1. < MAC & Bronchiectasis

Bronchiectasis: Understanding symptoms

Posted by tshubby @tshubby, Jan 8, 2018

Hello everyone. I am so glad to have found this group with so many knowledgable and caring members who know about bronchiectasis. My name is John and I am T's hubby (hence the username). T was diagnosed in 2014 with bronchiectasis. A bit more about T, she is a 51 year old never smoker. She also has a DX of long qt syndrome which is a heart rhythm condition that can cause chaotic and rapid heartbeat and other serious complications. Otherwise she is healthy. She exercises (walks 3+ mile regularly, is not overweight, does not drink, eats well, etc.). She is a elementary school teacher and is in contact with lots of sick kids. She does have significant allergies and she tends to have extra sensitivity to extreme temperature changes. The first blasts of winter tend to knock her out for a couple days annually.

When T was first diagnosed with bronchiectasis we actually breathed a sigh of relief thinking that she actually had lung cancer. Our local hospital did a CT scan that showed nodules and then a PET scan lit up in a way that can be consistent with cancer. After switching to more knowledgable medical team at a leading university hospital with a top lung center, we found out that it was actually bronchiectasis. Have others here had similar "false positive" experiences?

Anyway, fast forward to today and she is having more trouble. She was diagnosed w/ pneumonia around Thanksgiving, was put on a 10 day course of antibiotics. During this time she was also having pain in her back on one side and she has been losing weight (~30 pounds over ~3 months). She has had two incidents (about 3 weeks apart) of coughing up blood. The 10 day antibiotic course seemed to work even though she was miserable while on it due to stomach side affects. Nevertheless, she seemed back to normal. Then she went on a day long field trip with our daughter that required walking outdoors in very cold temps (December in the north east) for between 5-10 miles. It was after this that she began to feel bad again. All the same symptoms came back. She has had a another chest X-ray that looked like the one leading to the pneumonia DX as well as a CT scan that showed "masses" consistent with differential diagnoses of pnuemonitus and lung cancer. The doctor who ordered the CT is not her specialist (pulmonologist) and the radiologist who wrote the CT report does not know of her bronchiectasis diagnoses.

We have an appt this week with her pulmonologist (we have to drive couple hours to a different city to see him which is why the distinction between "local" doctors and her specialist who knows her full history). Despite the previous false positive and the similarities seen in CT scans, we are still nervous that we'll hear that this is not "just" bronchiectasis (not to discount the seriousness of bronchiectasis one bit). The thought of lung cancer is never far from our minds.

My question has to do with a couple other troubling things that have happened recently. She had a mental lapse recently in calculating a tip at a restaurant that resulted in a very nice Christmas present to the server. Such a nice gift that this was definitely NOT intentional so she is worried about cognitive function. Did I mention that we're both VERY stressed? Maybe that is a factor. The other incident had to do with urinary incontinence. This only happened once but it was very troubling to her, needless to say. It was as if her brain was unable to communicate to her body in a way that normally allows one to hold it.

Even though we know she has bronchiectasis, we are quite worried about: the blood coughing incidents, the weight loss, the back pain, the masses in the CT scan, something called "cavitation" also noted in the CT, the mental lapse and the incontinence. We see the specialist this week and will share all these concerns but I was hopeful that by sharing our story here that someone may have had similar experiences / insights into what we are seeing.

Many thanks in advance to all for your thoughts. And thanks for such great forum!

John

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

heathert | @heathert | Jan 10, 2018
In reply to @windwalker "@tshubby, Hello John, and welcome to our forum. I am so glad that you found us...." + (show)
@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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@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.

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tshubby | @tshubby | Jan 12, 2018

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

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @tshubby "Hello again. Many, many thanks for all the responses to my post. The insights shared were..." + (show)
@tshubby

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

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@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.

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1 reply
lindsey0918 | @lindsey0918 | Feb 13, 2020
In reply to @windwalker "@tshubby, Hello John, I am back. I can totally relate to everything that you wrote about..." + (show)
@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.

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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.

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lindsey0918 | @lindsey0918 | Feb 13, 2020
In reply to @jenblalock "Hi John. My experience was being diagnosed from a chest xray for pneumonia that showed a..." + (show)
@jenblalock

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.

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What does NTM mean please

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1 reply
lindsey0918 | @lindsey0918 | Feb 13, 2020
In reply to @windwalker "@tshubby , Hello John. Thank you for the update on your wife. They should have her..." + (show)
@windwalker

@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.

Jump to this post

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.

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4 replies
auntnanny | @auntnanny | Feb 13, 2020
In reply to @lindsey0918 "My doctors have me nebulizing ipratropium bromide and levabuterol is this not good for bronchiathesis? I..." + (show)
@lindsey0918

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.

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lindsey 0918 Lindsey, I'm just picking up your email and thought I would share a little bit of experience. I was horribly ill for at least 5 years before being diagnosed. Coughed constantly (I mean constantly) day and night. Was unable to go anywhere because it was just too embarrassing. I thought certainly I was dying. Lost lots of weight -- no appetite -- just ill. Had gone to 7 local doctors and specialists but to no avail. Finally out of desperation called Rochester Mayo's and they took me right in (10 hour drive from here). They diagnosed bronchiectasis within the first hour there. Told me I did not have cancer -- it is bronchiectasis and it's chronic -- not curable -- but they can manage it. Set me up with one of their pulmonologists and he started me on a program -- nebulizer first with albuterol followed by a vial of saline twice daily. I had a productive cough -- could fill a cup with horrid green phlegm several times daily. Sometimes people cannot cough up anything and the saline is supposed to help in that endeavor. I know they took me into a small room with a huge machine that was to help me cough up -- it dispersed heavy loads of saline. I told them I really didn't need the machine to get it up. Just give me a sputum cup and I could fill it. But, for those who could not get it up and out, the saline is probably your best bet. It comes in various strengths. It has been past four years now since I went to Mayo's and I continue to stay with them. If you are connected there, you have access to your pulmonologist either by phone or through the portal they set up with you. I asked up there if I were going to die from this (because I was so very ill my husband was pushing me in a wheel chair around the complex -- I couldn't walk that far). They told me I would die with it -- but hopefully not from it. The disease is manageable but you have to get with the right doctor. If you don't have a pulmonologist at Mayo's or National Jewish in Denver, I personally think you should make the trip. I've gone back to Mayo's twice just because I wanted to to be re-checked -- but it's not necessary. They can handle most of your problem through conversations and their portal. Also, they can send you the meds from their pharmacy if you'd like. I'm just here to say you can manage it. There are times when I don't feel like going and doing -- but at age 79, I assume that would be true if I had good heath. I drive wherever I want to go and do what I need to do now and can go out for dinner, etc. I honestly believe the answer is getting with the right doctor for you. Those who want to x-ray may as well forget it. Bronchiectasis doesn't show much of anything in an x-ray. Definitely have to have a cat scan for any reliable results. I know many people do cough up blood and I don't think that means you are dying -- just scary. If you can't cough up the phlegm, I would seriously look at a high strength saline. I know this is lengthy but I'm just wanting you to know many people on this forum had lots of experience and can help you more understand that there is someone out there who will be able to get you on the right path.

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baz10 | @baz10 | Feb 13, 2020
In reply to @lindsey0918 "My doctors have me nebulizing ipratropium bromide and levabuterol is this not good for bronchiathesis? I..." + (show)
@lindsey0918

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.

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lindsey@0918 Hi Lindsey,,I was put on a nebulizer twice daily using Brovana followed by an inhaler, Alvesco 4 years ago by an allergy/asthma specilalist, and have levalbuterol as a rescue inhaler. It has been a lifesaver for me. I was diagnosed with bronchiectasis, asthma, as well as copd. If I get an infection, I take a low dose of antibiotics for 5 days (child's dose) and it normally clears up. Best of luck finding what is right for your situation. Baz

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poodledoc | @poodledoc | Feb 13, 2020
In reply to @lindsey0918 "What does NTM mean please" + (show)
@lindsey0918

What does NTM mean please

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NTM stands for Nontuberculous Mycobacterium which covers many species of which MAC Mycobacterium Avium Complex is the most common. See
https://www.aboutntm.com/what-is-NTM/

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thumperguy | @thumperguy | Feb 13, 2020

Hey Lindsey, glad you asked about NTM.

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