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3 months after ending big 3 after 18 months - Mac seems to be back
Hi everyone, I'm a 61 year old woman and I was diagnosed with Mac and Bronchietatas in 2024 and took the big 3 meds for 18 months til March this year. The CT scans showed the hole in my lung had reduced to negligible measuring size and honestly I was very lucky as other than the frustration of monthly blood tests and quarterly eye tests except for the first 10 days I felt fine. My night sweats and coughing resolved very quickly. I'm really unhappy with my infectious disease doctor as she was very loose with my treatment and never seemed to know my results or pay attention to my health. I couldn't get sputum up after the first couple of months so didn't get sputum tests and she didn't impress on me the importance of this before ending the meds. I just had another CT scan last week as have been coughing alot at night - a little during the day. I'm seeing my pulmonologist on 7 August - earliest appointment I could get. I haven't had to use airway clearance because I was never that bothered by it. My CT scan report to me - and AI seems to indicate Mac is back - but a sputum test - which I will get this coming week will confirm. Has anyone had a similar experience where it has come back so soon after ending meds. I really don't want to take ethambutol again as I feel like my eyesight has deteriorated alot even though the eye tests seems to say it was okay. Any advice most welcome. I'm super worried. Thank you.
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@visions63 my surgeon was Dr Robert Cerfolio at NYU ,he saved my life !
@visions63 in my case, my cavity (roughly 2 cm) did eventually close with antibiotics. It seems really hit or miss whether cavities close with antibiotics but certainly many do, so I myself agree with most specialists that trying antibiotics first makes sense for many. But when antibiotics are not getting one to convert their sputum, I think it’s important to reassess and look at all options. I know that my doctor at NJH takes the position that surgery is not a substitute for antibiotics, and requires antibiotics both before and after surgery. Also, many with cavities do sputum convert but don’t close cavities during treatment, and I have been told that is hard to interpret, that those cavities may close later, or never and yet the patient may remain sputum negative. Each of us has our own unique journey. So glad you had a positive experience with your surgery and are feeling so much better. That’s really what it is all about, isn’t it. Stay well!
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2 Reactions@bayarea58 ..thank you for all that info …much appreciated!!
Since I couldn’t tolerate the antibiotics for even a week ,that was my only choice .What do you mean by the Cavitary Mass “closing “??…It was a mass that consisted of active infection and Necrotic tissue inside and encompassed by a thick wall of dead ?white cells ….how does that close??
It is an overnight hospital stay ,( although I stayed longer due to a pre existing cardiac condition )and whole recovery was less than 6 weeks…,(actually only 2 weeks of real recovery ) .
I thank God everyday that I had this surgery and now have my life back again .If one can’t tolerate antibiotics,then why not go this route ? Antibiotic use is a crapshoot, it may work or may not work ,and if one greatly suffers from the antibiotic use ,then what kind of quality of life is that? I was 79 years old …..I wanted my life back for my remaining years and this surgery gave it to me .End result ,we all do what we have to do to survive ,and finding the right medical team is of most importance.Also know your body and what you can and cannot tolerate for the expected end results .,and know that there are options .
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1 Reaction@justaussie Hi Justine, I to am just in the process of looking for a new ID doctor, one who I hopefully feel is more attentive, supportive and reliable. Are you in Brisbane Australia? Reading your story was so so similar to mine, I was unable to form any sort of rapport with her as I felt she was lazy and it was just all too much trouble.
My Respiratory Physician could have looked after me far better than her. I agree with Mary, find a good caring, experienced Pulmonologist, one who knows what ‘Duty of Care’ means. Ditch your ID….. big hugs and I wish you all the very best. 🩷
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2 Reactions@kasper1 , please go to that care center doc even though>2 hours away, at least for a 2nd opinion. I ALWAYS learn something from each doc I go to. My son drove me 2 hours 20 minutes to Dr. Pamela McShane in east Texas (before she transferred to NIH in Washington). Then I had 2 telemed visits after that. I learned soooo much from her & her respiratory therapist that I saw at that same visit & also had a pulmonary function test & she insisted I get tested for CF to rule it out even though I am in my late 60s. I got that done at nearby childrens hospital. (I tested negative). I still have my local pulmonary doc, & Local Infectious disease doc, but I also had local 2nd opinion with infectious disease at the large teaching hospital nearest me. I told my local specialists that I will continue to see them; but I owe it to myself to get 2nd opinions, & my local docs were fine with that. So,please try & go & at least once, you will probably learn something. If Dr. McShane (care center network & MAC specialist) was still in Texas, I would still be driving the >2 hours to see her. *Consider it a day trip. We left early morning, arrived there at 10 for a 10:30 appt.; and we were back by 6 pm.
@visions63 I am so happy for you that the surgery went well and you are feeling so much better. I am sure you will be successful with putting some weight on as you sound like a very determined individual. God bless!
@mjb24 THANK YOU !
I just want people to know that there are choices ,everything is not always black and white!