I've only been diagnosed as a bronchiectasis patient.
Symptoms first exhibited as a toddler... fever, fatigue, congestion, dehydration, loss of appetite, rapid pulse, colored sputum.
Bronchiectasis confirmed at age fourteen.

I started out with a cough. I complained to my PCP for over a year. The cough was not every day but it was annoying. I also complained that when I laugh I cough. He sent me to an allergist. I tested negative to every test. He sent me for pulmonary function tests. It was determined that I had asthma. I was prescribed a rescue inhaler and a daily inhaler. I was still coughing but not as much. That was 2016. In January of 2020 I got sick with what we thought was a sinus infection. The infection seemed to go away but I was left with a daily cough. The cough got worse. I started using a nebulizer and I did several rounds of prednisone that did nothing but give me heart papitations. I was admitted to hospital due to heart rate, shortness of breath. I tested negative for covid-19 and they sent me home. I insisted on follow up tests. It was determined that my heart was okay. I was still coughing all the time and getting short of breath. I went to pulmonologist, virtually... not my choice! He looked at my chest CT scan and said it's your asthma. I found a new pulmonologist who looked at my chest CT scan and immediately diagnosed me with bronchiectasis. It took four years of complaining to get a correct diagnosis. I'm still coughing all the time but at least now we have a plan in place to keep from getting infections.

I think the questions and answers are a great idea. The only problem with diagnosis question is that most people have never heard of bronchiectasis therefore they will probably not find their way to this site. I hope they do.

I am willing to answer any questions. I came to this site for support and to educate myself better. I know from experience with a chronic pain group that people figure things out that doctors don't know or don't ever mention.

Thank you for coordinating the question and answer section for us.

Franny,

So true. Experienced patients share what they have learned on their journey- you will not get this “ hands on” education from a busy doctors office. We are here to assist one another

I wonder if there are other people like me out there. I'm convinced that 20 years ago I had active bronchiectasis. I had flares of what I thought was COPD every six weeks to two months and seems to have a constant productive cough. It would get better with antibiotics, but it would be back. Then I was hospitalized with chronic respiratory failure and had three days of IV antibiotics and prednisone. That whole thing scared me enough that I decided to really take control of my health and went on a very aggressive diet and exercise program. Once I started that, while I would get sick every once in a while, I never had those "rolling flares" ever again. Over the past 15 years I've had two or three exacerbations that required both antibiotics and prednisone to get over, but I have not been hospitalized since 2003.

About eight years ago a CT scan included bronchiectasis in the report, but it was just a reference and no one even mentioned it. I looked it up, kind of thought, "Oh, that's what that was" and didn't think anything more about it. A couple of years ago it was mentioned again in another CT scan report. This time I had a new pulmo and he's the first person who's ever spoken the word to me. When we looked at the CT scan he said your bronchiectasis isn't causing problems and you have no mucous plugs.

I've not talked with him about this, but I think it was very active before I was hospitalized and now has been inactive/dormant/in remission/ something. Is this something others have experienced?

I had a dry cough and it just kept getting worse instead of better. It took over a year to get the final result that I have MAC, I have been on antibiotics for a year and a half now so in December we started a inhaler called Arikayce and let me tell you it is hard. I have had to quit my job and that alone has really gotten to me. I have had to fall back on doing it everyday to 3 times a week because of all the bad side effects. The sad thing is no one I know can tell me anything about it so hopefully on this group someone else might be going thru the same thing and give me advice.

Pk f,

Hello! Welcome to the site. I am not on Arikayce, I hope that other patients who are on arikayce can chime in.

Yes, it is very challenging to be diagnosed with a chronic disorder, not knowing anyone else in your shoes. I have been there...

We are here for you. Kati

no symptoms

Chest X-ray an cat scan showed both ntm and bronchietasis

Has anyone tried and been successful with a holistic approach or acupuncture

Cozy,

Hello! Accupuncture can help my calming our minds, opening the energy within our bodies to promote healing. However, there is no scientific data,( that I have read over the years) to prove that it can rid one of the infection. An experienced NTM Pulmonogist and ID, Infectious Disease Doctor are your best bet.

The ATS , American Thoracic Soguidelines suggest monitoring some patients who are a symptomatic for awhile, dependent upon the cat scan.

Are the meds as bad as I have read? I’m concerned about taking them and 2 years later finding out it comes right back

Cozy,

Hello! Is your doctor very experienced with NTM? If not, seek another opinion before starting meds.

Yes, the reoccurrence rate is quite high but you can learn preventative measures to reduce the risk on this site.

Some patients can tolerate the meds, some have difficulty with side effects. It is very important to eat well, take prebiotics and probiotics throughout the course of the treatment. Gut Health should be monitored by a gastroenterologist.

Please keep us posted. Kati

At the end of 2016 while on a Christmas vacation, I started coughing up light colored sputum with brown-black matter in the middle. I remember saying, "This is weird. Why is this happening?" When we got back home two weeks later I went directly to Urgent Care. They did a chest film and the attending doc came into the exam room scratching his head. He had no idea what he was looking at. He called a pulmonologist who said, "I know what that is." The doc was seeing mucus plugs in my airways. I was put on Levaquin for the bacterial pneumonia and the pulmonologist told me I had bronchiectasis. (Ironically, my spouse has just recovered from a bout of bacterial pneumonia -- I hope he doesn't end up with bronchiectasis as well!) A few months ago I fired that first pulmonologist and am now under the care of a bronch specialist at Stanford Medical Center. I did pretty well on my FEV test recently. My new pulmonologist said I have "really very mild bronchiectasis" and pointed out that while I am almost certainly colonized with NTM, I haven't had any symptoms.

I lost 80 lbs last year but I don't think it was due to the NTM. I suffer from Generalized Anxiety Disorder. When I get anxious, I stop eating.

I was diagnosed with NTM approximately 10 months ago after seeing a new pulmonary specialist. The previous specialist who I had been seeing for 10 years just kept telling me I had emphysema from years of smoking.

Over the past 10 years I had numerous chest infections including pneumonia (x7), BOOP, Swine Flu, Whooping cough etc.

The new specialist did a bronchoscopy and diagnosed NTM.

I was diagnosed by bronchogram in 1953 after several bouts of pleural pneumonia. My mother told me that she had to fight for months to be taken seriously and was accused of being a fussy mother. My early treatment was very poor in the absence of antibiotics and management tecniques.

At five I had another pneumonia and would have died if my GP had not defied convention and given me penicillin injections.

When I was six we found a radical specialist in Leicester. Dr Mckenzie. He had been treating TB and having mostly irradicated it, turned his attention to bronchiectasis which he considered to be badly ignored ( so what has changed).

Between 1956 and 1964 I attended Groby Road Hospital on a weekly then monthly basis. I learned how to breathe and how to empty my lungs. I had a wooden frame and was laid over this and banged on the back by my mother twice each day to empty my lungs. I also had to do my breathing exercises twice each day.

For six years I had penicillin and alavair through oxygen twice a day. My mother had to return and collect an oxygen tank every week. Oral antibiotics, beginning with chloramycetin, penicillin and so on, were gradually introduced for exacerbations.

I was thrown into swimming pool, marched up cliff paths and never allowed to get out of games.

I had a normal schooling, went to grammar school then beauty college and off into the world as a discjockey in clubs around the world. I married in Beirut, had a child there, escaped the civil war in a tank, pregnant with my second child. I have had a full life and am still going. I am almost 71.

I was lucky that in 1982 I met Rob Stockley, probably the finest research bronchiectasis specialist ever and the man who taught the US that bronch is a condition in itself. I was under his care until he retired from clinical work and for the last twelve years I have been with his pupil who is also important in the British Thoracic society.

Obviously treatments have moved on somewhat, the oxygen tank replaced by a nebuliser, more complex oral antibiotics and IV antibiotics if needed.

I despair that bronch is still the poor relation. That we are discriminated against in terms of drugs, treatments and services compared to cf. I spend hours trying to help people with bronch who are suffering at the hands of GPs and some general respiratory consultants whose knowledge and experience of bronch is woeful. They tend treat them as though they have copd. Bronch is so much more complex and individual to each patient. The important thing for bronch patients is that they are educated in their condition, recognise when it changes and know how to manage it, both on a daily basis and seeking expert medical help when it gets out of hand.

My first clue that something was wrong came back in 2011. I was hospitalized with colon cancer and my CT scan showed "tree and bud" clusters on my upper lungs. No one at the hospital ever mentioned the finding because they were focused on my colon. Fortunately, my cancer was stage 1 only required a colon resection and annual colonoscopies and CT scans. During my first annual follow up, my oncologist mentioned the "tree and bud" nodules which was news to me. Fortunately, my PCP is a pulmonologist. He said I had bronchiectasis but that he wasn't concerned because I was asymptomatic and it was something we would monitor. The nodules appeared on all my scans and I thought nothing of it.

But then about three years ago, I had a nasty flu and developed a bad cough. I thought it had improved but I had a lingering cough that would show up after meals. The cough was unproductive so I assumed it might be GERD. I followed up with a gastroenterologist but there were no signs of reflux. I thought I might have slient reflux and tried antacids but nothing stopped the cough. I just learned to tolerate it. My primary suggested I do a sputum culture but I kept putting it off. The cough didn't seem so bad.

Last February, my oncologist insisted I be more aggressive to find the cause of the "tree and bud" especially with Covid on the horizon. At this same time, I began to feel like I had some sort of sinus infection. I was run down and starting to cough up more mucus. I reached out to my primary, only to find he was on medical leave for a serious blood disorder. I still had an order for a sputum culture so I submitted a sputum specimen. In the meantime, I went to see another physician in the office who was very abrupt and told me it was just asthma. I have three sons with asthma and I knew this wasn't asthma. I made the mistake of self treating with a Zpac I had on hand. It made me feel better for a week but then the coughing and night sweats came back. I went to see another doctor who put me on 10 days of clarithromycin. I felt better but then as soon as I was done it came back. I also began to cough up what I assume are bronchial casts or plugs. They looked like grey worms. Out of the blue, I got a call from my primary doctor who was at home waiting to undergo his treatment. He had gotten my sputum culture back and I had tested positive for MAC. I was soooo relieved to hear from him. When I described my symptoms, he first forbid me to ever take another antibiotic without his permission and explained that azithromycin and clarithromycin were the silver bullets we would need to treat MAC. He said the acute symptoms I was experiencing were due to an exacerbation of my bronchiectasis. He put me on two weeks of Levaquin and I finally began to improve. I continued to cough up large dense plugs but the cough finally went away. I found an NTM specialist a few hours from my home. He put me through a battery of tests and reviewed my CT scans. He also recommended "watchful waiting" because I didn't have severe symptoms. No fatigue, no weight loss. He started me on inhaled saline for airway clearance. I do that several times a day and still cough up small amounts of mucous or the grey stringy plugs several times a week. I have asked both doctors about the new guidelines for treating NTM but both still recommend waiting and monitoring my condition through CT scans.

First symptoms noticed - cough when on my back, usually in an exercise class or sometimes at home, luckily, I don't sleep on my back. About couple of years later I had noticeable reduction in ability to breath. I noticed this during exercise and confirmed by PFT.

Time to confirm diagnosis - TOO LONG! I had been referred to a pulmonologist in 2009 when an unrelated CT showed something, he said he thought it was MAC, but said I was fine and even when treated most people don't tolerate treatment. I said OK, I wasn't really symptomatic, except for the cough. 2013 symptoms began to worsen, my breathing and PFT declined he still said I would be fine, and wouldn't do a biopsy to confirm since the treatment was so difficult. In 2019, I insisted on the bronchoscopy to confirm and it was MAC. He still didn't want to treat, I insisted and started the 3 drug regimen, three times a week and after 1 year of treatment I still had MAC. I finally went to National Jewish. They said given my stage of disease I should have been put on daily therapy, not three times a week. After 6 months of daily, the MAC is not longer detectable!!!

Both NTM & Bronchiectasis - My pulmonologist continued to discourage treatment even as my quality of life decreased and I began to lose weight. I finally insisted on treatment, started the 3 drug regimen, managed it well.

Thanks for setting up this forum. I've been wanting to learn what is going on with others!

I can honestly say that being the baby of four children, I hold the record of much illness compared to my siblings. Now that I am sixty, I still recall getting red throat and tonsillitis at five and six years of age. At seven, my tonsils were removed. However, by the age of nine, pneumonia set into the right middle lobe of my lung. Rounds of penicillin could not reach the infection; therefore, in the summer of 1970, I underwent the surgical removal of my middle right lobe. Sixteen years of allergy shots ensued, two major sinus surgeries, years of antibiotics and months of acupuncture to remedy major sinus headaches by the age of 20. I married at 23 right out of college (I am a female by the way), had two daughters before the age of thirty and after the second child, I began to have allergic responses to chemicals in lawn products, cleaners and paints, etc. at times, my body ached so bad accompanied by chills and shaking. At the age of 34, I was diagnosed with NonCFBronchiectasis in the lower right lobe of my lung. Two years of rotating antibiotics the first seven days of each month began, respiratory therapy, diet and exercise. Experts thought that I would be on oxygen by age forty but I have not needed that thus far. The Bronchiecatasis has spread to my lower left lobe and my allergies to my environment and food have exploded. Therefore, each day my body fights environmental sensitivities, extreme allergies which requires two shots per week and Bronchiectasis. Couple all that with GERD, prediabetes from a gestational diabetic pregnancy and now that has resulted in fatty liver disease at the age of sixty. All this sounds a lot but if you know me, I am an “over comer”. My children are grown, my husband of thirty four years abandoned me at age 55 for someone else, I lost my job due to Covid but I persevere with a strong faith. Bronchiectasis has slowed me down. Fatigue and shortness of breath with occasional yucky mucus get me at times. Extreme weather/environmental changes bother me greatly as well as humidity. Winter gives me some relief. Basically, this is what I have been handed. My insides react and my outside appearance is relatively normal. That was my greatest problem that I appear well and act youthful and I could not convince those around me as to how bad I felt. Depression does set in at times but I just stay in my day and look up. Surrounding myself with a pulmonologist, gastroenterologist, allergist and endocrinologist has been my best effort to stay as stable as possible. Thank you for letting me share my story.

My diagnosis of mild non-CF bronchiectasis was made in early 2018, after my ENT asked if I wanted a CT scan of my chest. I had had a productive cough with yellow-green mucous, since late October of 2016. At the time, I was almost 64 years old. Over exposure to dust and possible mold from handling some old physical therapy charts, plus a year and a half of really wearing myself down, resulted in what I thought at the time, was a really bad case of chronic bronchitis. Bedrest, sleep and lots of hot tea with lemon and honey and fluids in general , got me back on my feet and back to work after about six days. The mucous was much less, but since then, I have not had a day without coughing and yellow-green mucus. After the initial onset, I sought out my PCP, and an acupuncturist. In late 2016, my PCP then referred me to my first specialist, an allergist. I had the basic allergy tests on two different occasions. All tests were negative. A computer pulmonary function test showed my expiratory volume to be about 70%. The allergist then put me on Breo. I still couldn't sit through a movie without coughing. The allergist's office set me up with an appointment with a pulmonologist in May 2017. The pulmonologist didn't give me the time of day and just said to try the Breo again for 6 weeks. I got him to give me an order for an acapella, which I got. I had another appointment with the allergist in late July 2017. He thought I'm just more sensitive to irritants and that my lungs tend to produce more mucus. I had mild COPD and I just had to deal with it, and otherwise I was healthy. Meanwhile I was also trying castor oil packs on my chest, practicing Spring Forest Qigong and doing lots of breathing exercises. I started with my Integrative Medicine doctor in January of 2018. She had me tested on possible food allergies, etc. Then my ENT doctor suggested I get the CT of my chest, which as mentioned earlier, which diagnosed my mild non-CF bronchiectasis. The ENT doctor suggested I start taking Musinex and Singular. In February after getting a head cold, which increased the mucus, my PCP suggested I try a nebulizer using Albuterol Sulfate/Ipratropium Bromide. I've been using the nebulizer with the meds, twice a day ever since. After a later 2018 appointment with the ENT doctor, he asked if I would like to see a pulmonologist. I finally ended up with pulmonologist who listened and while not having all the answers, is paying attention and definitely a part of my team!! I had never had any sputum tests taken, so we did that (nothing unusual), We checked my alpha-1 Antitrypsin Deficiency Test, again-negative. I started also nebulizing with 3% hypertonic Saline... I have never been hospitalized or had any severe exacerbations. When I have gotten sick during these past 4 1/2 years (note: about 4 times and not sick at all during the pandemic) i.e. had a bad head cold or more notable chest congestion, I have taken a steroid dose pack and azithromycin, which have always helped. I've been retired since February of 2020 (by design) and been very fortunate to be able to concentrate on taking really good care of myself. But the daily coughing and mucus production interfere. I still can't sit for any length of time without starting to cough. I wonder about future travel. I manage things well at home. I can do my nebulizing, coughing, huffing, postural drainage positions (4 -5) and lots of breathing exercises... But how do I manage this when I want to travel, and especially post Covid with a chronic productive cough? I really appreciate this platform and continue to learn from others and hope my story might be helpful to someone! Thanks!

I was only diagnosed with Bronchiectasis when I was in my 40's which was in 2006 as I am now 58 years old. But I have suffered from this condition since I was 3 months old as I stopped breathing and the specialist, I was under that finally made the diagnosis believed that's what caused damage to my airways. The symptoms I get is I wheeze and rattle and have breathlessness every day of my life and I have a very wet cough, I produce an endless supply of mucus it is never ending. It has impacted my life tremendously not to be normal. Prednisone has been both a godsend and a devil drug. I have been taking it for 40 years and it has caused a lot of side effects like high blood pressure, diabetes and because I had to take it when I was pregnant, I believe it has affected my children's brain chemicals by the way of mental illness and not sleeping. I am in Australia.

Michelle,

Hello! Welcome to the community. I am sorry to read about your long journey to the right diagnosis. However, I am glad that you have the right diagnosis and can go forward, seeking the right treatment protocol.

Do you have high confidence in your pulmonologist? Is he / she well experienced w Bronchiectasis?Have you been seen by an Ear Noseand Throat doctor?

Are you doing Airway Clearance everyday?

Being on prednisone long term presents multiple issues.

I am also sorry about the challenges that your children are facing secondary to your medical challenges.

I look forward to your response.

I had tuberculosis 4 years ago. Diagnosing bronchiectasis was immediate on completion of the TB treatment, but the damage had probably occurred over several years before diagnosing TB.

Dawn Ellen,

I am sorry to read about your TB diagnosis. What symptoms were you experiencing at that time?

Dawn Ellen,

That must have been such a frightening experience for you. I am glad that you finally were able to receive the diagnosis and treatment you needed.

I had a cough for almost a year. When it became productive, I knew we needed to do something! My primary care doctor looked through my records and noted that a chest CT I had several years ago (for chest pain, which thankfully was just a strained muscle) mentioned bronchiectasis! He gave me an antibiotic, because the sputum was dark and recommended a prescription antacid, because he felt I had reflux. which I had no symptoms of. I already had a pulmonologist, with whom I checked in about this. I have had asthma for 30+ years, usually controlled by allergy meds, inhalers, only needing prednisone about once a year. He feels this new diagnosis resulted from the years of asthma. I did online research and found out about percussion vests, and their office was glad to approve that for me. So I use my percussion vest twice a day. Lately my pulmonologist recommended albuterol by nebulizer while using the vest. I haven't had an episode of dark mucus since that first one. I do cough, of course. but at least now I know why and that it's a good thing when it's productive!

Martha,

Hello! Symptoms of different respiratory conditions overlap. More education and awareness is now being done on Bronchiectasis. I am glad that you now have the right diagnosis and will be treated properly. It is good that you have the vest and bronchodilators routine in place. There is alot of great information on Bronchiectasis in the menu above. Education empowers a patient to get the best care and to move forward. Katie

Below is a booklet on Bronchiectasis: https://www.bronchiectasisandntminitiative.org/Portals/0/Files/All_About_Bronchiectasis.pdf