Connect
← Return to Starting MAC treatment with "big three" drugs: What to expect?
Discussion
Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
Replies to "Good gosh Sue! You must be a saint!! I was browsing through and saw so many..."
When did you first notice symptoms and make your pulmonary appointment??
Did your walking difficulty happen within a year of diagnosis? I am waiting for my second sputum test for contamination to verify my MAC. No antibiotics yet. Have you began antibiotics yet? I hope you breathing improves with time and good treatment. So young to have this diagnosis. Will send hope and prayer.
Connect
Um, no, my friends and family will assure you that I am no saint. But I am a Mayo Connect Mentor, a volunteer who watches a couple of specific topics and responds to others.
I want to assure you that anxiety and depression are VERY normal first reactions to the diagnosis of MAC and bronchiectasis. Your best ally is to get informed, and Mayo Connect and National Jewish Health (NJH - https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos) are 2 excellent places to start.
I hear you as far as the rapid fall from vigorous to wiped out! When I was diagnosed with MAC and bronchiectasis four years ago, I had been ill at first intermittently and then constantly with one asthma attack or lung infection after another for four years. I couldn't walk a block, and mostly just coughed and slept.
Worse, I was fearful and had never heard of MAC or bronchiectasis. And my pulmonologist was less than helpful. All of that led me to this group and Mayo Connect where I was able to get good information, support and encouragement from wonderful people who understood.
I learned so much from those who had walked this path before me, and were walking it with me that when I was asked to volunteer I was honored to accept.
Most of all, with this "rare disease," I learned that I need to be my own best advocate, and be as educated as possible because not all the professionals have the time to keep up on the latest treatments for a condition they may only see rarely. The second thing I learned was to ask questions. And the third is that, with treatment and good personal care, bronchiectasis is a condition you can live with, and are unlikely to die from.
So please take a deep breath, read here, look at NJH if you like, ask all the questions you have, and make sure you have a good care team.
What is the most pressing question I can answer for you this weekend?
Sue