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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
Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!
Replies to "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..."
@unicorn Hi Crista. Wondering what your current status is.
Where are you at in terms of your meds and seeing a good dr? Don't mean to
be so personal, just worry about you. You may have posted something more recent,
but I sometimes miss e-mails because I have a bunch. I know in the past you were
going on and off your antibiotics. I hope you are doing ok. hugs - Terri
M.
Hi Terri: No more meds. back on meds for one week, but body rejected, can't tolerate, in bathroom all the time. So now I know, have to use mucous clearance instead. Swimming a lot and using nebulizer every day. I actually feel pretty good! I'm not as scared after being on this site. Thanks you. xo
@unicorn, So glad you're here Christa .. keep us posted! BUT keep in mind those darn mycobacteria critters do NOT run away .. keep up with your check ups with a GOOD Infectious Disease doctor .. we're here for you! Hugs to you! Katherine
@irene5 Hi
Irene. I am just catching up on old posts. Are you still feeling like you have
very little quality of life? I am concerned about you. - Terri M.
You are kind to ask. I am grateful for every day Terri. I pick one goal for each day. Losing my independence has been the hardest thing for me and for my family because MAC has been very debilitating for me. I don't like asking for help, but I am aware of my limitations. Having ten children (six are special friends from China) and almost thirteen grand babies now is a wonderful blessing. The change in my role from super mom and teacher to "this" has been especially challenging for my family. I'm real good from the neck up! 🙂
@irene5 Hi Irene. That is smart to set one goal a day. I do the same.
Some days I give myself permission to just lay low and do very little. Sometimes
that feels good when you have a very bad fatigue day. Thankfully my hubby took
over all food shopping and food prep. Also grateful that he enjoys it. You must
have tons of joy with all of those kids and grandkids. My niece and her two
young ones were just here to visit me for the weekend. We went to the pool, a
boat ride w/swimming, to the beach, more pool and late movie. All of that in 2
1/2 days; in extreme heat and humidity. I am STILL recovering from all of
that. I made myself do these things because I rarely see
them. There are so many wonderful people on this
thread; I wish we could all get together in person as a support group. It would
be nice to actually see and visit with each other. I know we can't, but a lovely
thought. Hang in there Irene and enjoy the love all around you. -Terri
M.
Yes, it would be awesome to meet everyone! In the meantime this is a wonderful "connection!" Thank you Terri!
@irene5, Irene, so interesting "The change in my role from super mom and teacher to “this” has been especially challenging for my family." .. I think that has been SO true for many of us .. AND difficult for our families. So many of us NEVER let our vulnerable sides show .. ALWAYS the Super Woman .. AND I think it is a bit frightening to those around us .. frankly they do NOT want that change .. they prefer we ALWAYS be who we always were. I JUST had that conversation with my 22 year old beloved granddaughter visiting from the East Coast after college graduation last night. We discussed her childhood .. my vital role in who she feels she is today as a strong woman .. BUT also with my aging and her fear of it .. her fear of my death .. her fear that I will not always be here. We discussed the "cycle of life" but truthfully she was NOT into that .. you Irene are REALLY dealing with this aspect with the numbers in your family. I can truly relate to the emotional aspects of this journey you are on. Keep coming back .. we are here for you on the tough journey. Hugs to you! Katherine
Thank you Katherine! Yes we have all had "the talk." Interestingly my Chinese daughters are having more anxiety about it all than our biological children. We adopted them all as older children (ages 6 to 12) except for one. They hold on for dear life to this "family" because they know the flip side of that. You described our role change perfectly. It's all in the attitude right! Hugs back at ya!
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That's good, I think...some healing, some new growths means you're holding your own!