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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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No apology necessary. Thanks for the information. I am being recruited socially by great friends to join them just NW of Phoenix but I don't want to end up in a place that is worse for treating this condition than where I currently live. Thanks again.
Thanks for the explanation. It would be sort of like holding up a whole lung. From the outside you see nothing but if you could open it up like a book then you would see "scooped" out areas or holes. Thanks
I think I misled you somewhere. Sorry. I have not been diagnosed with MAC. When I brought up the possibility the doctor just brushes off the idea of me possibly having MAC because in his opinion most treatments for MAC fail and most people can't tolerate the treatment. I don't think he even realizes multiple ways to treat it, i.e. daily or 3 times a week.
I live in greater Phoenix six months a year. I was diagnosed by my pulmonologist in NH ( but I live 200 miles away in Maine). I was refered to NJH by a friend in Denver (also a snow bird in Az). Before committing to the travel cross country from Maine to Az each year I contacted Mayo Clinic in Phoenix. They told me they do NOT treat bronchiectasis. They specialize in cancer treatment. They told me to go to Rochester NY or Fl if I wanted a Mayo Clinic . Did they start treating BE in Az? I am very pleased with NJH and will continue to go there but it sure would be nice to have someone nearby when in Az.
Again I can't say enough about NHJ. I would reccomend everyone with BE to go to a facility like that.
Apparently not. Thanks for the info and your confidence in NJH
@busybeans this is helpful to hear. My local pulmonologist does not agree with the radiology CT reports (3 of them) but says she defers to radiology. The points of disagreement are significant so for the pulmonologist to just throw up his hands is frustrating and confusing. Looking forward to going over the imaging at NJH and hearing their take on it all.
Perhaps the radiologists in your area are familiar with NTM/bronchiectasis and know how to read the scan. I've not found one in southern Arizona that does. My doctor at NJH goes over my CT scan slice by slice looking at every nodule, mucous plug, and airway enlargement BEFORE reading his hand-picked radiologist's report. He then compares the previous CT with the current one to determine what changes (positive or negative) have occurred. Since these are my fragile lungs, I think it's imperative that I have the full, unedited, misinterpreted version. Good luck at NJH. After twice yearly visits for well over a decade, I am still impressed with the quality of care I receive there.
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2 Reactions@carolinediehl, bayarea58
I have mentioned elsewhere that I ventured up to NJH in October 2023 after being diagnosed in August of 2022 by my PCP (he finally orderd a C Scan after two ultra sounds) due to the weight loss that he watched me go through as I visited him multiple times during the period of 2020 - 2022 saying something is wrong I keep needing to clear my throat of this "substance." At that time all blood tests were good and my general health in 2022 was still up to snuff for my age so I'm sure that leads to a time a lag element before they realize they need to do more testing. I was concerned with all the visits I had made to him that he might be thinking I was a hypochondriac.
With a visit to NJH you will have a battery of tests and demonstrations. This is to help rule out any other problems that one might have or is of concern also. The tests that they do would probably take a year or more to do if doing them locally due to local scheduling etc.
I was very pleased with NJH, the lead doctor I was assigned to and glad I ventured up there.
With this Mayo site however there was more information to learn and and help with truly understanding, so glad to have both sources available to me, us.
P.S All the doctors I was seeing to get an answer for what I was experiencing, once I told them I made myself an appointment with NJH, highly praised the decision and had all good things to say about NJH.
Barbara