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Bronchiectasis & Possible MAC – Dealing with the Cough
I am excited to see posts about this subject. My pulmonologist feels based on symptoms and MANY CT scans over the years I have MAC. I was VERY ill from 2006-2012 with pneumonia every 6 months, and one year I had it 4 times. It was awful and those bouts caused scarring.
I don't get pneumonia any longer, thankfully, but the bronchiectasis is worsening. I am in the process now of getting a pulmonary function test done, had a new CT done, etc. I have multiple ground glass nodules, progressive thickening of the airways, and "plugging." A "bronch" didn't identify MAC, unfortunately. We are going to do sputum tests.
Over the years I have learned to roll with this but my cough gets to me, it's every single day. I can't lie down, eat, or go into cold weather without hacking my head off. Anyone else?
I hope I have some treatment options, has anyone else had a similar experience but found ways to feel better? I need to go to the dentist but the cough is out of control once I lie back.
I am wearing down, the cough is tiring.
Thank you!
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@mwolf Welcome to Mayo Connect - We have a wonderful community of members living day by day with Bronchiectasis & MAC - you can meet us here :
https://connect.mayoclinic.org/group/mac-bronchiectasis/
Just click on any discussion that looks interesting, begin reading, and when you find a place where you would like to comment or ask a question, click "Reply" and let us know what you are thinking.
I have been a member here for over four years, learned a great deal about living with this chronic condition, and gotten a lot of good information about how to live my best life.
Like you, I was undiagnosed for many years, then spent about 2 years on antibiotics. Now I have found a way to live, with asthma medications, 7% saline nebs, and daily airway clearance, but minus the MAC and the cough...
what kind of treatments are you doing while you await findings of whether you have MAC?
Sue
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2 ReactionsThank you so much! It's been such a long road! I will get an occasional "flare" and it goes away. I use a Ventolin inhaler as needed. I had a bout in August that was just like the old days, night sweats, body aches, lungs hurt, low grade fever, etc. For that I did a course of Azithromycin.
Recently, I am needing the inhaler more and the cough is increasing. That prompted me to contact my pulmonologist. It's encouraging to read that improvement is possible!!
Thank you for responding!!
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1 ReactionSue’s welcome is the voice of this forum…you are well connected now to persons like yourself…and yes “wearing down” is a theme repeated here…however, sounds like you are a fighter…and have a positive attitude…very necessary.
Be your strongest advocate, in plain language, you direct your plan of healing, your path to best quality of life…with the help of professionals. Find the best “specialist “ you can afford and access. Appears you have a relationship with a pulmonologist; have him include an “infectious disease doctor” with experience in PD(pulmonary disease). Don’t wait, it is your days, months, years, transpiring. You most definitely need the sputum results for an accurate diagnosis…Sue can give you the specifics on what to insist on(counts/sensitivity/etc).
There is a variety of treatment modes that can help in the meantime…push your doctors to offer them (airway clearance, nebulizing saline, devices). Educate yourself on best practices for self care…exercise, diet, sleep.
And again, recruit the BEST TEAM of experts you can find…because you are the one who has well-being at risk here and time vanishes.
You have found a community of caring individuals who can understand and commiserate your pain….ask questions.
Stay strong.
Regina
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11 ReactionsI am sorry about symptoms including cough and being uncomfortable. Its not fun.
Not sure if you have seen immunologist. It would be good idea to check IGGs. There are primary immunodeficiencies that lead to multiple respiratory infections. Some people's immune system also doesn't mount antibodies from pneumococal vaccine and that can be the reason of getting PNAs frequently. Immunology MD can run qute a few tests due to frequent infections. Hopefully it can shed the light to root cause of why 🙂 😀
I have done the above, at least I know why I keep getting sick 😫 so frequently
Sue, what does 7% saline nebs do and how do you do daily airway clearance?
I do albuterol and atrovent nebs when asthma flares.
I am somewhat new to asthma. was dx 2 years ago after 1.5 year of being sick, I am on maintenance asthma medication.
The best way to describe airway clearance is to show you one technique. You can see it here:
When lungs are damaged or scarred by repeated infections or a disease like bronchiectasis or COPD, mucus that usually clears with breathing and normal coughing gets "stuck" and airway clearance helps move it out so it does not become a breeding ground for infections. 7% saline nebs have 2 purposes for those of us with bronchiectasis - it thins the mucus, making it easier to expel, and at that strength it suppresses growth of our nemesis, MAC infection. (Mycobacterium avium complex - slow-growing bacteria that are in our air, water & soil. If they get a strong hold on our lungs, lengthy, unpleasant courses of 3 or more antibiotics are needed.)
As a person with long-term asthma plus bronchiectasis, I find airway clearance helps keep me healthy.
Have you had asthma for a long time? How much impact does it have on your day to day life?
Sue
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3 ReactionsThank you Sue.
I got sick with Fungal pna in May 2019, was treated, but cough never went away, was dx Asthma in nov 2020. It's been hard to be compliant mentally with maintenance medication, but getting oral steroids and abx each 4-5 times per year, made the point that I need to stay on maintenance medication. Its still hard to keep up with Maintenance medication regime when I feel OK, but then suddenly I don't feel ok, I do regret not taking medication. Now it's the fear of not being able to breathe keeps me going 🙃 with daily meds.
My lung nodule from funagl pna is now in "sleeping" /scarring mode per pulmonary MD. I will watch the video ! Thanks 😊
I have a really good pulmonologist, thankfully. I meet with her this week and I will find out more about my recent CT scan, future action, etc.
I appreciate your thoughtful post, and you are right, time vanishes way too fast!!
I am thankful to communicate with people that understand.
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