1. < MAC & Bronchiectasis

I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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lauralynn | @lauralynn | Jun 20, 2016
In reply to @lauralynn "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..." + (show)
@lauralynn

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura

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Hi Katherine, No please share. I was a patient advocate / educator for 3 years in the Alpha-1 community. I know a bit about this disease, and, the other diseases that tag along with it....like bronchiectasis, MAC, etc. I HIGHLY recommend anyone with bronchiectasis, or NTM / MAC to be tested for Alpha-1 - it is a susceptibility factor for bronchiectasis and NTM. Almost all pulmonologist have access to free testing for Alpha-1 through the drug companies. They provide a free test kit and results. It costs nothing to the patient or the doctor. Ask for it. Please contact me by private message if you need help. I DO NOT work for any company. Can't post my email as this site won't allow it. Not sure why.....

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 20, 2016
In reply to @lauralynn "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..." + (show)
@lauralynn

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura

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Hi @lauralynn,
We advise members to share their personal contact information by private message rather than publicly on the discussion threads. To private message another member, simple click their username and then click the envelope icon in their profile.
Safe sharing 🙂

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mmteach | @mmteach | Jun 21, 2016
In reply to @lauralynn "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..." + (show)
@lauralynn

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura

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Hi lauralynn, Thanks for the response. I am not coughing at all, I never have. So I'm not sure about any treatments at this time. The only thing the doctor has told is to prevent infections. So they said I should take a garlic and tumeric pill. I should try to build up my immune system,.I am trying to walk a little more and trying to eat healthier, but the doctor siad I should see him in 4-6 months. Is there anything else I should be doing to be preventive? Thanks,
Mary

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mmteach | @mmteach | Jun 21, 2016
In reply to @katemn "Hello MM, so glad you found this forum. Personally what I do for myself and my..." + (show)
@katemn

Hello MM, so glad you found this forum. Personally what I do for myself and my husband is google the name of the doctor .. hopefully by looking at EVERYTHING that comes up I can find out where they went to school (the tougher the school they could get into I figure they must be pretty bright!) .. sometimes you can see what their "interests" are .. what publications they have written. Then you can hopefully see if they have any experience in Bronchiectasis. You might call your insurance network .. get the name of every Pulmonologist .. call every single one .. AND request to be told the NUMBER of Bronchiectasis patients they have worked with in the past two years. That would be VERY important .. if they do NOT have current/recent patients .. that means they aren't keeping current with the disease.

Meanwhile research .. BUT do NOT be so scared!! You MUST be your own best advocate! IF there is NOT a specialist within your network .. you may have to raise KAIN to be referred to someone outside who CAN help you. You may have to pay 80/20 .. that is what happens to me .. but it would be worth it to get straight answers. If that happens .. try to get referred to Dr. Timothy Aksamit at Mayo Clinic in Rochester, MN. He is an expert Pulmonologist.

MEANWHILE .. it is VERY important to keep your lungs clear. The mucus in the bronchial tubes can be a breeding ground for mycobacterium resulting in a disease called MAI/MAC which happened to me. Be SURE to exercise .. get enough sleep .. eat healthy .. AND NOT stress over this. Stress is terrible for our bodies. Remember .. our bodies CANNOT take care of us .. UNLESS we take good care of it! Be kind to yourself on this our shared journey. Don't be so afraid .. I was diagnosed in 2011 .. and all I do is cough .. BIG TIME which is a pain in the batooty .. but lots of people have a lot of bigger problems than I have. Go forward in joy .. AND peace! I am sending you positive energy and big hugs! Katherine

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Thanks for your reply, I am not sure what to do at this point as I only have 1 small section on each side of my lung that they say is bronchiectasis. My lung function was almost normal, and I am doing another CAT scan. Besides trying to build up my immunity with garlic and tumeric pills, I was told to come back in 4-6 months. I am not coughing at all, never really did. Should I just maintain a healthy diet, exercise and building up my immunity? go to mayo clinic? wait till I get an actual infection? I am waiting for the results of my alpha-? blood test, too. Thanks for any help you can throw my way. Mary

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2 replies
lauralynn | @lauralynn | Jun 21, 2016
In reply to @lauralynn "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..." + (show)
@lauralynn

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura

Jump to this post

Wow, your doctors are prescribing some very holistic things...garlic and turmeric, thats awesome. I take turmeric and eat a lot of garlic. I'm a big believer in boosting the immune system. Since I don't know how progressed your bronchiectasis is, it's hard to advise and I'm not a doctor. Sounds like you have some good docs. I would definitely step up the exercise to clear out your lungs and boost your immune system, and, I would ask your doctors about pulmonary clearance. I am a big believer in pulmonary hygiene. I think this might help prevent bronchiectasis progression. Get the gunk out of your airways so it can't start an infection which in turn leads to bronchiectasis progression. My opinion.

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mmteach | @mmteach | Jun 21, 2016
In reply to @lauralynn "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..." + (show)
@lauralynn

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura

Jump to this post

Thanks for your input. My bronchiectasis is only a little spot on each lung right now. So i have nothing to clear out of my lungs as of right now. No coughing, since there is no gunk in my lungs as of yet. That is why I don't know how worried I should be at this point-Is it even possible to keep it this way?

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mmteach | @mmteach | Jun 23, 2016

Just looking for advice. I was recently diagnosed with bronchiectasis, had a cat scan, blood work, and mom died from it. I do not have any symptoms, not coughing at this point or ever for that matter. After reading different articles, and the different group talks, I am not sure if I should be more proactive. SHould I try to see a specialist at Mayo, do I have a bronchoscopy(sp?), without having any symptoms, should I just work on building my immunity and exercising? Thanks for any advice or suggestions, not sure what a specialist would do at this point because I don't have any active symptoms at this point.
Thanks,
Mary

REPLY
1 reply
Ali Skahan | @aliskahan | Jun 23, 2016
In reply to @mmteach "Just looking for advice. I was recently diagnosed with bronchiectasis, had a cat scan, blood work,..." + (show)
@mmteach

Just looking for advice. I was recently diagnosed with bronchiectasis, had a cat scan, blood work, and mom died from it. I do not have any symptoms, not coughing at this point or ever for that matter. After reading different articles, and the different group talks, I am not sure if I should be more proactive. SHould I try to see a specialist at Mayo, do I have a bronchoscopy(sp?), without having any symptoms, should I just work on building my immunity and exercising? Thanks for any advice or suggestions, not sure what a specialist would do at this point because I don't have any active symptoms at this point.
Thanks,
Mary

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Hi @mmteach, I moved your message over to your original bronchiectasis thread because you've started a great discussion on this topic and I think you'll be more likely to find the right connections within this thread, especially now that other users have reached out about it as well. I think because of the concerns you have about bronchiectasis and how you saw it effect your mother, it may be beneficial to be proactive, if not just to eliminate some of the anxiety you may have about the next steps to take.

Have you spoken to the doctor who diagnosed you about next steps?

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Lisa Y | @tutti | Jul 10, 2016

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

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29 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

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Wonderful that your doctor in Cleveland will be working with a team at Mayo Clinic. I know @katemn will applaud this. I'm also bringing @dixer into this discussion about bronchiectasis mycobacterium abscessus. Both have experience with this.

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