1. < MAC & Bronchiectasis

MAC and NTMs with Cavities

Posted by Kay Strand @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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 5, 2017

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.

REPLY
Jen_b | @jenblalock | Jan 6, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 6, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 20, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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

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

REPLY
Katherine, Alumni Mentor | @katemn | Feb 20, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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

@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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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

<br><br><br><br><br><br>I hear ya! I have to prepare a week in advance just to do a seven hour away <br>trip in the car. My husband thinks I am crazy, but I do not have the energy to <br>have all laundry done, pack, clean out car, (usually full of beach stuff in the <br>trunk) get nails done (this usually gets skipped), gas up the car, have family's <br>gifts all ready. It doesn't sound like much, but I can only do one of these per <br>day.<br> <br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Feb 26, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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, Kay, question ,, would you mind sharing the name of the doctor you work with at Mayo? How many times have you seen her? Just curious? Hugs! Katherine

REPLY
faithup | @faithup | Mar 11, 2017

Hello , I have a couple MAC cavitations on my CT scan however I was not informed of the flying aspect. I will enquire about this with my pulmonalist and infectious disease MD. Thank you. Trish from Northwest, In

REPLY
Kay Strand | @kaystrand | Mar 11, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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 got OK to fly and I'm going to Europe. Yay! I've never heard of one other person told not to fly, so not sure if that was new or extraordinary caution.

Any suggestions for long flights?

REPLY
Jen_b | @jenblalock | Mar 11, 2017
In reply to @Paula_MAC2007 "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..." + (show)
@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

Hi Kay, I wear a face mask and wipe down everything with sanitizing wipes.

REPLY
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