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Bronchiectasis: Understanding symptoms

MAC & Bronchiectasis | Last Active: Feb 24, 2021 | Replies (28)

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@windwalker

@tshubby, Hello John, and welcome to our forum. I am so glad that you found us. I am sorry to hear that you and your wife have to deal with this disease. It can be horrible, yes, but it is possible to improve her health and keep it from progressing. There is no cure for bronchiectasis, but there is a lot of preventative measures she can take to keep it from getting worse. She can start by not walking outdoors in frigid temperatures. The cold air causes inflammation to lungs that are compromised. My husband could have written this paragraph and it would have fit my story to a tee. FIRST and foremost, she needs to see not only a specialist, but one that has treated at least 12 patients with bronchiectasis and MAC. She also needs a good infectious disease doctor. You two need to learn ALL that you can about this disease. There is a lot of good info here and online. You can Google Mayoclinic.org then enter key word: bronchiectasis and info is available. Many medical teaching institutions will have accurate info on this disease. The fact that your wife is coughing up blood; that is a symptom of infection. The infection most likely is either Avium Mycobacterium (MAC) or a. pseudomonas. these can only be found by lab-work using a sputem test. Has she had a sputem tests? The test results take up to 6-8 weeks to grow the culture for the mac, am unsure of for the pseudomonas.

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Replies to "@tshubby, Hello John, and welcome to our forum. I am so glad that you found us...."

@tshubby, Hello John, I am back. I can totally relate to everything that you wrote about what your wife is going through. I have experienced every single one of the things that you had mentioned. I experienced them for YEARS! John, I didn't mean to sound like a 'know-it-all' when I mentioned the bacteriums that T might likely have; it's just that people with bronchiectasis tend to catch those two and others at some point. The coughing up of blood is usually a good indicator. If a sputem test was not done to test for these SPECIFIC things, then I would insist that they be done. I was treated for pneumonia for years, turns out, it was MAC. I had the rapid heartbeat thing going on which sent me to the emergency room by ambulance several times, where they stopped and restarted my heart, loss of bladder control from constant, severe coughing, I rapidly lost 34 lbs, could not walk 20 feet without stopping to rest, was told in 2013 to start thinking about a double lung transplant. I coughed non-stop, sun-up to sundown. I am telling you my story because I got better. If you met me today, you would never guess that I was that ill and still function quite nicely with 37% lung function. I did not have the big three antibiotic regimen that most people get. I chose a different route that my Mayo doctor wanted me to do. The regimen that worked for me was alternating antibiotics for 10 days each month for three years. I contracted pseudomonas in 2016 and was treated, it was gone in 30 days. Now I am on a prophylactic regimen of one a month antibiotics. I have not coughed in close to two years, I ride my bike for however long I want to, I climb my stairs with ease, I dance, I take log walks, I do not pee my pants, my heart rate is normal. I go to the gym three times a week and do a one hour cardio class. John, I am not cured, I am only rid of infection and am under the best care. Getting proper care was key to turning my life around. Please feel free to ask as many questions or share your experiences with T on this forum, we are here for you.

@windwalker I totally agree with trying to avoid being outside in frigid temperatures. Breathing in cold air always causes me to cough more and brings up more thick mucus. Actually it even happens when I'm cold indoors. But as soon as I feel warm again, my condition improves dramatically. Also, it is the flu season right now. We must try our best to stay away from the viruses. I wash my hands very frequently. Knock on wood, I have not caught anything so far although many people around me have gotten sick. I had bronchitis last winter that started out as laryngitis. Went on antibiotics for 10 days that took care of it. But for those of us with bronchiectasis, we can't afford to have infections in our lungs over and over. Although bronchiectasis has no cure, it doesn't mean we can't take measures to keep it from progressing.

@windwalker I also agree with the cold air being a problem, I have had that problem since a child, but think it is worse now with bronch.