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What’s the youngest person to have MAC?
MAC & Bronchiectasis | Last Active: Jan 25 4:53pm | Replies (29)Comment receiving replies
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.
Replies to "I’m 35 and was just diagnosed. Recently had my first child in September, went to the..."
I’m still waiting for CT results and haven’t started medicine yet. I think I’m going to call and see what the holdup is. I’m waiting on referral to infectious disease but I’ve had symptoms for a year which were dismissed as reactive airway by my primary care physician.
What are the symptoms you do have? Mine is a burning sensation in a specific spot in my right lung. This comes and goes but when it’s burning I feel feverish and sometimes short of breath and fatigued.
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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?