Bronchiectasis: New Diagnosis

Hi Barb, a very excellent source of NTM info is
NTMir.org—judy

Thanks for your reply:). I was coughing ridiculously when I finally received my bronchiectasis diagnosis. But it has greatly improved now (thank goodness). I actually coughed only a little bit up at times so I think that is why he ordered the vest. I tried the nebulizer first and it didn't cause much improvement in clearing my lungs so he ordered the vest. It has helped move more stuff out of my lungs, but it is still not a lot. I read the instructions on how to use the Acapella device as it was sent to me in the mail. I am glad to have this alternative but will be anxious to hear about your appt. in Oct. and if it has kept your lungs stable so please provide an update on how that goes. Good luck!

@gej53, Good morning. I have a script for the acapella gadget too, but no clue how or where to get it filled. How did you get yours?

NTM is Non-tubercular Mycobacteria, tuberculosis is a well-known strain of mycobacteria, a slow-growing organism that lives in water, soil and living hosts. MAC is Mycobacterium Aviums Complex, of which there are several strains, is everywhere - soil, water, living organisms.

It is impossible to avoid MAC completely, and most people with normal lungs & immune systems are not affected by it. Bronchiectasis affects the ability of our lungs to clear mucus, the warm wet environment in the lungs then allows MAC and other organisms to grow and cause problems. It is a very slow process, and one may be fine for years until a bout of bronchitis or pneumonia further weakens the immune system and allows the bacteria to become a problem. To further complicate matters, most physicians are slow to recognize what is happening (it is fairly rare) and will continue to treat it as pneumonia with short-term antibiotics, which temporarily knocks down the symptoms...and it becomes a cycle.

This is what happened to me - over 5 years, each cold led to worsening "bronchitis" and a severe asthma exacerbation. The doc treated me, sometimes with 2-3 courses of antibiotics and steroids and I got "better" - never quite back to where I was, but able to go on. Finally, nothing was working, I was coughing 23 hours a day, I could barely move... I was sent for an x-ray and a sharp-eyed radiologist recognized pockets (abcesses) characteristic of MAC. I then had a CT which showed both the (suspected) MAC and bronchiectasis and was referred to a pulmonologist who ordered sputum cultures and I was diagnosed with both MAC and pseudomonas. This resulted in 2 months of treatment for pseudomonas, followed by 18 months of antibiotics for MAC. Now I still have MAC in my sputum (at least I did in December) but I am symptom free, and I use 7% saline nebs (shown to be inhospitable to MAC) and Aerobika for airway clearance to stay healthy. I also walk vigorously every day (or play tag with my grandsons) to challenge my lungs.

This is why lung clearance important if you have bronchiectasis, and there is so much conversation about it in the group. Some people use "huff" coughing alone, some use a "flutter" device like Aerobika or Acapella, some use a percussion vest. Some use a nebulizer with an airway relaxer like albuterol, some use saline. It all depends on whether the less drastic measures allow you to bring up mucus to clear the lungs.

Wow - that turned out to be a long answer to a short question. I hope the information helps those of you who are new to this diagnosis. We who have been "around the block" need to be more diligent about spelling out the acronyms we use, I think.
Sue

@sueinmn- I have learned so much from you about bronchiectasis and MAC. Thank you so much for your clear explanations!

Hi Terri -
I got mine on-line, I think through shopnebulizer.com, but I see Walmart also has it - quite possibly cheaper. I find I prefer the Aerobika because I can use it while I neb (between neb cup & mouthpiece) or separately.
Sue

Bronchiectasis is a lung disease which causes difficulty for normal movement of mucus through our airways. Our bodies send proteins and antibodies to fight the Bronchiectasis which combine with the mucus, forming sputum which gets stuck in our airways. Mycobacteria (MAC) ,as well as other bacteria and fungus love sputum. Flutter devices like the aerobika, percussion vests and nebulized saline help us cough out the sputum.

What is the advantage of using the aerobika with the nebulizer - maybe besides saving time?

I ordered my Aerobika from Amazon. I had a prescrip from my Dr, but I was told my insurance didn’t cover that. So I just searched it on line.

@gej53, Hopefully someone here can advise you about that. My doctor provided me with one. I think your doctor should take responsibility for letting you know where you can get one. If the doctor hasn't, ask!!!