I have recently been diagnosed with bronchiectasis and MAC. I have an appointment with ID Dr. next week.
My pulmonologist has me nebulizing with Albuterol and 3% saline 3x a day, but I can only handle 2x a day.
Airway Clearance Techniques have never been taught to me so I’m learning from online sources but basically I’m
wearing myself out and it’s not productive. I cough constantly. I mean constantly! And I feel like my esophagus is just raw. I have had these kinds of coughing episodes for decades. They usually last 2 months or so and are usually triggered by allergies or a virus. I used to think these ‘flare ups’ were asthma or "reactive airway disease," (one pulmonologist said it was that) but now I know definitively what it is. My last ‘flare up’ was February 2020. I mean not a cough or sniffle for 3 years. Now, in February 2023 I have this cough and these diagnosis due to finally getting CT scans and lots of testing. Here’s the thing.
In the past, I was never able to use Albuterol inhalers because they instantly irritated and aggravated my constant coughing. This time around with the nebulizing, I cannot stop coughing to save my life. Sometime I am able to cough up sputum, sometimes it just seems like my airways are irritated and raw and the cough is just on an automatic cough loop. My chest is beginning to hurt. Is this kind of coughing normal? I'm getting very depressed with the idea that I may be coughing every minute of every day for the rest of my life.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I'm not a doctor, but this coughing sounds super excessive. Have you tried nebulizing just once a day? This might give things a chance to calm down.
Thanks, @miloandlisa Yes, I definitely have thought about it. In fact, last week I stopped for a few days and felt better but then reading how important it is to neb and clear lungs I felt I should start again. I'm wondering if there are other neb meds that won't irritate like Albuterol. I'm pretty overwhelmed so I don't know if I'm just blaming Albuterol for all this coughing or what. It's crazy how this new diagnosis has just completely taken over my whole life. At least that's how it feels.
I don't think I have ever coughed constantly, but I have definitely coughed long enough and hard enough hurt myself – pulling muscles etc. And I have felt the emotions of feeling like pieces of my life are no longer available because of the coughing and the time it takes to do the treatments. It's a lot and I'm sure all of us have been there to some degree. It takes time to adjust to the new routines and requirements of this diagnosis. This forum has been a Godsend for me. You came to the right place.
@pled Thank you. You just made me cry. In a good way.
I cried when I wrote it. From my heart to yours!
Oh, how I can relate! 5 years ago, I went to the doctor for exactly the same reason. And with the same old, tired diagnosis – "intractable asthma and reactive airway disease with bronchitis…"
This had been going on for… years. Only massive doses of prednisone helped, and we knew this could not continue.
First let's address "…I was never able to use Albuterol inhalers because they instantly irritated and aggravated my constant coughing…" Many years ago, before it was available as a generic, I had to switch from albuterol to levalbuterol – I could not tolerate the raw throat or the shakiness. Now that levalbuterol is available as a generic, there is no reason to tolerate albuterol.
So I returned home ill from my winter getaway – another lung x-ray – and a sharp-eyed radiologist said the magic words "evidence of bronchiectasis, nodules and opacities." Off to a CT scan & a pulmonologist – with the diagnosis of Bronchiectasis and probable MAC. Interim treatment – start airway clearance with Acapella & albuterol (he didn't know about the value of saline)Then a sputum culture and a wait – he said it would be 6-8 weeks, but in 2 weeks he called & said "Pseudomonas" – which started 2 months of antibiotics until we hit the one that worked. In the meantime I coughed and coughed.
Then came the diagnosis of MAC, and as soon as the Pseudomonas was gone, I began the Big 3… and coughed and coughed.
I too felt "…sometimes it just seems like my airways are irritated and raw and the cough is just on an automatic cough loop…" Then I found Mayo Connect and realized there was more to airway clearance. I read and read. And watched videos about airway clearance.
I learned to take a good drink of water and start with some controlled breathing, which seemed to calm the cough.
Then without any neb, I would use the Acapella device. At first, I would immediately begin to cough.
Stop, sip water, deep breaths, Acapella again. Repeat – for up to 15 minutes. Then STOP.
It took 2 -3 sessions like this before I could successfully make it through 3 Acapella breaths and one huff cough.
Eventually I was able to make it through 5 or 6 cycles of clearance. A little sputum would come. But I realized I was accomplishing "something" because later in the day, LOTS of junk would come up out of my lungs when I coughed – especially after walking or bending over.
Next, I began using 2 puffs of my levalbuterol inhaler 10-20 minutes before airway clearance, and taking a short brisk walk. Wow – better results!
Finally, I added saline – but only .9% – my doc wouldn't go for anything else – and it really helped.
This took quite a few months to progress, during which I switched to an Aerobika PEP device, began to use the levalbuterol neb once a day and was taking the 3 antibiotics.
My story eventually has a "happy ending" – off antibiotics for over 3 years, still doing airway clearance and no relapse.
I hope this gives you hope, that you can get through this. This entire group is always here to answer questions and offer encouragement!
@sueinmn WOW, what a journey. Thank you so much for sharing your experience. Not only does it give me hope it gives me valuable information so that I can advocate for myself with my doctors. I pray that the new ID Dr I am seeing this week will be a little more communicative than my pulmonologist. Frankly, I think my pulmonologist is pretty disengaged. Again, thank you so much.
My ID doc referred me to a new pulmonologist with more current thinking, maybe yours can too.
Remember, this is a "rare" disease – even pulmonologists see it seldom compared to asthma, emphysema and COPD.
Hi @sadair20 — I can see why you are frustrated and worn out. I coughed constantly for 30 years. In 2008 a CT identified 50+ nodules in both lungs — slowly growing. A mystery, but most doctors guessed it was something benign. Finally, in 2020 I had a lung biopsy and was diagnosed with DIPNECH (very rare — only 200 documented cases) and typical carcinoids (rare slow growing lung cancer – only 1-2% of lung cancer cases). People with DIPNECH usually have a long history of unexplained coughing and shortness of breath as I did. I also coughed up clear mucous all day long. Everyone knew me as a chronic cougher. Inhalers made it worse. I was very sensitive to scented products — big trigger. Almost everyone wears something scented, plus candles, air fresheners, etc. I felt allergic to people and crowds. I've been taking octreotide injections for two years and I have minimal coughing since about 2-3 months after starting treatment. It has been life changing!!!
I had to look up MAC. From what I read, it's an infection and is treated with long term antibiotics. Although we have different disorders, I can certainly empathize with you. My hope for you is that the antibiotic treatment will greatly improve your coughing — hopefully sooner rather than later. My heart goes out to you.
@californiazebra Thanks for your reply. I am so happy to hear your octreotide injections are doing the trick for you! That's amazing. I can't wait to see my new ID Dr. to get some answers and some kind of treatment. Also, learning about airway clearance techniques online shouldn't be what a person has to do . I'm going to let my pulmonologist know how disappointed I am with his ability to educate me about anything! (another giant frustration!)