Please Share your MAC and Bronch Success Stories - However Small

Posted by Sue, Volunteer Mentor @sueinmn, Aug 22, 2021

Please tell us about anything you have done to keep the dreaded infections at bay, or improving your health/breathing/energy.

@thumperguy and @kathyhg – you have both told us good news lately, care to share?
Sue

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Well, twice daily nebulizing with 7% saline solution is certainly “center ring.” However, my wife is urging me to return to using the percussion vest also, as she believes coughing has recently increased. So out of the closet with good ole Thumper.

I have at least some confidence that my considerable commitment to staying fit, trim, and generally healthy, including following an exclusively plant-based way-of-eating since 2007 is also instrumental. Being fully retired, living at a favorable latitude with a convenient “hidey hole beside my home and owning a bikini enables me to get year round sun exposure over well beyond 90% of my bony Bod. I feel very fortunate. Don

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I have also made dietary and lifestyle changes that are smart and that I should have done years ago. I try to do cardio exercise every day and I walk a lot. I mostly avoid gluten and dairy (or have lactose free dairy if I have any); I eat very little meat; I avoid sugar and processed foods. Either mac or aging or a combination of things have left me with an overall aversion to meat, alcohol and coffee and some of the foods that aren’t good for me so that part has been really easy. I do miss a good glass of red wine with dinner and a cup of coffee in the morning though! I have come to enjoy the time it takes to nebulize every day. Like Don, I feel very fortunate.

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Wow Kathy, Makin’ lemonade when life deals ya lemons is child’s’ play to you. You parlay aversions to victories!

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7% saline nebs have been my salvation. I had to quit the Big 3 in December 2019 even though I still had MAC, because my body could no longer tolerate the side effects.
With my doctors' okay, I started a regiment of 7% saline nebs, with levalbuterol or duoneb as needed, and airway clearance. Gradually I began to recover weight and energy. From reading here, I added a NAC supplement, and my PT recommended an Omega 3 supplement as well. Now, 20 months later I have had only 1 exacerbation which was managed with increased nebs and steroids – no antibiotics.
I still have one cavity in my lung, and will see my Pulmo later this week for a full eval.
Thanks to all the helpful people and information on Connect, I feel like I have gotten my life back – something I did not expect when I was diagnosed in 2018!
Sue

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Can’t find it now Sue, but I just read that you reached a 30 month milestone. WOWZERS! from the world’s oldest teenager.

Just came inside soaked in sweat from a midday sunning session. It’s hotter than the “Hinges of Hell” in “Big D.” Don

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@kathyhg

I have also made dietary and lifestyle changes that are smart and that I should have done years ago. I try to do cardio exercise every day and I walk a lot. I mostly avoid gluten and dairy (or have lactose free dairy if I have any); I eat very little meat; I avoid sugar and processed foods. Either mac or aging or a combination of things have left me with an overall aversion to meat, alcohol and coffee and some of the foods that aren’t good for me so that part has been really easy. I do miss a good glass of red wine with dinner and a cup of coffee in the morning though! I have come to enjoy the time it takes to nebulize every day. Like Don, I feel very fortunate.

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Our lifestyles are similar and I wanted to share the little nuances. Like I have discovered Oat milk and before that almond milk ones with no sugar. I use to be vegetarian but since I lost so much weight my Dr suggested eggs and some fish. But mostly greens salads, beans, tofu and fruit in the morning, bananas, blueberries, papayas. I miss coffee so just on occasion. and wine. Thumper, thanks for the Bragg suggestion. Making food tasty is a challenge.

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Just recently started posting again..feels nice to be back..I have Bronchiectasis, MAC, MAI and colonized pseudo..was on the big 3 2 1/2 yrs ago..what has worked for me, increasing my lung capacity from 61 to 76 within a year is nebulizing albuteral, then attaching my Aerobika to nebulizer and nebulizing 7 percent saline, then AC clearance on my back for app 20, then nebulize Colistin every other month..takes just over an hr, 2x a day..boiling water 10 minutes for drinking, and another 10 minutes for sterilizing in a silicone basket in a stainless steel pot..I have now been able to push back the pseudo for 7 weeks off, and 4 weeks nebulizing Colistin..I’m pretty diligent with this..1hr daily exercise is huge, and allows me to bring up more mucous..my recent CT shows immense improvement..❤️🙏🏻

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@megan123

Just recently started posting again..feels nice to be back..I have Bronchiectasis, MAC, MAI and colonized pseudo..was on the big 3 2 1/2 yrs ago..what has worked for me, increasing my lung capacity from 61 to 76 within a year is nebulizing albuteral, then attaching my Aerobika to nebulizer and nebulizing 7 percent saline, then AC clearance on my back for app 20, then nebulize Colistin every other month..takes just over an hr, 2x a day..boiling water 10 minutes for drinking, and another 10 minutes for sterilizing in a silicone basket in a stainless steel pot..I have now been able to push back the pseudo for 7 weeks off, and 4 weeks nebulizing Colistin..I’m pretty diligent with this..1hr daily exercise is huge, and allows me to bring up more mucous..my recent CT shows immense improvement..❤️🙏🏻

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“Immense! Now that’s impressive Megan. Don

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I have been on azithromycin,Clofazamine and Ethambutal for 1 1/2 years. How long do people usually stay on these medicines?
I take the medication‘s fine no side effects . My sputum‘s specimen six months ago said that I still had Mac and I sent a new specimen in yesterday. I am fairly asymptomatic although I am bringing up a little bit more in the mornings but I would call myself asymptomatic except for sob — but I do play golf in Tampa Florida and with the humidity that can take it out of you I hydrate a lot. Life is good right now.

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@hauoli

Our lifestyles are similar and I wanted to share the little nuances. Like I have discovered Oat milk and before that almond milk ones with no sugar. I use to be vegetarian but since I lost so much weight my Dr suggested eggs and some fish. But mostly greens salads, beans, tofu and fruit in the morning, bananas, blueberries, papayas. I miss coffee so just on occasion. and wine. Thumper, thanks for the Bragg suggestion. Making food tasty is a challenge.

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Tajin – Mexican Chili/lime/salt seasoning – just a little peps up any food! High quality flavored balsamic vinegars, fresh lemon & lime juice, all kinds of herbs – if you have a natural grocery with bulk spices, you can sniff & try tiny amounts to find some that make your taste buds happy….

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@judyhodgern

I have been on azithromycin,Clofazamine and Ethambutal for 1 1/2 years. How long do people usually stay on these medicines?
I take the medication‘s fine no side effects . My sputum‘s specimen six months ago said that I still had Mac and I sent a new specimen in yesterday. I am fairly asymptomatic although I am bringing up a little bit more in the mornings but I would call myself asymptomatic except for sob — but I do play golf in Tampa Florida and with the humidity that can take it out of you I hydrate a lot. Life is good right now.

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Interesting. I was on Azithro, Rifabin, and ethanbutol for 18 months finished two years ago. M.intercellular was killed.😀However the cavity was not closed and I became very ill with m. Abscessis in June Now on daily IV’s of Amikacin, Nuzyra and Imipenem as well as oral Clogazamine all for 6 months. Will have surgery at NJH in Denver to remove cavity in October. This is tough. Has anyone else gone through this treatment? I’m trying to stay positive and I am thankful for my doctor at NJH for knowing how to handle this awful disease.

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@megan123

Just recently started posting again..feels nice to be back..I have Bronchiectasis, MAC, MAI and colonized pseudo..was on the big 3 2 1/2 yrs ago..what has worked for me, increasing my lung capacity from 61 to 76 within a year is nebulizing albuteral, then attaching my Aerobika to nebulizer and nebulizing 7 percent saline, then AC clearance on my back for app 20, then nebulize Colistin every other month..takes just over an hr, 2x a day..boiling water 10 minutes for drinking, and another 10 minutes for sterilizing in a silicone basket in a stainless steel pot..I have now been able to push back the pseudo for 7 weeks off, and 4 weeks nebulizing Colistin..I’m pretty diligent with this..1hr daily exercise is huge, and allows me to bring up more mucous..my recent CT shows immense improvement..❤️🙏🏻

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Jennifer, you are an inspiration for me. Congratulations and wishes for continuing success.

Rita

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