← Return to Starting MAC treatment with "big three" drugs: What to expect?

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@rits

Kelly posted on the two fb ntm support groups prior to starting her own group. I know her videos where she demonstrates airway clearance, postural drainage, etc are very helpful to newbies. She lives in Denver so has the advantage of NJH for all her pulmonary care. She does share her personal info re for example her disabled daughter (deaf if I remember right), fireman husband and the fact that she is a doctoral candidate. Some in support groups share personal info and some don't. This shouldn't be an issue.

I didn't read many if her posts on those fb pages or follow her to her own group because she believes that one can avoid a MAC infection by taking what I consider draconian steps . I believe that ntm's are everywhere and there is no way to completely avoid inhaling some. That being said I will never sit in a whirlpool again (very sad) for example and I continue to rigorously do my nebbing and airway clearance 2x a day every day although it is very uncomfortable due to the state of my lungs and it takes over an hour each time.

There are other things I do to try to keep MAC gone from my sputum samples as it has been gone a while now. Everyone must decide what to do while living with this chronic disease. That is a personal decision.

Many people agree with Kelly and appreciate and follow the advice she gives. She has devoted a great deal of her time over the years researching and sharing. It is not a cult. It is a fb support group for those who find the group useful.

Just like this group.

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Replies to "Kelly posted on the two fb ntm support groups prior to starting her own group. I..."

@rits I also share these same thoughts about the group and Kelly. I give her so much credit for the time she takes to share her information and knowledge and am so happy that she has been able to keep herself infection free for so many years. I also know that because of my own diagnosis her methods won't be able to keep me well and I will need a resection of my right middle lobe. I do however, follow her Airway Clearance recommendations and many of the easily avoidable precautions that she recommends. My doctor at NJH says that my bronchiectasis is mild in the other areas I have it and will probably be able to go down to nebulizing once a day once I have that lobe resected but I think I will be always stick to the twice a day in an abundance of caution.

Could you share a link (or name) for these FB NTM groups? Thanks