← Return to MAC and NTMs with Cavities
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Replies to "Hello Kay, I have nodulary NTM, not cavitary. There are two manifestations of NTM or MAC..."
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
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
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
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.
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.
Dr. Huitt's response: she has had many patients with cavities that fly and that it is not an issue for the most part.
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
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.
@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
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