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

Liked by Dee, chinasmom

@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.

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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.

Liked by Dee

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@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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@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

Liked by Dee

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@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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Hey Lindsey, glad you asked about NTM.

Liked by Dee

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John this site is a treasure trove. If one had to shell out cash for all the info available here it would be a fortune. Don

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@colleenyoung

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?

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@colleenyoung — Hi Colleen! I just wanted to share with you something. The video you attached shows Dr. Anne O'Donnell — She is my Pulmonologist at Georgetown Hospital. She follows me for Bronchiectasis and maybe now for the nodule that was found. She is a great and very caring doctor!
–Dee

REPLY
@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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@lindsey0918 You are echoing what many of us have experienced with bronchiectasis. Years of unexplained illness and misdiagnosis or none at all…then we hit on the right doc. Then fear when you get the diagnosis and start reading about it. Trust what people here are saying to you – it is chronic and incurable but manageable. I would call it a "life sentence" as opposed to a "death sentence"
Who diagnosed you, and what tests have been done? What if any specific treatment are you doing?
The NTM infections that come to those of us with lung issues are difficult to diagnose and even moreso to treat successfully. If you have access to Mayo or National Jewish health, they are the best, but there are docs all over the country who can treat you effectively. Just let us know where you are and you'll get recommendations.
Also, there are ways to manage bronchiectasis to live better- probably as many different treatment plans as there are people in this group. You will need to work with your doctor to figure out what works for you.
First of all, if you are chronically feeling ill, they need to culture your sputum to see if your lungs are infected with NTM or MAC and pseudomonas or other bacteria. Bronchiectasis makes you susceptible to these. A blood test or chest xray is not enough- they need to find the infectious organism using a sputum culture that takes time to grow in a special lab, and test to see which antibiotics will kill it.
Then, if you are infected, you and they need to decide on a combination of antibiotics and/ or other treatments. Not everyone needs or can tolerate long term multi antibiotic therapy.
A number of people here are using nebulizer 7% saline solution with or instead of antibiotics. In my case, 18 months of 3 drug therapy didn't cure the MAC infection and I was quite ill from the meds, so we stopped. I will find out in April whether saline is enough to keep it from regrowing in my lungs to the point where I am getting cavities again. Other than my routine asthma meds and a mucus thinner the neb to keep me coughing is my current treatment. After 2 months my stomach and intestines are beginning to heal, I'm starting to sleep better and I have a little energy, but still no appetite. I hope I never have to do the drug routine again but someday I probably will.

Liked by Dee, poodledoc

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@thumperguy

John this site is a treasure trove. If one had to shell out cash for all the info available here it would be a fortune. Don

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John I agree with you about the value of this site. I just recently found this site and have learned more by reading here than I have from all the doctors I have seen in the past 3 years for a chronic cough. I was diagnosed with Brochiectasis in 2019 after 3 years of a chronic productive cough. I have been treated by an allergist, sinus specialist and finally a pulmonologist. I live in San Jose California and receive my medicare health care from Kaiser Permanente. I would love to get to the Mayo Clinic but would not be covered by my health plan.

REPLY
@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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I’m so sorry to hear of your struggles. I have always struggled with bringing up mucus until my pulmonologist put my on a vibrating vest to assist. This has helped, although at times I still have some challenges. From what you have shared, I would be choosing to seek another opinion as this illness is challenging and not well known, which I feel requires the most knowledgeable medical personnel one can find. There may or may not be better answers, but I hope there can be better answers for you.

Liked by Dee

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