MAC and NTMs with Cavities
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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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.
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
<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>
@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
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
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.