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MAC - To treat or not
I recently came down with an atypical pneumonia of both lungs caused by pseudomonas aeruginosa. Was treated for 14 days with cefepime. This all happened while I was away from home. The pulmonary doctor in the hospital suggested I talk to my pulmonologist when I got home about the possibility that in addition to my long standing fairly well controlled bronchiectasis, I might also have MAC. I also have RA taking Humira and am therefore immune compromised. 14 days of IV cefepime worked wonders until I finished the treatment. No more coughing or mucus but my breathing has gone downhill since. From seldom needing to use 3L of O2 to almost constantly needing. I'm a 75-year-old female. I went from one small nodule in my right lung (for the past 3 years with no change) to multiple nodules in both lungs. I asked him if I might have MAC and he pretty much cut me off by saying "your too old and frail". He went on when I pressed him on it to explain that the success rate is like 60% at best and many cannot tolerate the treatment. That and the fact there is no guarantee you won't get MAC again. I just want my life from 4 months ago back! Will all these new nodules heal? Is it not a good idea to treat IF I have MAC? We haven't even discussed a bronchoscopy.
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Thanks for the advice. I will consider it sooner, not later.
I live in Fort Myers, Florida. I still drive. More and more I am being convinced that I need to reach out beyond my pulmonologist. I don't see where Bronchiectasis and NTM or MAC seem to be on his interest list. And Infectious disease doctors here in Fort Myers want my pulmonologist to refer me. Won't see me without a referral even as a consult.
Can you check with Mayo in Jacksonville?
http://mayocl.in/1mtmR63
You can see them with or without a referral.
I live in the southern part of the state. How I wish Mayo in Scottsdale had an NTM clinic. They do not. I'm sure they have reputable physicians but none with the NTM specialty (that I know of...if anyone does, please let me know). They do have NTM clinics in Jacksonville and Rochester. As a result, I travel to National Jewish in Denver twice a year. I've been doing that since diagnosed in 2010.
The more I am on this website the more I find people willing to travel great distances to get their care from specialists. My question is, have people who do this find that the expense and time of flying to a distant location etc., has really been worth it?
Well I should probably just call it a cavity because that's what it is! The area where the cavity is even though it collapses is not tissue that you will ever get back so your lung capacity gets smaller and smaller. The more cavities you have. Sorry if I confused you with the use of the word hole although that is what the cavity is.
Do they have you on azithromycin, ethanbuterol, rifabutin? It's called The Big Three, some people can only take two of them. However, depending on what medications you're on. You should be on at least two of those if not all three to treat the Mac. For treatment of Mac you should be seeing a doctor who deals in infectious diseases/ID Doctor. MAC is not common. There could be many reasons why you may have gotten it. They have never figured out why I did. And I know many others that are in the scene predicament is me. However, you want to have someone treating you that knows how to treat this and is constantly getting updates on new treatments and therapies for it. Get a hold of someone in your network that's an infectious disease doctor and make an appointment. Most infectious disease doctors are going to treat MAC or if they have a clinic they will have doctors there that do treat it. I would not trust my treatment to my primary physician for it.