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What’s the youngest person to have MAC?

MAC & Bronchiectasis | Last Active: 15 hours ago | Replies (16)
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@mrgm0924

I’m 35 and was just diagnosed. Recently had my first child in September, went to the ER 9 days postpartum with chest pain and some signs of infection. Was treated for pneumonia but the chest pain lasted for about 3
months. Have struggled to sort out potential MAC symptoms from normal postpartum symptoms (e.g. night sweats) but at this point I am largely asymptomatic. My pulm wants me to start treatment regardless because of how my CT looks (though this is also atypical) - the MAC was found from biopsy because I haven’t even been able to cough up any sputum. I had the same question as you do, would be really interested to hear stories from other young and healthy folks because it seems bizarre.

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Replies to "I’m 35 and was just diagnosed. Recently had my first child in September, went to the..."
Sue, Volunteer Mentor | @sueinmn | 15 hours ago

Welcome to Mayo Connect - and our support group that can answer many of your questions!

When an atypical patient joins us, I always want to say "First, find a pulmonologist who is a MAC expert." This is not a negative statement about your doctor, MAC/NTM experts are rare because this is a very rare infection. Even many experienced pulmonologists only see a case rarely, and may not be familiar with many of the latest treatment standards and protocols. My first pulmo treated 27 cases in 27 years, and I thought "Oh, that's pretty good" - until I realized that I was getting more up-to-date info on Connect than from him.

Now I have a pulmonologist whose practice is about half people with Bronchiectasis or Cystic Fibrosis, and who is up-to-date on how to manage MAC - often without medication. If you are in a large metro area, you may be able to find a well-versed doc, or you may need a consult at National Jewish Health (NJH), Mayo, NYU Langone or a similar center of excellence.

Did the pulmonologist explain exactly why you should start the med regimen? Are you looking for a second opinion?

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