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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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It has most likely been a year. I would have understood it more if a recent sputum culture would have shown different results.
Diana
In your situation, I would be looking for someone well-versed in MAC. 2 years on the meds, then upping the doses without testing or discussion is not good practice.
Sue
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2 ReactionsThank you as that is what my own thought leaned toward. Now how do I find a pulmonologist that is well-versed in MAC?
The only tip off I received was Express Script had my records and knew from another medication for a different problem that I’ve had trouble swallowing large pills since radiation for tonsil cancer. They cancelled that order when they heard nothing back from my pulmonologist.
If you have a pulmonologist or pulmonology group you want to see, call and ask who is experienced. For an individual doctor, look up their profile, which will show their certifications and areas of interest or specialty. Otherwise, check with your nearest teaching hospital or medical school for a referral.
I f you happen to be near a Mayo Clinic (Rochester, MN Jacksonville, FL or Phoenix, AZ) National Jewish Health (Denver, CO) or University of Texas, Tyler all have excellent Bronchiectasis/MAC treatment centers.
Sue
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1 ReactionWe live just south of Tampa FL and my husband has been encouraging me to go to Mayo Clinic in Jacksonville, FL. I’m beginning to agree that may be the best idea.
Mayo is absolutely a great choice, if they have the capacity to see you. It may take a bit to get your appointment, so you may need to find someone local from the NTM list in the meantime. Not a bad idea anyway, since Mayo's preference for chronic illness is to see and diagnose you, get you a a treatment plan, the see you once or twice a year with visits, if necessary to a local specialist in between. This is how my brother's treatment of chronic severe allergic asthma works at Mayo in MN.
Sue
time for a second opinion...investigate where....even if it means travelling.
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1 ReactionNational Jewish Health in Denver is amazing. They are some of the best for lung disease. I went there in June and had a full work up. They gave me more information and help then my pulmonologist has in 5 years! Worth the trip and investment.
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8 ReactionsYou can join the Fri afternoon family session for free but the online registration link doesn't work if you are not a medical professional with credentials. Call their office at 843-876-1925, a very nice lady there took my registration over the phone.
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