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tshubby
@tshubby

Posts: 2
Joined: Jan 08, 2018

Bronchiectasis: Understanding symptoms

Posted by @tshubby, Mon, Jan 8 1:05pm

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

Liked by chinasmom

REPLY

@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.

Liked by chinasmom, ling123

@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.

Liked by chinasmom

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

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.

Liked by chinasmom

@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.

Jump to this post

@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.

Liked by chinasmom

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

Liked by chinasmom

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.

Liked by chinasmom, ling123

@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.

Jump to this post

@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

@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.

Jump to this post

@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.

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 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

Jump to this post

@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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