Kandy

KandyThought this was a great video to watch on bronchiectasis!!

https://www.youtube.com/watch?v=uNeprw1rsgE

moments ago

    Carey

    Careyvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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    13 minutes ago

    Merry

    Merry

    Flu shot done and I'm feeling weekend-ish. I hope you all have a lovely, healthy weekend and get a chance to do something to celebrate autumn.

    22 hours ago

    DiannaM

    DiannaMvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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    22 hours ago

    Ksmiles123

    Ksmiles123

    Hello! The link below is a printable sheet with details of the timing for pneumoccoal vaccinations.
    https://www.cdc.gov/vaccines/vpd/pneumo/downloads/pneumo-vaccine-timing.pdf

    1 day ago

      newly

      newlyreceived the badge Getting started

      Earned the Getting started badge!
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      1 day ago

      Delia

      Delia

      Do you live within driving distance of Silver Spring, Maryland? Are you willing to speak publicly about how bronchiectasis has affected your life or the life of someone you care for? We are looking for individuals living with bronchiectasis or their caregivers to join us in educating the Food and Drug Administration to make sure that those who consider whether or not to approve new treatments for bronchiectasis truly understand what the burden of the disease is and what matters most to the community. If you are interested in learning more please email jsullivan@copdfoundation.org by Monday, October 23rd. There may be more opportunities in the future, but the current opportunity to testify will occur on November 16th and there is a deadline of October 24th to register, so contact us to explore if this opportunity is a fit for you. We will make sure to keep the community informed about potential new treatments, the FDA process and any other opportunities to make your voices heard in person and online!

      2 days ago

      Ksmiles123

      Ksmiles123https://www.mindbodygreen.com/articles/the-top-foods-that-cause-inflammation?utm_source=mbg&utm_medium=email&utm_campaign=171018

      2 days ago

      Gretchen

      Gretchenvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

      Gave a thumbs up for a blog post!

      3 days ago

      Ksmiles123

      Ksmiles123Hello! the link below discusses medicare plans for those who are reviewing their options during this enrollment period which has just begun. http://www.aarp.org/health/medicare-insurance/info-2017/choosing-medicare-plan.html

      3 days ago

        Made Pramana

        Made Pramanavoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

        Gave a thumbs up for a blog post!

        3 days ago

        Gretchen

        Gretchen

        What a difference a day makes...our weather has changed dramatically in the last few days. It was so uncomfortably humid and now it seems Fall really has arrived! How is everyone doing? Is the decrease in humidity helping your breathing today?

        3 days ago

        Ksmiles123

        Ksmiles123Hello! An inspirational article. :)
        https://themighty.com/2017/10/inspiration-bad-day-chronic-illness-pain/

        4 days ago

        Ksmiles123

        Ksmiles123

        Hello! How are you dealing with the severe weather changes?
        It hit me like a ton on bricks going from 70 over the weekend to 40 today.
        Weather changes do not impact all NTM / Bronchiectasis patients, but greatly impact functioning on those who are affected. Also, some patients are diagnosed with asthma at a later age, combined with the diagnosis of bronchiectasis. Please discuss wheezing or any other related respiratory symptoms which occur with major weather changes with your doctor.

        4 days ago

        Merry

        Merry

        Who wants to talk about mold? ;) Partial results are in from my sputum cultures and I have two species of Aspergillus. Yuck. Still waiting to hear if the NTM has been successfully evicted.

        4 days ago

        Ksmiles123

        Ksmiles123Hello! Have you received your pneumococcal vaccination?
        Below is information on the pneumococcal vaccination. This is as important as the flu vaccination for patients with respiratory issues.https://www.cdc.gov/vaccines/vpd/pneumo/public/index.html
        I hope that you find this review helpful.

        1 week ago

        Ksmiles123

        Ksmiles123Hello! I am posting this link as a reminder of the 93 questions answered at this point .
        https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers
        Do you have a specific question you would like answered?

        1 week ago

          Gretchen

          Gretchenvoted on The Bronchiectasis and NTM Information Line is now open!

          Gave a thumbs up for a blog post!

          1 week ago

          Made Pramana

          Made PramanaI really like this article :)
          http://www.theunbrokensmile.com/living-a-whole-hearted-life-despite-illness/?utm_content=bufferfecc6&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

          1 week ago

          Ksmiles123

          Ksmiles123Hello! Below is a great article on the reality of chronic illness. All 12 things may not apply for your personal case; however, I just want to convey to you that you are not alone dealing with some of the 12 items discussed in the article.
          http://masteringhealthhappiness.com/2017/01/12/important-things-you-should-know-about-chronic-illness/

          1 week ago

          Kandy

          Kandyvoted on Promoting Personal Well Being

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          1 week ago

          Kristen

          Kristencommented onThe Bronchiectasis and NTM Information Line is now open!

           So glad to see this -- what an exciting new resource for this community. Congratulations and thanks to all who made this happen....

          1 week ago

          LJ Walsh

          LJ Walshvoted on The Bronchiectasis and NTM Information Line is now open!

          Gave a thumbs up for a blog post!

          1 week ago

          Kristen

          KristenAccording to the Merriam-Webster Dictionary, Advocacy is defined as, "the act or process of supporting a cause or proposal: the act or process of advocating something." Especially dealing with "orphan" diseases and those with little public support, we all should do our part, to be a champion for our disease, lending our voice to the overall cause of forward movement in research and therapies.

          http://rareaction.org/daysofaction/

          1 week ago

          Randel

          Randelvoted on Promoting Personal Well Being

          Gave a thumbs up for a blog post!

          1 week ago

          Ksmiles123

          Ksmiles123Hello! Below is a 3 minute u-tube video which reviews bronchiectasis.
          It is a reminder of how important infection control precautions are at this time of the year. The less infections we have, the less inflammation.
          .https://bronchiectasisnewstoday.com/2017/09/25/using-simple-diagrams-explain-bronchiectasis-pathology/?utm_source=BRO+E-mail+List&utm_campaign=adf5713c45-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-adf5713c45-72116489

          1 week ago

          Ksmiles123

          Ksmiles123Hello! Below is an article on inhaled Cipro. The NTM /Bronchiectasis community are making gain everyday. :)
          https://bronchiectasisnewstoday.com/2017/09/26/fda-accepts-aradigms-nda-for-linhaliq-to-treat-non-cystic-fibrosis-bronchiectasis/?utm_source=BRO+E-mail+List&utm_campaign=33eecc16ae-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-33eecc16ae-72116489

          1 week ago

            Ksmiles123

            Ksmiles123answered the question Disability

            Hello! I agree that the current medical system has many flaws which are so unfair to families like yours. I was hoping this was to be resolved with Obamacare... Did you think of asking your local social worker about other local resourcespossibilities?
            also answered the question also answered the question

            1 week ago

            Ksmiles123

            Ksmiles123

            Hello! It is a very humid day , here in Pittsburgh. I just turned the air conditioner on - sounds odd to be doing so on October 9th. However, the quality of air is greatly impacted by the current storms. Is the weather affecting you today?

            1 week ago

            sstevens

            sstevens

            Chronic lung diseases are more prevalent in older adults, as our bodies are slower to repair damage. Here is an interesting article that explores the history of asthma, genetic susceptibility and treatment in the old and young.

            https://health.usnews.com/health-care/patient-advice/articles/2017-10-06/can-young-people-get-copd?int=health-care-rec

            1 week ago

              Cbp

              CbpWorking with Gretchen today under deadlines, but we are listening to this beautiful artist (Ludovico Einaudi) and remembering to take deep breaths and appreciate what is around us. I know with chronic illness everyday can be very stressful and affect ones mood - I hope listening to this might ease some of those feelings. https://www.youtube.com/watch?v=KzOpSt5tG4Q

              1 week ago

              Ksmiles123

              Ksmiles123answered the question Daliresp, Pulmonary Rehabilitation

              Oklawowan, Hello! It does not sound as if you need pulmonary rehab based on your current established exercise routine. The other pieces of rehabilitation include nutrition and stress management. I wish you the best in enjoying your retirement and …

              1 week ago

              Ksmiles123

              Ksmiles123Hello! The article below lists five reasons why you should get flu shot.
              http://www.businessinsider.com/flu-shot-why-you-should-get-the-vaccine-2017-10?nr_email_referer=1&utm_source=Sailthru&utm_medium=email&utm_content=ScienceSelect&pt=385758&ct=Sailthru_BI_Newsletters&mt=8&utm_campaign=BI%20Science%202017-10-03&utm_term=Science%20Select%20-%20Engaged%2C%20Active%2C%20Passive%2C%20Disengaged
              Have you made your appointment for the end of this month or in early November?

              2 weeks ago

              Gretchen

              Gretchencommented onThe Bronchiectasis and NTM Information Line is now open!

               This is a great resource! ...

              2 weeks ago

              Ksmiles123

              Ksmiles123Hello! The article below describes a series of truly unfortunate events. We must advocate for our needs and not accept sub par care. Please do not ever let the below scenario happen to you or your loved ones.
              http://www.empr.com/features/phone-diagnosis-prescription-medical-malpratice-c-difficile-bacteria/article/697146/2/
              Have you ever been brushed off by a practicioner, such as in the example below due to the nature of your chronic condition?

              2 weeks ago

                Ksmiles123

                Ksmiles123Hello! More great news for the NTM /Bronchiectasis Community.
                https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-Oxide-Therapy-Granted-Orphan-Drug-Designation-by-the-U-S-Food-and-Drug-Administration-for-Treating-Infections-Caused-by-Nontuberculous-Mycobacteria-.html">https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-Oxide-Therapy-Granted-Orphan-Drug-Designation-by-the-U-S-Food-and-Drug-Administration-for-Treating-Infections-Caused-by-Nontuberculous-Mycobacteria-.html
                https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-

                2 weeks ago

                • DeliaThis is interesting. I've never heard of this type of therapy for NTM infections. It’s great to see companies investing in the discovery and development of new types of therapy for NTM. Thanks for sharing!2 weeks ago

                • Ksmiles123Delia,
                  Yes, things are really starting to happen for bronchiectasis patients.

                  I realize new patients may not understand my JOY in reading and posting these articles. I have been awaiting new therapies for over a decade.

                  If you are a new patient, please post any question you wish to get an answer. We will do our best to answer you in a timely manner.
                  2 weeks ago

                Ksmiles123

                Ksmiles123

                Hello! Today is Wear Pink Day for breast cancer awareness. I had envisioned support, such as this site, in addition to NTM Info& Research over a decade ago. Support and educational resources make the NTM journey much easier to handle. I am hoping and praying that we only continue to expand on these resources over the next few years. I am so much more hopeful since new therapies are in the pipeline . These new therapies and drugs will assist us in increasing awareness, education. Increased awareness will help the public understand the impact of this invisible disease. Most of us do not loose hair or have visible signs of NTM.
                Do you have any specific topics that you would like to read about on this site?

                2 weeks ago

                Ksmiles123

                Ksmiles123Hello! Below is information and a link to register for a presentation on Drinking Water Hygiene Webinar.

                With the high interest from July's "Water Faucets as a Source of ICU Patient Infection & Colonization" webinar presented by Dr. Mike Weinbren, we bring you "Biofilms - The Way Microorganisms Organize Their Social Life in Drinking Water" - October 23rd at 12:00 pm EST.

                This CE accredited webinar will be delivered by Professor Hans-Curt Flemming, Biofilm Centre at the University Duisburg-Essen, Germany. As a pioneering biofilm researcher, his fascination with biofilms and the bacteria life has fueled his more than 30 years of biofilm work and multiple publications.

                What You Will Learn:
                • Why microorganisms form biofilms and their role as a contamination source in drinking water.
                • Detection of bacteria and biofilm in water systems.
                • Occurrence and relevance of Viable But Non-culturable Cells (VBNC) by clinically-relevant bacteria.
                • Influence of plumbing materials on bacterial and biofilm growth.
                • Influence of chemical disinfection on bacterial and biofilm growth.
                https://event.on24.com/eventRegistration/EventLobbyServlet?target=reg20.jsp&partnerref=emailing1&eventid=1497514&sessionid=1&key=8DEB48BDE15DABCD69FC3EF3FC97D4BB®Tag=&sourcepage=register

                2 weeks ago

                  Amy

                  Amyvoted on The Bronchiectasis and NTM Information Line is now open!

                  Gave a thumbs up for a blog post!

                  2 weeks ago

                  Gretchen

                  Gretchen

                  Our thoughts and prayers to everyone suffering with the senseless tragedy in Las vegas. Take a moment to offer up a prayer of gratitude for your loved ones, for all the beauty that still surrounds us as well as a prayer for the healing of our communities.

                  2 weeks ago

                  Elizabeth Benkert

                  Elizabeth Benkertvoted on The Bronchiectasis and NTM Information Line is now open!

                  Gave a thumbs up for a blog post!

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123

                  Hello! Below are some myths and facts, from a Princeton Medicine Express Care Advertisement, September 2017.
                  Flu season is coming — Get the facts!
                  With September winding down you may think it's too early to start thinking about the flu — but it's not. It's important to be prepared and know the facts when it comes to common misconceptions about the flu.
                  • MYTH: The flu vaccine can give you the flu.
                  • FACT: The flu vaccine cannot give you the flu. It is made up of dead viruses, which cannot give you the flu.
                  • MYTH: The flu is just a bad cold.
                  • FACT: The flu is not just a bad cold. Cold symptoms last a few days while the flu can affect you for weeks. The flu can also lead to bronchitis, pneumonia and more serious conditions.
                  • MYTH: You only need to get the flu vaccine once.
                  • FACT: It's important to get the flu vaccine every year. The flu virus changes every year so it's important to get vaccinated annually to increase your chances of being prepared against the current year's strain of the virus.
                  • MYTH: You can only get the flu in late winter.
                  • FACT: You can get the flu as early as October. The flu season tends to peak between December and March, but you can get the flu as early as October or as late as May.

                  I will get my flu shot at the end of October. Have you planned getting your shot?

                  2 weeks ago

                  Safbham

                  Safbham

                  I am really not doing well. Having had a Bronchoscopy to remove stuff... and being on nebulized antibiotics as well as IV antibiotics, I can't make it far without being completely winded. I climbed a staircase last night and it took 10 minutes to calm down the breathlessness. I am still coughing up a variety of colors and this is the worst I have ever been in this battle with Pseudomonas.
                  Am I alone in this? I am to see my doctor nxt week (infectious disease doc) and my pulmonary doc sometime at the end of the month. My recent visit to the pulmonary had me seeing a P.N..
                  My ID doc told me I need to get stuff out of my lungs and suggested breathing therapy class
                  2 days a week from 9:00 till noon. I asked for a vest ... but this is what I got... I am at a loss ..
                  panting constantly. Anyone have any thing like this??

                  2 weeks ago

                  • Click to View All Comments5 comment(s) -
                  • GretchenWelcome Safbham. I am so sorry to hear of these struggles. The knowledgable participants above have given you some helpful advise. I hope you are feeling on the up and up soon and the doctors are able to support you in this.2 weeks ago

                  • Elizabeth BenkertSafbham, I am so sorry to hear about how difficult the breathlessness is for you. I agree completely with Ksmiles123! If its possible, reach out to your doctors and see if you might be able to get an appointment sooner or perhaps they can refer you to additional support that is able to speak with you sooner. You're in my thoughts! Keep us posted please. 2 weeks ago

                  • KandySafbham do you have any kind of med for loosing the mucus. It helps to clear the airways you can breathe better. Mucinex is one otc to help with mucus. I do hypertonic saline 7% helps me a lot. They have different strengths 3% 9% also. I sure hope you feel better. Did you go to pulmonary rehab? They teach how to over come different things for your breathing as how to breath as with steps. 1 week ago

                  Made Pramana

                  Made PramanaI watched someone with bronchiectasis on his Youtube channel several days ago. He consumes extra virgin olive oil. I learned from the internet that extra virgin olive oil have some benefits. It also has many calories (which I really need). So I started to incorporate extra virgin olive oil into my diet. I'm happy.
                  Have a weekend everyone.

                  2 weeks ago

                  Vinny M

                  Vinny Mvoted on The Bronchiectasis and NTM Information Line is now open!

                  Gave a thumbs up for a blog post!

                  2 weeks ago

                  Vinny M

                  Vinny Mvoted on Why Weather can Worsen your Lung Condition

                  Gave a thumbs up for a blog post!

                  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.