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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Jul 5 5:46pm | Replies (9359)Comment receiving replies
Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen
Replies to "Hello, I have been reading through these posts for the past several weeks and have learned..."
I second that opinion, Paula! By reading other's posts on this forum and then reading Beating Bronchiectasis, also touting the benefits of exercise, I hopped on the bandwagon. I was already working out with a trainer twice a week but had to stop from last Nov through Feb of this year when my MAC was so bad. Once I was on my meds for a couple of months and felt I could breathe again, I went back to the gym but also joined the YMCA - completely paid for by Medicare's Silver Sneakers program, and now I'm incorporating yoga and some other classes. The yoga has benefitted me tremendously. I do a therapeutic yoga class so nothing strenuous. It's not only helping me breathe better, but helping balance and strength too. I highly recommend yoga or pilates or any kind of movement. It works! Linda
Does Medicare pay for silver sneakers or is it your supplemental insurance? Thx.
It's a benefit of Medicare. Here is the link: https://www.silversneakers.com/. There is a box in the upper right corner of the screen that allows you to check your eligibility. Linda
Exercise is essential. Glad you are doing it. I did a one hour cardio class
and a 4 mile bike ride yesterday. Was pretty beat last night for it, but know
that it is good for me.
Hi Linda, is your Silver Sneakers program an actual class with a
teacher? Mine is, but I have heard that some Silver Sneakers is just free gym
membership. I had to pay for a gym membership in order to use the Silver
Sneakers program because I am under 65 yrs of age. (well worth the price)
Doesn't seem fair to be on disability for the rest of my life and cannot benefit
from senior programs. I cannot even buy secondary insurance!
I still recommend one I've posted a few times before: http://www.ntminfo.org - go to your state then city...how I found mine!
@windwalker, Terri, No I didn't. Nan
@lindam272, @windwalker & others --
RE the benefits of exercise ... 10 years ago when my pulmonolgist told me to start walking and doing Pilates or Yoga each week, I thought he was crazy. I could barely do this '6 minute walk' with a nurse each week I saw him. I was so into 'mental exercise' -- I developed computer software all day -- and now physical exercise? And getting into the 'tight' pants and tops to exercise made me laugh! Hah, not me! Boy did I learn from that! I started slowly at my Employer's employee wellness class with 2 older people (our other co-workers in the class were in their 20s or 30s). We laughed and laughed since it was obvious we struggled, but didn't care. Today I try to take a Pilates and/or Yoga class 5-6 days a week (sometimes both in the same day), and walk each day. It has made a HUGE difference to my lungs (only one lung is working well now) and to my overall well being.
Yippee to @windwalker for doing cardio each week!! What an accomplishment! And it's fabulous that @lindam272 has joined the Y with it's Silver Sneakers. This is the part of managing and getting well having NTM/MAC that doctors' cannot charge an office visit for, or that drugs companies don't get paid for. This is the part we can do for ourselves.
Blessings to all. The benefits of exercise . . . keep moving, as much as each of us is able to do!
Paula
@ginak I hope you can avoid it for awhile. Thankfully so far my Barrett's has not been terribly advanced so all I do for it is take omeprazole (prilosec). The more I read about taking those drugs the more I worry though because they say they can lead to Alzheimer's. I am looking forward to my endoscopy to see what state my esophagus is in now. I am hoping it has somehow improved.
JK
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@windwalker - I don't think many people with NTM or breathing issues fully realize how great are the BENEFITS OF EXERCISE! I sure didn't . . . but came on board pretty quickly after my diagnosis and my pulmonologist's advice about exercise.