Welcome to BronchandNTM360social

BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for these communities and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers.

 

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19 minutes ago

Merry

Merry

I am rapidly approaching the one year mark on treatment for NTM. Thank you to this wonderful community for helping me cope, day by day. Since I am now having many more good days than bad, energy-wise, I have been working a lot more, so I don't get to check in with you all as often as I'd like, but know that you are all special to me, and I love hearing your stories and updates. Fingers crossed, just 6 more months of treatment to go!

9 hours ago

  • DeliaMerry, it's so good to hear from you! I'm glad to hear that you're energy levels are working to your advantage. Congrats on reaching the one-year mark! Wishing you a wonderful Summer and please keep us posted!7 hours ago

Merry

Merryvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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9 hours ago

Gretchen

Gretchen

Vacation Plans? Road trips? I know that summer travel requires planning and special consideration when you are dealing with chronic illness. What are your biggest concerns when it comes to traveling? Does your disease hold you back from doing various things in the summer months on a whole?

2 days ago

  • Click to View All Comments5 comment(s) -

  • Ksmiles123Yes, hand sanitizers and wipes are essential. I have to look into portable air purifiers; thank you for bringing this to my attention.:)).
    Yes, eating healthily can be more challenging while traveling. However, we must remind ourselves of the impact of poor food choices on our overall health .12 hours ago

  • MerryAfter a year on the antibiotic cocktail, I'm finally feeling well enough that I want to do things this summer! My mom lives in one of the areas of the U.S. that will see the total eclipse of the sun in August, so she is having an eclipse party for family and we will likely be there. It takes 8-9 hours of driving, and Missouri in August is hard to do because of the heat/humidity, but I'm looking forward to it. :)10 hours ago

  • KristenAh Merry that sounds amazing! I bet that will be so cool. Cheers to feeling well!10 hours ago

sstevens

sstevensvoted on What is an Adverse Drug Reaction?

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3 days ago

sstevens

sstevensvoted on Promoting Personal Well Being

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3 days ago

sstevens

sstevensvoted on NTM Lung Disease & Exercise

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3 days ago

Gretchen

GretchenMade, you inspired my yoga class to do Half Moon pose today and we did multiple breathing exercises was well. I so love you sharing your journey with BronchandNTM360social; the good times practicing yoga and even the bad when you are experiencing an exacerbation. We appreciate all you are, your knowledge, experience and life.

3 days ago

sstevens

sstevensvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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3 days ago

Ksmiles123

Ksmiles123commented onThe Basics of Acid Reflux

 Hello! I used to drink carbonated beverage a lot in the past for the same reason. My GI doc recommended me to stop drinking all carbonated beverages since it does aggravate reflux. Also, mints which everyone thinks help an upset stomach - can...

4 days ago

Kristen

Kristen

Wishing everyone a wonderful start to the new week!

4 days ago

Seniorexpat

Seniorexpatcommented onThe Basics of Acid Reflux

 I have not been diagnosed with GERD, but do recognize some of the symptoms you mention. Do you not also think that some of the beverages you list as to be avoided could help one get rid of excess mucous? For instance, I intentionally use carbonated...

4 days ago

Gretchen

GretchenIf you were unable to join the NTM & Bronchiectasis Conference held at Georgetown University on May 19, 2017, the videos are now available. There is a lot of great content here:

Part I of the NTM & Bronchiectasis Conference:
Anne O'Donnell, MD: Opening Remarks
Craig Kephart: Opening Remarks
https://www.youtube.com/watch?v=THHMhcpl5ww&feature=youtu.be

Part II of the NTM & Bronchiectasis Conference
Alexandra Quittner, PhD
Kenneth Olivier, MD, MPH
Rebecca Prevots, PhD, MPH
Gregory Tino, MD
https://www.youtube.com/watch?v=u6AUbVso-zs&feature=youtu.be

Part III of the NTM & Bronchiectasis Conference
Charles Haworth, MD
Charles Daley, MD
Leah Lande, MD & Rachel Thomson, MBBS, PhD
Doreen Addrizzo-Harris, MD
Anne O'Donnell, MD & Kevin O'Neil, MD
https://www.youtube.com/watch?v=XmZhfJORfVA&feature=youtu.be

Part IV of the NTM & Bronchiectasis Conference
David Griffith, MD
James Chalmers, MD, PhD
Kevin Winthrop, MD, MPH
Dmitri Iarikov, MD, PhD
https://www.youtube.com/watch?v=tfpou1HAmtk&feature=youtu.be

NTM & BRONCHIECTASIS CONFERENCE PART 01

Part I of the NTM & Bronchiectasis Conference at Georgetown University on May 19, 2017. Links to the presentations included in this segment are below. (Pleas...

4 days ago

Ksmiles123

Ksmiles123Hello! Rainy, once again here in PGH. The below article list tips for respiratory care; not all tips may apply . We are on the right track if we can learn one thing to improve the quality of our lives each day. Happy Monday! :)))
http://www.whyamiunhealthy.com/top-10-tips-for-a-ultra-healthy-respiratory-system/

Top 10 Tips For A Ultra Healthy Respiratory System

Respiratory diseases are becoming increasingly common in modern society. The common cold, allergies and sinusitis are commonplace occurrences. It is estimated that up to 300 million people around t…

4 days ago

    Ksmiles123

    Ksmiles123

    Hello! I feel that the Find a Friend is so valuable.
    Patients, family members, caregivers should not travel this journey alone. We have so many great resources available that were not existent a decade ago.

    Find a Friend provides a list of active community members sorted by level of community activity. This is a great tool to use to see your activity level compared to others in the community. You can use the search feature to locate a community member by display name. This is useful if you are looking for someone that you might already know, or have seen them active in the community and want to locate them. You can find this link to the left of this screen .

    5 days ago

      Ksmiles123

      Ksmiles123

      Happy Father's day to all the fathers, god fathers, grandfathers, fathers-to be.
      I hope that you are enjoying a pleasant day!:)))

      5 days ago

        Ksmiles123

        Ksmiles123Hello! Although this article focuses on asthma, I thought this article below may be helpful to some patients are who very sensitive to food products, which may increase inflammation. I know that some of my symptoms get very aggravated by the foods I ingest.
        Please share comments if you notice any specific foods which may result in wheezing or other symptoms.
        http://www.everydayhealth.com/hs/adult-asthma/foods-avoid/?cs=true&xid=nl_EverydayHealthLivingWithAsthma_20170617#08

        7 Foods and Drinks That May Affect Asthma

        Certain foods may affect your asthma symptoms. Find out which ones it may be best to avoid.

        5 days ago

          Made Pramana

          Made PramanaI watched a good TEDx talk today ;)
          https://youtu.be/GwRzjFQa_Og

          The Magic of Not Giving a F*** | Sarah Knight | TEDxCoconutGrove

          Warning: Strong Language The bestselling author of The Life-Changing Magic of Not Giving a F*ck and Get Your Sh*t Together, Sarah Knight, outlines her "NotSo...

          6 days ago

          • MerryLOL! As an introverted person living in a world where parties are supposed to be the ultimate fun, I had to learn this lesson many years ago.9 hours ago

          Margo

          Margo

          Thank you to Smiles and Delia for advice about keeping Tobramycin files refrigerated while flying. I got help from TSA and United airline as you suggested. I had asked because the pharmacist at the hospital and our pulmonary doc's office didn't know. Funny thing though. The morning we flew when my husband and I were packing the vials we noticed a piece of paper at the bottom of the box. It indicated that the vials could be kept unrefrigerated for up to 28 days if refrigeration was not available!

          I did get a wheel chair and used antibiotic wipes on the plane and wore my mask in the airport and on the plane. We had a great time! The only problem was that my portable nebulizer took 40 minutes instead of about 10 with the Tobramycin. It worked OK with albuterol. I haven't figured that out yet.

          1 week ago

          • DeliaMargo, thanks for updating us! I'm glad it all worked out for you. I hope you enjoyed the time with your son and family!1 week ago

          • Ksmiles123Margo,
            So glad that you were able to enjoy your trip!:))). Our goal is to live our life to the fullest , within our limitations.
            Yes, glad you got assistance at th airport/ TSA w a wheelchair.
            Sorry about the time it took to nebulizers w the portable one, bit glad to hear it all worked out!

            I did read about the 28 day notice; however, as a nurse, I tend to err on the overly cautious side. I know the cost of Tobra since I have used it. God forbid, you hit extreme temps, the Tobra got above average room temps and was not as effective. An ice pack assists you to avoid this worst case scenario . Have a pleasant weekend!:)))1 week ago

          • Made PramanaOh I'm happy to hear this! Knowing the preparation that you did and the travel itself makes me happy. Have an enjoyable and safe trip!6 days ago

          Ksmiles123

          Ksmiles123https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/How-to-Participate/FAQ

          Social FAQ | Bronchiectasis and NTM

          FAQ about social360 for Bronchiectasis and NTM.

          1 week ago

          • GretchenThanks Ksmiles-It is nice to have a reminder on the basics of the site; why we have an "I Care" button, how to ask and answer questions, along with how to find the various resources 360 possesses. 1 week ago

          • Ksmiles123Yes, an occasional review is good. Many of us have not grown up in the iPhone age...lol.

            Yes, the " I care", is similiAr to the "I Like" button.
            We love reading everyone's comments.:)))1 week ago

          Ksmiles123

          Ksmiles123Hello! This is an extremely important time ,as summer approaches and the humidity increases to do breathing exercises regularly. A friend, compares this daily exercise to dental flossing. We must clear our lungs, of excessive mucus in the a.m. and p.m. if possible. The exercises below are geared to those who may not have an airway clearance device at home.
          http://www.lung.org/lung-health-and-diseases/protecting-your-lungs/breathing-exercises.html

          Breathing Exercises

          Like aerobic exercise improves your heart function and strengthens your muscles, breathing exercises can make your lungs more efficient.

          1 week ago

            Kristen

            Kristencommented onThe Basics of Acid Reflux

             Glad to see this post back in discussion again -- it is so helpful. Has anyone had success with wedge pillows in general? Wondering if they are comfortable for sleep -- definitely seems like they would help with the reflux issue at night....

            1 week ago

            Gretchen

            Gretchenvoted on The Basics of Acid Reflux

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            1 week ago

            Cbp

            CbpWith health care conversations taking place on the Hill and in homes, we all have differing experiences with our own health insurance. I found this article interesting and sad about people with chronic lung conditions having to choose between paying for their inhalers or other daily necessities. What can be done about such inequity and how do we ensure that patients get the resources they need, to find another breath?

            http://khn.org/news/many-copd-patients-struggle-to-pay-for-each-medicinal-breath/

            Many COPD Patients Struggle To Pay For Each Medicinal Breath

            One in 9 Medicare enrollees have COPD and many of them can’t afford the inhalers that keep them out of the emergency room.

            1 week ago

            • Ksmiles123Yes, so difficult to accept this reality. An ounce of prevention is greater than a pound of cure. Use of effective inhalers to keep patients out if an emergency room is a no brainer.
              I don't know how many generic inhalers are in the market, but this is a possibility to discuss w your doctor.
              It is one's worst nightmare - not being able to breathe and to be without a rescue inhaler and or nebulizer. The angst it produces is huge.1 week ago

            • MerryI found out last week that my Daliresp--a COPD med that has improved my O2 sat measurably--will now be $300+ per month on my husband's new health plan. Hard choices being made right now.9 hours ago

            Elizabeth Benkert

            Elizabeth Benkertvoted on NTM Lung Disease & Exercise

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            1 week ago

            Elizabeth Benkert

            Elizabeth Benkertvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            midyankee

            midyankee

            I also am being treated for GURD and take medicine for it what effect can that have on my COPD?

            1 week ago

            • Click to View All Comments6 comment(s) -

            • midyankeeThanks all who responded to my question. Love you all and glad to be a member.1 week ago

            • Ksmiles123You are welcome!
              Do glad that you are a new member! We are all here to assist one another to improve the everyday quality of our lives .:))). Have a good one!1 week ago

            • Gretchen The Basics of Acid Reflux Blog has a lot of good information. If you click on Blogs to the left side of the page you will find it there!1 week ago

            midyankee

            midyankee

            Today was sort of a rough day. Keep waking up at night coughing and gasping for air. Got up and walked around and finaly back to bed at 4am. Slept inlate to make up for missedf sleep. After taking meds i feel alot beter.

            1 week ago

            Delia

            Deliahttps://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/1097/Insmed-Funds-Expansion-of-COPD-Foundation-Bronchiectasis-and-NTM-Research-Regis.aspx

            Insmed Funds Expansion of COPD Foundation Bronchiectasis and NTM Research Registry

            WASHINGTON, D.C. - June 14, 2017 - The COPD Foundation announced today a grant award from Insmed, Inc. to expand the Bronchiectasis and NTM Research Registry. The Registry is a consolidated database of non-cystic fibrosis Bronchiectasis (NCFB) and/or Nontuberculous Mycobacterium (NTM) patients from …

            1 week ago

            Kandy

            Kandyvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            sstevens

            sstevensWe have heard a lot of climate change in the last few years. Do you think it has an impact on your daily life and your health? Read more in the question of the day from ATS. Some of the answers may surprise you:

            https://ats-365.ascendeventmedia.com/question-of-the-day-are-you-seeing-the-effects-of-climate-change-in-patients/

            Bronchiectasis and NTM Online Community | See What's Happening

            BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, …

            1 week ago

            • Made PramanaHi ssteven. Thanks for sharing. I read the article and read the increase number of patients during forest fire or high pollen count. I think we can see the effect of climate change more clearly in the future ;)1 week ago

            • Ksmiles123SStevens,
              Thank you for posting this.
              Yes, patients who are sensitive to weather changes are experiencing a greater number of flare ups. We need effective treatments to use during these challenging days.
              1 week ago

            Seniorexpat

            Seniorexpatvoted on The Basics of Acid Reflux

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            1 week ago

            Gretchen

            Gretchen

            We know that we must be our own best advocate when it comes to our healthcare. It may be more difficult in the rare disease arena, but also so much more important. When you go to the doctor, what do you feel your biggest challenge is when it comes to advocating for yourself and your care?

            1 week ago

            • Elizabeth BenkertThis is such an important topic! Advocating for yourself can be hard at times but is so important. It is intimidating for some, the health topics can be complex, you may be shy to ask questions, providers are often busy and you may feel like you are unable to ask questions because you don't want to consume their time or maybe discussing your disease is emotional for you. I can personally relate to all of these feelings!

              What I have learned:
              It helps to write questions down your questions ahead of time, know the topics you want to discuss, they may not be the same as the topics your provider plans on discussing with you. Ask for your clinic note to be printed at the end of each visit, when you get home you can use it as a reference to research topics you want more information on and it will also help you remember conversation points that may slip your mind by the time you get home. Most of all, do not feel like a burden- ask as many questions as you like and take the time you need to during your visits to leave feeling confident in the conversation you had with your provider; don't allow the atmosphere or pace of the clinic to rush you. I hope this helps!! 1 week ago

            • Made PramanaI feel like communication is the hardest part. In the past my doctor wasn't explained the "chronic" nature in my disease. My parents thought so many times that my disease can be cured.
              And then I usually told my symptoms to my doctor (increase heart beat during walking) and ask about that. The doctor didn't value my symptoms or my stories. It feels like the things that I feel are not true.1 week ago

            • Ksmiles123This is heart wrenching to read. Doctors are supposed to be " there" to listen and care for a person on a biopsychosocial level.
              You are the only one who truly knows what your symptoms are, the doctor needs to listen.
              Perhaps, a new doctor will come your way in the future.1 week ago

            Randel

            Randelvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            Made Pramana

            Made Pramanavoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            Made Pramana

            Made Pramana

            Hi guys I'm sorry I haven't tell you again. After taking the antibiotic I feel my body is not warm anymore. The mucus is still more than usual but it's not dark anymore. I think it's slowly recovered. Need to take rest. Thank you so much for your concern! ;)

            1 week ago

            Randel

            Randelvoted on NTM Lung Disease & Exercise

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            1 week ago

            shkeevy

            shkeevyvoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            Delia

            Deliavoted on Energy Management-The Key to Living with NTM/Bronchiectasis

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            1 week ago

            Kristen

            KristenI just took a look at the USA weather map and 2/3 of the country is bright red. How is everyone doing in this heat? If you aren't in the US, how is it where you are? Sending cool thoughts ...

            1 week ago

            Gretchen

            Gretchenadded a new article Energy Management-The Key to Living with NTM/Bronchiectasis

            This blog post was written by Katie Keating, RN, MS, patient advocate

            NTM/Bronchiectasis patients have an invisible disorder, which as a patient, I feel few truly understand.

            Dealing with chronic lung disease on a daily basis can be extremely challenging. A major symptom for many NTM/Bronchiectasis patients is fatigue, which often fluctuates with weather changes, among other things.

            I describe myself as a Type A personality whose body on many days will not cooperate...

            1 week ago

            Ksmiles123

            Ksmiles123Hello! Another important nutrition article. The humidity can result in greater fatigue for many of us.
            Hopefully, some of the tips below will assist you.:))

            http://www.emergencyemail.org/newsemergency/anmviewer.asp?a=8137&z=58

            1 week ago

              Ksmiles123

              Ksmiles123Hello! I thought the article below would be helpful throughout the summer months.:)))
              http://www.emergencyemail.org/newsemergency/anmviewer.asp?a=8107&z=58

              1 week ago

                Made Pramana

                Made Pramana

                Hi guys. On Friday after the yoga session I coughed some mucus which were thick. Then I feel my body was warm eventhough it's 36.3 celcius. Yesterday on Saturday beside the thick mucus become darker. I texted my doctor but didn't get reply. So I took Azithromycin (24 hours after the symptoms). It's Sunday morning now. I feel like my body is not so warm.
                Ihope this antibiotic is the right one to stop my infection.

                1 week ago

                • Click to View All Comments4 comment(s) -

                • Made PramanaHi Katie. Thank you! Yes, on Saturday morning I was thinking to go to a private laboratorium and have a sputum culture test. I saw my sputum become dark and thinkng about exacerbation. I knew I should put my sputum into a pot and bring it to laboratorium before starting antibiotic treatment. I didn't know how to explain this to my parents. It's private labs so I need to pay on my own. So I took the antibiotic in the afternoon without the sputum culture test. In the future maybe I will go the labs secretly :)1 week ago

                • Ksmiles123Only you know what you have to do. I wish there was a simpler way for all to obtain cultures and sensitities at home....
                  Perhaps, this will be available someday w all the advances in biotech being made. Outside c/ s are very expensive. It is a hassle getting to the lab when you are feeling awful.
                  I hope that you feel better soon.
                  Keep us posted .1 week ago

                • DeliaHi Made, sorry to hear you weren't feeling well. Hopefully you can get in touch with your doc soon. Please keep us posted!1 week ago

                Ksmiles123

                Ksmiles123Hello! A good review about our lungs. I hope that you are keeping cool on this warm day.:))
                https://bronchiectasisnewstoday.com/social-clips/2016/10/14/8-curious-facts-about-lungs/

                8 Interesting Facts About Lungs - Bronchiectasis News Today

                There are many facts about the respiratory system and the lungs that most people are unaware of.

                1 week ago

                  Ksmiles123

                  Ksmiles123received the badge Answer Oracle

                  Earned the Answer Oracle badge!

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123answered the question Cause(s) of Bronchiectasis

                  Hello! I realize how frustrating it is attempting to find the right Doctor, the right treatment. You are being headed in the right direction and hopefully this trip will provide you with the answers you need. At times like this, we must attempt to hold …
                  Made PramanaChrisVAand 2 others also answered the question Made Pramanaand 4 others also answered the question

                  2 weeks ago

                  Gretchen

                  Gretchen

                  Are you in the areas of the country that may be impacted by this weekends heat wave? What are some tips you have for finding comfort in this sort of weather while living with a lung condition? Please share with the community-some may be struggling with how to best deal with extreme heat.

                  2 weeks ago

                  • Click to View All Comments6 comment(s) -

                  • Ksmiles123Hello! Just a friendly reminder to make sure that room air conditioners are cleaned well prior to turning them on.
                    Also, hot tubs are not advised for patients with respiratory disorders.1 week ago

                  • KandyWind how about wind that never stops? Got two playing ball now so be busy. Don't mind the temps outside if dew point and humdiity are low but want cool in my place when I am there.1 week ago

                  • Ksmiles123Kandy,
                    How about a light matierial scarf, bandana type? To cover your mouth if winds are strong?
                    I know we may look odd, but I use a lite scarf to cover my mouth when super windy throughout the year.
                    Yes, keep cool while indoors.:))1 week ago

                  Made Pramana

                  Made PramanaJust finished doing yoga this morning. Coughed and release mucus twice. Have a good night everyone! :)

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123Hello! As we approach summer, the heat and humidity in some areas, I thought if would be good to review the following link on reducing exposure to NTM.
                  https://www.ntminfo.org/patients/living-with-ntm/reducing-exposure

                  Please comments with tips or other suggestions to help others. Thank you! :))

                  Reducing Exposure to NTM

                  There is empirical evidence that NTM infection may occur by exposure to organisms in the environment such as our water or soil. In a substantial perce...

                  2 weeks ago

                  • Made PramanaHi Katie. Thanks for the article. NTM is one of the bugs that are hard to avoid. It's on the soil and water. The article mentiones some good tips that we can apply. I don't use shower and hot bath up. I love trees and gardening. Need to reduce this kind of activity and wearing masks :)2 weeks ago

                  • Ksmiles123Made,
                    I am so glad that you reviewed the article and will take steps to avoid NTM. As the old cliche goes-" An ounce of prevention is greater than a pound of cure"...
                    :)))). Have a great day!2 weeks ago

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                  Medical Advice

                  It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.