← Return to No symptoms or health problems
DiscussionNo symptoms or health problems
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (29)Comment receiving replies
Replies to "Thank you, Sue! I'm learning so much, and my list of questions for my doctor continues..."
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!