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MAC & Bronchiectasis | Last Active: 4 days ago | Replies (48)Comment receiving replies
Replies to "Thank you Sue! I have a respirologist and he agreed to watchful waiting. I will have..."
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.
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:
You might even want to share it with your provider.
As always, we are here to help and support you and the rest of our members.