← Return to Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

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@cmi

Thank you Erika & Irene. Erika, I am not alone…I have the most adoring and present husband who is participating and supporting me every minute of every day. Two most amazingly gorgeous and dedicated adult daughters who smother me with attention and love …Irene nailed it. MAC the ghost from past centuries…”the consumption…phthisis…tuberculosis…” had gone quiet in this country. Vanished with other bacterial and viral maladies with our evolution in healthcare and lifestyle….pretty much a remnant that still haunts are neighbors in the underdeveloped countries in undocumented numbers. This I know because I have had the blessing of living in Central & South America as a child.

The aloneness is navigating the narration (because I have never had to do it)…in creating the storyline to tell friends & loved ones what I’m now going through, the explanation (that doesn’t exist), the plan (which could fall apart in a minute if I do not tolerate the meds), the prognosis (which is an uncertain outcome), and what I am reading and hearing from all of You….beautifully supportive strangers that have come together. Honestly, this forum scares me…I understand the selfless gift of giving of personal experience, but reading the details of your treatments and setbacks…is depressing me.
Blogs and forums give much information…but do not reveal our life’s character…our nature that can only be formed by our individual life experiences. I am a stranger to all of you…but those that know me in my life…know me as a problem solver, director, dictator, giver, best friend, first there last to leave, show me the facts person, that must live with reality illuminated by the light and positive possibilities. I can deal with a poor outcome, but It will be last with resolution and surrender. I have to act, pronounce and believe in a successful end. I must remain in light and hope; the alternative is my darkness…the kind of darkness each and everyone on this planet has felt and lived at some time during their existence.

So you received more than a quick answer I know…but I have been doubtful about my participation in this forum.
I pray everyone of you find wellness…of body, mind, and soul.

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Replies to "Thank you Erika & Irene. Erika, I am not alone...I have the most adoring and present..."

@cmi Please consider staying with us – your personality sounds very much like mine, as does your family. My first months after the MAC diagnosis were marked by fear, insecurity & depression, then I found Connect. Like you, I was overwhelmed by the frightening details and unsure if I could continue. Then I looked "under the hood" and realized that most of the people here were projecting hope, and determined to live their best possible lives. When you see the "depressing" parts, please realize that we are often venting, or asking for help, from the only people who can really understand what we are experiencing.

Over time, I developed a philosophy. I decided to live my fullest possible life with bronchiectasis and MAC, taking prudent precautions, but not allowing it to rule my life. My body tolerated the meds for 18 months, not well, but enough to get the infection under control. From this forum, far more than from my doctors, I learned how to cope with medication side effects, the importance of daily airway clearance, the efficacy of 7% saline nebs, and the absolute necessity of finding the best possible care team and advocating for myself (even though this did get me "fired" as a patient by my first pulmonologist.) I also found this group to be much more of a source of research-based information that a typical blog since it is moderated both by Mayo staff and volunteer mentors.

Now, with the MAC controlled but not cured, I take obvious precautions, like not using hot tubs, keeping my equipment clean and avoiding sick people, but I have made the personal decision not to curtail travel or visits with my grandchildren. Others whose disease is worse, or who have other major concerns, may take more.

Whatever decision you make about continuing to visit us, I wish you all the best in your treatment.
Sue

@cmi I’m sure it must seem a bit overwhelming and depressing to read about others treatments. But there are those of us on here who don’t take any antibiotics. Some of us just exercise and watch what kinds of foods they eat, some of us just do lung clearance exercises, some inhale 3 or 7 % sodium chloride, and some do a combination of the above. We may all have bronchiectasis and/or NTMs but are all on different journeys with our disease. Personally, I come on for support and to know that IF I have to go on medication I know there is a place and people who are here to help me navigate. For me when I say “bronchiectasis” and people have never heard of it, I just say “kind of the opposite of asthma, bronchial tubes stay open instead of close up, causing mucus to build up making it hard to clear or breathe.” I know it’s a very simple description but its close enough. Some people ask for more info or clarification and others understand it it.
I think we’ve all felt as you do at some point.