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.

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

Jen do you wear a mask for the whole flight? What kind ?ThanksKay S

REPLY
tdrell | @tdrell | Mar 11, 2017

@faithup hello l am on Mayo clinic Mac.....l am a retired RN...you mentioned you worked as nurse in Indiana...
l was diagnosed with MAC by bronchoscopy july 20016....I did utilize local resourses initially but realized quickly that the best route would be to go to Denver to National Jewish Health for the "expert" input. Which I did in January 2017. It was well worth it!!! I live in Wisconsin so flew there...lots of flights. If you want more info on how to contact....other details...would be more than willing to share.TerriD

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

I do except when eating etc. Just the paper kind you get at the hospital or doctors office. When are you going?

REPLY
Katherine, Alumni Mentor | @katemn | 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

@kaystrand, Kay, hope you don't mind if I jump in. With my and my husband's immune systems I carry a pack of Clorox wipes. First thing when we are seated we wipe EVERYTHING in sight around us on the airplane AND when I get to a new hotel .. .. if you just google: DIRTIEST THINGS TO CLEAN ON AN AIRPLANE .. you come up with things like http://www.today.com/health/what-s-germiest-place-plane-travel-tips-you-need-know-t71986 Also carry antibacterial hand wipes in my purse plus liquid antibacterial .. overkill maybe for some .. but my husband is still alive!

I hope you don't think I am paranoid .. BUT I have kept us mostly healthy through a LOT of travel this way! My attitude on the plane is .. I could care less if the people around me think I am nuts .. I am never going to see them again anyway .. let THEM get the cold/virus! And whoever you are traveling with wants you healthy and happy also .. so will not judge!

Personally .. on my last trip I bought a cute mask .. Cambridge Mask .. did a lot of research .. it is even good for virus .. can be purchased https://smile.amazon.com/Cambridge-Mask-Company-Pollution-Protection/dp/B01G7ATNH2/ref=sr_1_cc_1 (SIZING We have found that the best way to choose the mask is by weight. Size MEDIUM: 33 – 64kg= 73 to 141# ) Because I was in a VERY dirty area I carefully hand washed mine and it is just fine.

For long flights I always take an inflatable pillow, warm sox so I can take off my shoes, ear plugs and eye mask, good reading material and for me a warm jacket or sweater. That is all I can think of right now. Have an absolutely glorious time in Europe! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Mar 11, 2017

@faithup .. Trish, that is a really smart thing to do because every person has a different medical situation .. as you can tell from reading the above posts!
@jenblalock, Jen was told by Jewish National: Dr. Huitt's response: she has had many patients with cavities that fly and that it is not an issue for the most part. Plus as you can see .. @kaystrand .. Kay first was told No .. then was given the OK! So Trish just do your "due diligence" and check for your own personal situation. Hugs to you! Katherine

REPLY
suzylulu | @suzylulu | Apr 29, 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 too have a terrible time with weakness. What are others doing about weakness and getting out of breath over the least little walking.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 29, 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>Hi Suzy.I go to the gym to a class twice a week and stay active by <br>bicycling, walking, and lifting small weights. I used to have terrible shortness <br>of breath for years. I had impacted infection in my lungs. My long term use of <br>antibiotics have cleared most of it out, and now I don't get S.O.B. as bad. <br><br> <br><br>

REPLY
maureen2022 | @maureen2022 | May 26, 2022

Hi all, I have cavitary MAC and I see a doc who specialises in NTM infections at Sunnybrook in Toronto. I have not received advice about flying at all. No one has even mentioned it. Thanks, would like to know any opinions on this as well.
maureen

REPLY
bellsina71 | @bellsina71 | Feb 21, 2023

I'm not sure if you're on here anymore, I know this post is so old! I believe this is the Mac I have and it's in my upper right lobe as well. I have a large hole there. 3.2 CM by 2.7. I'm not sure what they're going to do yet I have to see the infectious disease specialist next Tuesday. I'm very scared. Did you ever have the surgery? Thank you for any information you can tell me

REPLY
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