‘‘Twas the Night Before Christmas”

Cavlover, Without straining I just fill my lungs until my chest has comfortably expanded. It usually takes about 20 - 25 minutes for the saline “cloud” generated by the machine to approach insignificance. Don

It all depends on what I'm reading in the paper! My neb takes 8-10 minutes - once I really start coughing stuff up, I quit, even if there is a little left in the cup. Then another 5-10 minutes of coughing. I use my inhaler 10 minutes or more before I neb.
Sue

Thanks to Jennifer for raising all of these questions and providing us with more learning opportunities. I hope that Jennifer gets all of her questions answered. It is so stressful to find your way when you are diagnosed with bronchiectasis and Mac and this group has been a lifesaver for many of us.

I have another question for those who have shared information about other medical challenges: Do you think that these are coincidental or a result of (or in some way connected to) Mac? I seem to have become a regular at my doctor’s office and sometimes feel like I should add hypochondriac to my list of ailments.

Happy New Year to everyone and many thanks for being a continuing source of information and support!

Kathyhg ...about your question regarding other medical challenges...I too have felt like a hypochondriac!! I would joke in the voice of RosaAnnRodannazanna and read off my litany of afflictions. I know that my hiatal hernia and gerd are related to the bronch and Mac for certain, but the heart rhythm problems, sleep apnea, allergies, arthritis and glaucoma I’m not too sure of. I just think it’s my physical machine parts (body) wearing out. I don’t know why my mother never told me about this!!! Ha ha ha. I do think that certain stressors in our lives cause certain weaknesses to flare up. My divorce caused me to experience broken heart syndrome. It quite literally felt like my heart was being ripped in two and I thought I was dying at the time the pain was so bad. After that is when I started to experience my atrial fibrillation and sleep apnea. Also some things are hereditary, like the hiatal hernia and allergies. Several members of my family have those conditions.
I do think there’s something to the ayervedic body types and medical proclivities that go along with each. In the end, it really doesn’t matter. We just have to come to terms with our individual situations and take care of ourselves as best we can.
This group of Mayo connect has been a source of inspiration, guidance and humor for all of us and I am grateful to have found it.
I hope that 2021 is a better and more hopeful year for all of us.

Thank you! At first, I worry that I’m not doing things right, but once I get in the swing of things, I feel more confident. The routine takes time, but it’s worth it if it’s clearing my lungs. I went for my first appointment since diagnosis. I asked about MAC and NTM, and he said that he didn’t need a sputum sample as it didn’t show on my CT. Even if It did show, it’s not like he’d change anything. If I were to get sick, he’d prescribe antibiotics. I’m not sure even then that he’d get a sputum sample first before prescribing any meds. But wouldn’t he need to do a sputum sample to know what meds to prescribe? Anyway in 6 months I’ll get another PFT.
I guess I can’t worry about what might be because worrying doesn’t help. It somehow makes me feel like I have control and I don’t.

Yes I sometimes read everyone’s message there saying and I have to think wow should I call my dr and ask him why is he giving me the medicine he gave me and not all the other stuff I’m reading that people are in for MAC I wonder why I’m on this and others are in different meds I’m still wondering that

jr2366 Jennifer. My doc put me on Arikayce alone. The reason being I cannot take the big 3 because of my heart rhythm problems and also because I had some serious allergies to some of the medications. There is also the cross reaction to heart meds. Just thought I’d chime in and point to some reasons why the Arikayce is prescribed by itself.

@sounder27 That is interesting and certainly understandable. Being part of an Arikayce clinical trial requires me to be able to tolerate two of the three Big 3 meds. I am guessing you are not in the clinical trial of Arikayce?? I did not know there was any other option based on the approval status of that medication. Good to know! irene5

Can I ask you how long your on Arikayce and how are you feeling I need someone eles also to compare notes with if you wouldn’t mind I’ve been on it for 14 days now

Jr2366 I’ve been taking the Arikayce for just over a year. As I mentioned I did loose my voice and had to adjust accordingly for awhile. I am due for a sputum check but I have a hard time getting mucus up. It may take awhile before I can produce a sample. The voice thing was my only negative reaction. I’ve just gotten used to the routine of using the Aricayce.