No symptoms or health problems

Thank you Sue! I have a respirologist and he agreed to watchful waiting. I will have another CT scan 6 months after our last consult. He has not mentioned saline nebs or airway clearance so I will watch the videos and ask him. (I'm in Canada so protocols may be different.) So glad I found this group!

I too have Bronchiectasis in both lungs and must use airway clearance / drainage to rid my lungs of mucus twice daily. An infection last winter left me with inflammation and I started low dose Azithromycin 3x / week to decrease inflammation. I will be on it for 5-6 months. It seems to be working.

CT scans have shown fairly extensive signs of Bronchiectasis but I don’t have obstruction. I’m told that I have very mild Bronchiectasis. The presentation of the disease varies so much in each individual.

I use NAC to thin mucus, drink a fair amount of water, and do nasal irrigation due to chronic sinusitis. I don’t have MAC or NTM so far. As others have written, I too wear good masks during the winter months in situations where there are large groups of people. We have travelled and I use some protocols to try to prevent infections. Good air circulation is important. I’m careful with the water I drink.

My BE likely started (or progressed quickly ) after infections were not treated properly by family doc. I suffered but was told that there was nothing wrong. No sputum tests were done despite requests and eventually I needed to see an ID doctor. Those infections have cleared.

Thankfully I’ve had no exacerbations for many months and my lung function is normal. I know I’m fortunate with that.

Dealing with mucus clearing is challenging at times. We have to schedule it into our daily lives. It’s not pleasant or easy, but it is necessary and so far it is working. My body can ache as well which might be related to BE? During exacerbations, I was tired, produced more mucus and was very achy among other symptoms.

I keep up-to-date with flu and Covid vaccines. I’ve had the pneumonia vaccine as well.

This site is so informative. Like others, I’m grateful for the sharing and tips. We need to be vigilant and good advocates for ourselves. In an ideal world, more physicians will eventually have this chronic lung condition on their radar. The colour and thickness of mucus coupled with other symptoms should be a red flag for a number of possible respiratory issues.

Perhaps AI assisted and other research will lead to more vaccines and targeted antibiotics to help us deal with this chronic disease. That would be a game-changer for many.

Yes, I can, but in the beginning I was using Albuterol & started out by mixing 3% & 7%. I stopped the Albuterol as I did not think I was getting any benefit from it.

You post is very helpful and I completely agree with all you said. One question, what is NAC? (It sounds like our situations are very similar.)

It is hard to say what Canadian protocols might be, but the experts in the US and Europe agree that 7% saline nebs with airway clearance is one of the most important things you can do while waiting.
Here is a long but excellent video on the topic by Dr Pamela McShane, one of the experts in the field:

I am another one diagnosed “by accident” in the ER with no symptoms (that I was aware of anyway). When the ER doc suggested a chest X-ray I told him there was nothing wrong with my lungs, but understood he had a job to do so ok. I was completely confident the X-ray would be fine. Lol … obviously, it was not. A CT later, then sputum samples, and here we are. Even now, it seems crazy to me that my lungs are so trashed and I have no sense of it. Like others here, my pulmonologist did not raise nebulizing saline with me. He handed me a Aerobika and said “10 breaths, 2x a day”. That was it. While asymptomatic, I have extensive BE, 4 lobes, as well as MAI. From this group and other resources I learned about the full spectrum of airway clearance. I asked for nebulizing saline 7%, he said he normally does 3% (so why didn’t he raise with me in first place?), I insisted on 7%. I asked for a vest. He said “sure”. I also do autogenic drainage finishing with Aerobika. I don’t find any of it very “productive” as I have little to no sputum but was hoping it was improving my mucus impaction. My last CT unfortunately did not show any improvement with mucus impaction (after 3 months of AC), but is stable. So, I persist. Every BE/NTM expert says AC is crucial, and highly recommend saline neb, 7% if tolerable. It’s something I can do for myself, and I am hopeful it will keep me staying asymptomatic for as long as possible. But again, this was mostly initiated by me (with the help of this group!) not my doctor. I will add I had a respiratory therapist from pulmonary rehab tell me I did not need a vest. I wasn’t sick enough. Presumably she said this because I am asymptomatic and still regularly exercise, etc. But that shows that people who don’t understand BE/NTM don’t understand the lung hygiene needs of someone with the condition. My pulmonary rehab program had very little understanding of BE and zero understanding of NTM. Which is such a shame since COPD is also a risk factor for NTM and not surprisingly many in the pulmonary rehab program had COPD. In any event, I just learned I was accepted by NJH, so looking forward to meeting with those who specialize in BE/NTM. Based on my experience, my suggestion is that if your doctors are not BE/NTM specialists, get yourself to a specialist. There are a number of BE/NTM specialty centers that have been certified, I think the current number is 34, and I thought that list would be out by now, maybe others know about it’s status, but these will be a great resource for all of us. They hope to expand the list to 150 (I think I have that number right). There are also going to be standards of care issued later this year (hopefully) that patients can take to their doctors if they cannot access a designated center and say I NEED THIS! So helpful. All to say, we have to do our leg work and get the right resources for our conditions and not assume the confident doctor or nurse sitting across from us is giving us the best information or for that matter even accurate information. Good luck to us all!

There was a recent 1st North American BE/NTM patent symposium at NY-Langone, there should be a link here somewhere, where a Canadian doctor participated. My recollection is that she said in Canada they do not use a lot of nebulized saline and due to cost do not generally use vests. I myself would pay out of pocket for both if need be (though vests are expensive). I recently sent the genetics discussion from the presentation to a geneticist I saw for testing and that was helpful to advance our conversation. You may want to do the same re airway clearance presentations. I do think Dr McShanes’ most recent is very good, the one Sue linked. There are medical supply stores in US that will ship nebulizing equipment without a prescription. I don’t know if they ship to Canada. The one I use based on recommendations from this group is Save Rite Medical out of Brooklyn NY. My insurance covers only the cheapest nebulizer that cannot be sterilized so I now pay out of pocket for my nebulizing equipment, as many in this group do. I think I have read that others have gotten saline online too without a prescription, maybe Amazon? My insurance does cover saline. I am part of an HMO so I know the limitations of managed care. In my experience, it seems like if they won’t pay for it, you won’t be told about it. In general, I have been successful in getting treatments covered after I have researched and learned about them on my own, but only sometimes. I am not familiar with the Canadian health care system but suspect you have similar obstacles. I definitely recommend you try and educate them re saline and AC as that seems like low hanging fruit cost-wise. You may also want to consider paying out of pocket to consult with a BE/NTM specialist in the US, if this is an option both financially and legally, I really have no idea how out of country medical care works though hear of it all the time in the reverse - people in US going to other countries for cheaper medical care. I will see if I can readily find the link for the presentation with the Canadian doctor. You could also try reaching out to her directly and see what resources she can help with as she heard all day at the presentation the importance of airway clearance with saline. I literally think almost every presenter referenced it.

@snoei I’m glad my post was helpful. I learned about NAC through this site.

N-Acetyl-L-Cysteine is an amino acid. I mentioned it to my pulmonologist.
People recommend 600 mg twice a day and I did start with that amount. I’m not sure if it was a coincidence but my blood pressure, which is typically on the low side of very good, got much lower especially the diastolic number.

I just decided to stop taking NAC with supper and now only use the 600 mg with breakfast. I may try it again with supper but I seem to be doing ok with the mucus clearance. I must clear my lungs twice a day.

You can purchase in stores or through Amazon. I buy Natural Factors brand because it has a third party company check on quality. There are many excellent brands.
Hope that helps.

I don’t nebulize with saline. I was told I didn’t need to but I’m planning to bring this up again at my next appointment. I think it would be especially helpful if (when) I experience another exacerbation with an infection.

Sue and others have mentioned that nebulizing helps our lungs ward off NTM infections. Since we may have similar presentations of this disease, I'm curious.. Has your lung specialist mentioned nebulizing saline to you?

Here is the link for the NYU-Langdon Health 1st North American BE/NTM Patient education program. They have nicely edited the presentation into videos for each discrete speaker/topic. The doctor from Canada is Julie Jarand, MD, University of Calgary Cummins School of Medicine, and there is a link for her presentation.
https://players.brightcove.net/3714047748001/experience_676ed37826b6b9879d00f525/share.html