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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you've seen have you trying to cough up sputum 'on demand'! Very difficult to do, unless you are in the heavy throws of MAC.
Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I'd like to see these docs get in the practice of telling patients about several exercises they can do -- not the aerobics type that aren't so recommended when you get 'older', but exercises that are sustaining for a lifetime -- Pilates, Yoga, etc. In past years, I'd cough and cough when I did Pilates and I've just told my instructor it's good that I'm coughing, means I'm opening up my lungs. This winter I have hardly coughed . . . wonder if it's because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren't used to this type of exercise.
Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I'm in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!
Replies to "Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you..."
Hi Paula,
Yes I agree. What makes it worse is that they would not accept my sputum that I cough up on my own first thing in the morning. When I went in yesterday to the Army hospital to produce their third requested sample, I brought a sputum sample with me coughed up just an hour before (in a sterile cup given to me from UNC) that they would not accept. So I endured another twenty minutes of deep breathing of the saline solution and coughing in the watchful eyes of the technician... I was terrified to see that I began coughing up bright red patches of bloody sputum....
My lungs were burning and my ribs have been hurting so bad from the forced coughing at WAMC (in addition to my regular coughing) plus the two breathing tests. I told the Army technician that I do not trust them for making me go through the forced/induced sputum tests three days in a row and not accepting my first morning sputum cultures for sampling (she just raised an eyebrow).
One more thing, in review of my UNC visit notes, the doctored changed by diagnosis from MAC to Mycobacterium avium-intracellulare infection... A different species of M. avium... I will gather more clarity on this as time passes.
May the Force be with YOU all.
Melissa
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Hi Paula,
You are so right .. that darn Kettle Ball really irritated a nerve in my back. But the result is that I now better understand why I had such bad back pain with all my coughing. I really thought it was damage to my SI joint.
Last week I went to an Ortho Doctor .. he took an Xray .. put me on a "Medrol" steroid 6 day pack to calm down the inflammation .. it GREATLY relieved the pain. Then today the 1st day of physical therapy .. she was really great! Gave me 2 pages of lower back exercises to do daily. Turns out it is NOT SI .. it is the usual L4-L5 lower back issues. Basically part of the aging process I think!
BUT by strengthening the muscles around the spine it will better support the spine and I fully expect the pain to improve. By wearing my SI belt my pain level was VERY bearable prior to my experience with the Kettle Ball. She also encouraged me to get back to my exercise routine of Nordic Track and yoga in addition to these lower back exercises
Paula, I agree with you .. I am sure I have been coughing more because I have not been exercising due to the back pain .. I am back to joining you with the exercise!. Let's forge forward toward healthy living!