Bronchiectasis: Understanding symptoms

@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.

@tshubby, John, I have to leave to go out for dinner now, but I will get back to you when I return tonight. I have a lot to share with you.

Hi John (@tshubby), welcome to MAC & Bronchiectasis group on Connect. Thank you for such a detailed account of your wife's recent diagnosis. I'd like to introduce you to several members who can share their experiences and give some insight to the very good questions that you ask. Please meet @windwalker @tdrell @ling123 @jenblalock @chinasmom @kaystrand @boomerexpert and others.

While we wait for other to join this discussion, you may also wish to read these discussions that have a wealth of information:
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX
- Do Bronchiectasis and MAC go together? https://connect.mayoclinic.org/discussion/bronchiectasis-234ff2/

Also here's a video on bronchiectasis and why the blood
https://youtu.be/YeomndWSom8

John, you ask great questions about weight loss, spitting up blood and cavitation. Mental lapses and urinary incontinence are not side effects of bronchiectasis that I'm familiar with. But they certainly can be related to the extreme stress that you are under. Be sure to mention these side effects along with the others when you meet the pulmonologist this week. Does this pulmonologist specialize or have experience with MAC and bronchiectasis?

I think my first step would be to ask for a culture and make sure it tests for MAC. I would also ask to make sure the antibiotics they prescribe do not further cause QT prolongation. Some antibiotic do.

Also, all of us on antibiotics need to be careful too when we talk about adding supplements. Some antibiotics can prolong QT on ECG and some supplements can also affect how we metabolize these drugs and further prolong QT. I try to research to look to see if there is any interaction with herbals etc. I don't want to scare everyone but we have to make sure we do our homework or even ask for a ECG it on the big 3 or supplements to see check the QT interval. I think there is a web site called credible meds that lists things that can cause problems with QT.

@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.

@tshubby , I just re-read your post, the word 'cavitation' has me concerned. Is this cavitation due to the type of bronchiectasis, or could T have mycobacterium abscessus? These are IMPORTANT questions to ask the doctor. I would not wait until the next appointment, I'd call on the phone and ask for an answer. We, on this site, have found that the more we know, the more empowered we are to tackle this disease.

100% agree. That is what is sounds like to me too. I would insist!!!!!

Hi John. My experience was being diagnosed from a chest xray for pneumonia that showed a cavitary lesion. At that point I was sent for a CT scan which showed bronchiectasis and another cavitary lesion. I too, was afraid it was cancer but the pulmonary doctor was pretty certain it wasn't because of the locations and that they were solitary and far apart from each other. I was then tested for NTM infection which came back positive. It too, was always healthy, didn't smoke, and exercised regularly. Has your wife been tested for infection? They normally do this with a sputum culture or if that is unsuccessful then a bronchoscopy. That would be my next step for certain.

My story: I went on medication for the NTM infection and also Amikacin for the cavitary lesions. I am happy to report that the medication worked and the infection cleared up. I was on meds for 15 months total. The lesions are still there but are not growing and have gotten a bit smaller. One has filled in but not sure what that means. I, of course, still have bronchiectasis because that is forever but otherwise am back to living a fairly normal life.

And regarding urinary incontinence. I did develop that but I am also 10 years older than your wife. I think when the infection was active I was coughing a lot and that may have weakened my bladder. That plus age in my case.

And regarding the cognitive blip. I really wouldn't worry about that. It's easy to miscalculate a tip when you are under stress. I once accidentally gave my stylist a 50% tip instead of 20% For some reason I took half of the total instead of taking 10% and doubling it when calculating in my head. Distracted was all.
My suggestion is to laugh that one off and move on. We are only human after all.

Best to you and T and please let us know how your pulmonary visit goes.

@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.