will double check again. My doc is on the MAC team of 5 docs at Mayo MN. At my last appointment in September she said they had just had a meeting and were advising patients w lung cavities not to fly as cabin pressure could cause the cavity to leak or burst. I emailed her afterward and she did say “although it is more lung cysts, there is not 100% guarantee it would be not be a problem”. With that I asked the forum, and no one has been told not to fly that replied, so I’m leaning toward buying plane tiix. But will do an in person check on this the 18th.

Huitt would sure know I have to believe!

Thanks
Kay

Hello,

I have had conflicting advice about flying. One dr says it is not safe to do so unless you have portable oxygen because he feared I could have some kind of embolism in the lung. The other (and latest) dr. said it was ok to fly without oxygen. I tried it and almost had panick attack from air pressure, I think, I felt squeezed in my lungs and like I wasn’t getting enough air. I have only 33% lung function and disease riddled at that. I won’t fly without my POC ever again.

@Paula_MAC2007

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

Jump to this post

Kay, I have one doctor saying my lower cavity is now a cyst (because he says it’s fluid filled) and the other saying it appears solid. Too many cooks….. I don’t care. I’m flying. I could wrap myself in a sterilized bubble in my home and never go out but why bother to live then? I’ll take my chances.

@Paula_MAC2007

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

Jump to this post

@kaystrand @jenblalock Jen and Kay, maybe I shouldn’t say this .. but my and my husband’s philosophy is (we both have health issues)

“If we die .. we die .. but at least we die having fun!” So by golly we travel carrying around the meds .. living by “denial” .. having decided that UNLESS a health issue is STARING US IN THE FACE .. it does NOT exist! Yes, DENIAL may NOT be a river in Egypt .. but it sure has worked well for us through all kinds of fun! Hugs to all! Katherine

@Paula_MAC2007

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

Jump to this post

I would love to go to Rome, but am afraid I won’t have the energy to sight
see once I am there. Any hints?
 

@Paula_MAC2007

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

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@windwalker, Terri, you ARE correct .. denial only goes so far .. it still takes a LEVEL of health/energy to even attempt travel. I HAVE been where you are (NOT exactly!) .. have been up .. been down. I just have listened to my body when I was down until I felt better with the MAC .. then when the MAC got better and I was up again .. the DENIAL kicked in and I was on go. BUT your situation is entirely different .. you have been betrayed by the medical world in my opinion. Denial is a limited tool in your tool box for you as far as I can see .. your positive attitude is what gets you by I think .. PLUS listening to your body. I think you are doing a great job with what you have .. you just keep on doing what you are doing! Hugs! Katherine

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