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.

Hello again. Many, many thanks for all the responses to my post. The insights shared were very valuable and greatly appreciated. I can't reiterate enough how comforting it has been to find this forum and the caring people who share their knowledge and experiences.

A quick update on our visit to the pulmonologist. He took a look at the recent CT scans & x-rays and compared them to CT scans from 1 and 3 years ago and it appears that T's bronchietctasis may have worsened some but that it will be hard to be sure until her current case of pneumonia is cleared, thus confirming that the most recent CT scan report (with alarming references to lung cancer) was not accurate. It was written by a radiologist who is unaware of T's history and her bronchiectasis. We were advised by our Dr. to only have tests done and evaluated (if possible) by those who are knowledgeable about her condition in particular and bronchiectasis specifically. So on the one hand we were relieved, but on the other we know that we still have a serious disease to deal with.

We did a sputum test and we're scheduled for another CT and lung function test in 8 weeks. We were given a new 14 day course of antibiotics to target the pneumonia and some great advice to take it before bed to hopefully sleep through the stomach upset that the last courses had caused. She'll also be taking extra strength mucinex to help get the mucus out. We feel much better about our level of understanding of all this and are hopeful that a more proactive approach on our part will benefit us. Being in this group is a big part of being proactive.

Next steps are identifying the bug and seeing how the next CT and lung function tests look. Again, we have a long way to go but we are so happy to know there are resources out there to help us along the way.

Thanks again to all and I hope everyone has a happy weekend!

John

@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.

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.

@tshubby , Hello John. Thank you for the update on your wife. They should have her sputem results ready by her next appt in eight weeks. If she doesn't already have a prescription for 7% sodium chloride, you may want to have her call her doctor and ask about it. It is a nebulized saline solution that really works wonders on helping to bring stuff up out of the lungs. It works by three ways. (1) it irritates the lungs just enough to induce deep cough (2) it moistens the phlegm to thin it; bringing it up easier (3) has anti-inflammatory properties. Many of us on this site are not infected at the moment, but, use this as a daily cleanse. It is also a good preventative measure in that it keeps the mucous thin so that it is not such a good environment for bacteria to take up residence. We wish your wife the best, please keep us posted on how she is doing. Maybe, when she is feeling better, she may want to get online with us.

My doctors have me nebulizing ipratropium bromide and levabuterol is this not good for bronchiathesis? I have been sick for months, I never really coughed a lot until recently. But my lungs hurt a lot , and recently I can’t get better. But it’s always a dry cough. No mucus ever comes up except a time but, and I don’t even feel like there is mucus there. This is my first time researching bronchiathesis and I’m in shock, and can’t quit crying. I don’t understand it and I’m scared to death. Has anyone had any success in quality life? I seem to be sick every seven days , now my doctor wants to treat it with no antibiotics, just let me cough. He has given me a inhaler Flovent.
Sincerely, don’t know if my dr even knows how to treat this.

My doctors have me nebulizing ipratropium bromide and levabuterol is this not good for bronchiathesis? I have been sick for months, I never really coughed a lot until recently. But my lungs hurt a lot , and recently I can’t get better. But it’s always a dry cough. No mucus ever comes up except a time but, and I don’t even feel like there is mucus there. This is my first time researching bronchiathesis and I’m in shock, and can’t quit crying. I don’t understand it and I’m scared to death. Has anyone had any success in quality life? I seem to be sick every seven days , now my doctor wants to treat it with no antibiotics, just let me cough. He has given me a inhaler Flovent.
Sincerely, don’t know if my dr even knows how to treat this.

What does NTM mean please