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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just like you, I'm not immunocompromised and have been very active as well, playing tennis all year round several times a week. I've never smoked and rarely drink. But I coughed up huge amount of blood completely out of the blue one day (after having played tennis for 1.5 hours no less). I spent a night in the ER and continued to cough up blood until the small hours of next day. The words "TB" and "lung cancer" were throwing around all night long and everybody immediately gowned up and put on face masks. I was terrified and feeling completely alone although my husband was right there by my side. When my diagnosis came, I was caught off guard as I had never heard of MAC. The only difference that you and I now have is that, after the blood bath night, I went back to lead a normal life and I still am, with no treatment of antibiotics and no symptoms that others have complained of having, such as fatigue. However, I do still cough and have thick mucus. I don't expect that to go away any time soon, or maybe ever, due to my bronchiectasis. And I'm learning to cope with it the best I know how and not to let it hinder the way I would like to live my life. Hope you eventually find a treatment that suits your situation and gets you back on track to being active again. I'm sure it will happen. We just have to keep a positive outlook and never give up.
Replies to "@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just..."
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@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers