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Just diagnosed with MAC with a cavitary lesion. Terrified.
MAC & Bronchiectasis | Last Active: Oct 19 9:54am | Replies (18)Comment receiving replies
Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I have. I know have to have the eye and hearing tests. I just want to run away to be honest. Doesn't sound like there's much to look forward to. I'm terrified of the big side effects. I've got the drugs to start - but too scared to take them especially not having a doctor I like/feel actually cares about what happens to me. Also - the doctor and I discussed whether I should stop drinking for 2 weeks before starting the meds - so thinking maybe I should do that, but keep putting it off - as once I start - doesn't seem like a good idea to stop unless dangerous side effects happen or can't tolerate. What I don't understand is how is it that something like this hasn't had more research over the years to find a better treatment option. Sounds like this has been the standard for a long time. I wonder if it's because so few cases compared to diseases like cancer that they don't put as much money into research. Very strange - when I also read that there has been a significant up tick in cases in recent years. Hoping against hope that they come up with a new treatment in the coming years that is much better than current option. Also - I wonder why more people don't have surgery if the treatment is not tolerable. It seems from what I've read - people that have surgery seem to recover/stay MAC free for much longer. Thanks for your kind words. Here's hoping for better days ahead for all. Any suggestions on how to find a MAC expert pulmonologist in the Washington DC area most welcome. I have an appointment with a young pulmonologist in September - earliest I could get - but feel I'd really like someone who has expertise with MAC.
Replies to "Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I..."
It is quite scary being diagnosed, I am young and have a 9.2cm cavity In my lung. Been on ethambutol, clarithromycin and rifampicin for around 3 months now and haven't had any side effects apart from the orange tears etc it can cause... Here if you have any questions to ask as I know it's very scary being told you have a hole in your lung
Hi - We haven't heard from you in a while - have you started the antibiotics?
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First, we all want to "run away" from scary diagnoses at first - whether MAC, diabetes, cancer,
Alzheimer's - it's human nature to protest "This can't be real."
Treatment is not easy, but it is definitely tolerable. A piece of cake compared to having part of your lung removed and recovering from major chest surgery. I wish there were far fewer "horror stories" floating around - many of us have found a path to staying healthy by continuing airway clearance after we finish the antibiotics.
As for waiting to start, if the ID doctor feels it is serious enough for a 7 day a week regimen, that's really not a good idea - the cavity will continue to grow, which means more lung tissue is being destroyed, and when it does heal you will be left with more scar tissue.
Don't discount your "young pulmonologist" - as a recent grad, they are more likely to research things and ask questions than docs who have years of experience. Even after you have seen them, you can always wait for a referral to one of the experts.
There is a great deal of research currently going on about Bronchiectasis and MAC - it was slow to start because of the limited number of people affected, but new treatments are coming. The problem is, you are sick now and cannot wait, so need to take the best available path at this moment.
Will you actually stop your wine this weekend, and make audiology and eye appointments?