Mayo Clinic Connect
Hello – I happened to stumble upon this group today and glad to join a community with same/similar health challenges. It looks like many posts I've seen are dated … just checking – is this discussion group currently active (August 2020)? Thanks!
@aerogirl Welcome to Mayo Connect! Yes, this site is active. The reason you see older posts is that there is so much information that can be gleaned from previous and invaluable posts. irene5
Liked by Terri Martin, Volunteer Mentor, aerogirl
Excellent … thanks so much for your reply!
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What ails your lungs aerogirl?
Posts are typically arranged oldest-to-newest. To see the most recent posts in a discussion, go to "Last" in the thread. Hope that helps.
MAC/bronchiectesis, diagnosed 2011. Did the 3 drugs routine for 18 months with no success (2015). Currently managing with Aerobika, 7% saline, reducing opps for silent reflux, and lots of aerobic exercise. Feel good, thank goodness! Visited Mayo Scottsdale early on for 2nd opinion, and now go to NJH Denver routinely. How 'bout you?
Hi @aerogirl, I'll add my welcome. While you might be new to Mayo Clinic Connect, I see that you are not new to MAC and Bronchiectesis. This forum was started in 2011 and remains very active to today. You can see the origins of the group and meet most of the members in this discussion
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
As you browse the topics of the MAC group (https://connect.mayoclinic.org/group/mac-bronchiectasis/), I'm confident you'll see your experience with anitbiotics, aerobika, 7% saline, silent reflux, etc echoed by several members. What I know you'll find is a supportive and wel-informed group of people willing to share their experiences to learn, support and discover. Glad to add you to the group.
Tell me more about lots of aerobic exercise. How do you manage to do it? Treadmill or outside walking or? Did you build up time slowly or? I do everything you’re doing. I know I need to do more aerobics.
Aerogirl, if this forum had eligibility requirements I’ll hazard a guess that you’d have’em nailed. Don
Thanks for this info! Appreciate the assist as I orient to this forum.
@woot Regarding aerobic exercise… I've always been active and thankfully, am still able to be. My main activities are riding my bike and walking. I'm totally committed to getting out there because it makes me feel good, mentally and physically! I live in Arizona where the weather cooperates with being outside year round. Yes, begin slowly, and then you get addicted. 🙂
Liked by alleycatkate
@aerogirl Hi there! Welcome to our mac group. I see you live in Arizona. I used to live in Tucson as well as another member in our group. How long have you lived there? I am glad to see you are getting exercise; it is key to improving your health as you know. After being diagnosed w/mac in 2011, have you ever had a negative sputem test since then?
@windwalker We've been in Tucson for 30 years now. Interesting that you used to live here! I have not had a negative sputum since being diagnosed, although the count decreased during treatment quite a bit. I have had a variety of organisms culture out, kind of a mystery, and results change from test to test. "Simiae" is my most recent (& most concerning), and doc following closely to see what happens with next culture. I'm fortunate in that I feel good and really have only minor symptoms. Thanks for reaching out – I am learning a ton, and I already thought I knew a lot!
Liked by Terri Martin, Volunteer Mentor
@aerogirl, I stayed sick for most of the yrs I lived in Tucson. Don't know if you are aware or not, but it is one of the 'hotbeds' for mac. Meaning a higher incidence than some other places. I was dianosed with mac while living in Tucson in 2005, along with Valley Fever. I moved to coastal S.C. in 2012 and started treatment at the Mayo in Jacksonville. I finally regained my health and tested neg for mac since 2014.
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