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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
Replies to "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..."
@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
<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>
@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
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?
Hi Kay, I wear a face mask and wipe down everything with sanitizing wipes.
Jen do you wear a mask for the whole flight? What kind ?ThanksKay S
I do except when eating etc. Just the paper kind you get at the hospital or doctors office. When are you going?
@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
I too have a terrible time with weakness. What are others doing about weakness and getting out of breath over the least little walking.
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<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>