← Return to Bronchiectasis: Understanding symptoms

Discussion

Bronchiectasis: Understanding symptoms

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

Comment receiving replies
@windwalker

@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.

Jump to this post


Replies to "@tshubby, Hello John, I am back. I can totally relate to everything that you wrote about..."

I have never spit up blood, or I don’t even spit up much mucus, but they tell me I have bronchiathesis. I get sick about every seven days, have been on antibiotics it’s like for months. I get a dry cough mostly, I got cdiff from to many antibiotics so they are careful with that. But, I wondered what kind of antibiotics the used on you ten days a month? They are now telling me they are going to stop treating me with antibiotics altogether which scares me to death. My life is non exsistent, I am frustrated and so sick of being sick. I don’t get to do family things anymore, because I’m always sick. I’m 60 and I just want this to end. Any help you can offer would be great.i just don’t understand why I never spit up mucus maybe it’s time to go back to mayo.