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Posts (27)

Dec 5, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Kathryn, I’ve found that any dust flying around or even working outside blowing out the leaves or things like that affects me, too. I just bought electrostatic filters. They are suppose to reduce the amount of dust. There are even stronger filters but they can be hard on your HVAC system. That’s what my HVAC guy told me. I don’t cough anything up – never have. They had to do a bronchoscopy to get a sample. It’s so nice to hear that that this time of year brings you such joy. It certainly made me feel great just reading it! Amazing what a smile can do to brighten your day. Such a simple thing but so powerful. Thanks for giving me that! Janet

Dec 5, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Katherine! Sounds like another one to try. That’s exactly what I’m aiming for – cough up all that crud! And if I can up my lung capacity at the same time that will be a bonus. 🙂 We learn so much from you!! Thx, Janet

Dec 5, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Bruce,
I go to a clinic at UNC in Chapel Hill called the UNC Center for Bronchiectasis Care. They treat Bronchiectasis and any NTM’s such as MAC. I’ve only been there twice but I’m very happy with the care I’m getting. I went to Duke before that but wasn’t comfortable with the treatment I was getting. I don’t know what kind of doctor you are seeing but it should be an infectious disease specialist and pulmonologist. Everybody is at different stages with the disease so as Katherine has said you have to do your homework to decide whether you feel comfortable with what your doctor is suggesting for treatment. Not every Dr. has a lot of knowledge about MAC. I think some of the people on this forum know more than some of the Dr’s I’ve seen! I appear to have a mild case of MAC and Bronchiectasis so at this stage I’m just being watched and I’m doing lung clearance exercises to breakup and get out some of the MAC. I see my Dr every 3 months and have a lung function test at each appt. If my symptoms change – I will have to go on to plan B. But, so far so good. Do lots of research, find a Dr. you trust that has dealt with this a lot and that will monitor you closely. We’re all here to answer any questions or offer advice. How awful that both of you have it. I wonder how often that happens. Good luck. I hope you get good news at your appt. Janet

Nov 20, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Everyone,
I just wanted you to know there is a clinic at UNC (University of NC) called the UNC Center for Bronchiectasis Care. For those of you that have Bronch. and an NTM and are looking for Drs. knowledgeable in this field this might be a resource. I know how few and far between these clinics are across the US. They don’t just treat Bronch., they treat any NTM you may have. I’ve been there twice. I wanted to wait until I’d gone a couple times before I said anything. Both experiences were very good. I found my doctor to be very knowledgeable, she took the time to explain her game plan, why she was doing it that way and asked me if I was comfortable with doing it that way. She spent quite a bit of time with me each visit going over test results, answering questions. I also found the staff to be just as helpful and willing to spend time going over everything. The respiratory therapist gave me her card and told me a couple ways to get a hold of her if I had further questions after I left. Nice! Overall very, very nice. Much better than my experience at Duke. They are located in Chapel Hill, NC. Let me know if you have any questions. Janet

Nov 20, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Katherine, I bought my Aerobika on Amazon but I just looked out there now and it’s showing as not available at this time. I’ve never tried the Acapella so I’m no help there. As for the home remodel? LOTS of fun. But like a vacation – I’ll be glad to get home when it’s over. 🙂 Hugs back, Janet

Nov 18, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Katherine and all,
I don’t know if I’m a great one to talk about the Aerobika but here goes. I started using it a couple months ago. My pulm. Dr told me to get one and I did and followed the YouTube instructions on how to use it. I was supposed to use it twice a day but (making excuses here) with some traveling and putting one house on the market and remodeling the new one I haven’t been the best. I have a mild case of Bronch and Mac and I don’t always cough and I never cough up anything. The only change I have noticed so far is when I lay down on my back I don’t have a coughing fit like I use to. At my appt this week I met with a respiratory therapist to show her how I was using it and she corrected some things. I’ll see if that makes further improvements along with using it regularly. Since I don’t have a serious case I may not be the best person to make a recommendation. I will see how it goes over the next three months. I’m having a CT scan at that point and will hopefully see if there’s been any changes for the better. I’ll let you know.
Janet

Nov 11, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Great news Katherine! I haven’t written in awhile so here goes. I left my pulm. Dr at Duke. You would think they would be good, right? It’s Duke! But, as we know there are many docs out there that just aren’t well informed and you have all educated me so well I can tell when someone knows what they are talking about. Met with new Dr. at UNC Center for Bronchiectasis Care where they treat not only bronch. but MAC as well (which I have). I have a mild case with only mild symptoms – no appetite, mild weight loss, mild fatigue (not sure if that’s the MAC or my lifestyle!). My doctor is holding off on drug treatment for now but I am using an Aerobika to help me break up some of the mucus and she said that can actually reduce the amount of MAC in my system. I have to go in every 3 months for lung function tests – if there’s a 10% decrease in my lung function we rethink the game plan. I also have a six month ct scan or chest xray. If it’s stable I can go yearly. I see her again next week but I think the appts with her do the same thing. 3mths, if stable go to 6 mths and then to a yearly. If I have a cold/respiratory issue I have to come in with a sputum sample which so far I haven’t been able to do. I don’t cough anything up – never have. So far I feel comfortable with her other than her saying that I’m contagious to people that are undergoing chemo. I know I asked you about that Katherine. That was in a writeup she gave me to read after my last appt. I’m going to ask her about that next week as I haven’t read that anywhere else. So, I’m very skeptical about that. Overall, I feel great. I wish I could send that healthy energy to those of you that struggle so much. Instead, I’m sending you good thoughts and wishes that you will have better days ahead. Janet

Sep 19, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Paula, thanks. I hadn’t read anything before about it being contagious under any circumstances so that really threw me. I’m going to go with what I’ve heard/read/am hearing now. Which is that it isn’t contagious – period. Janet