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1 day ago

Peg

Peg

I'm fine. I was diagnosed with Bronchiecstasis in 2016. I was wondering if I should take a walk outdoors this morning. There is very little wind today, or would it be safer to walk inside at our local mall? I am taking Qvar 80, 2 puffs in the morning and 2 puffs at night. I take Singular at night. From what I understand, I should take these every day, even when I am feeling better?

1 day ago

  • Ksmiles123Hello Peg,
    Welcome to the site. The humidity often makes patients more fatigued . Mycobacterium thrive is extreme humid conditions. However, it varies from individual to individual.
    I limit my stay outdoors in the very humid weather; I don’t think it is worth taking a chance if not feeling well.
    Perhaps, a little time outdoors may be ok for you to see the sunshine. A walk through a cool mall sounds relaxing.
    Enjoy your day!:))1 day ago

Ksmiles123

Ksmiles123

Hello! Happy Memorial Day weekend to all! Was hoping for beautiful spring like weather this weekend. However, the heat and humidity have risen. It is important to take necessary precautions in the extreme humid conditions. Enjoy your weekend.

1 day ago

    Ksmiles123

    Ksmiles123https://www.healthline.com/nutrition/vitamin-c-deficiency-symptoms?utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=authoritynutrition&utm_content=2018-05-25#section17

    2 days ago

      Ksmiles123

      Ksmiles123Hello! A few surprises in the link below.
      https://www.webmd.com/vitamins-and-supplements/ss/slideshow-herbs-supplements-avoid?ecd=wnl_spr_052418&ctr=wnl-spr-052418_nsl-promo-v_3&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

      3 days ago

        Delia

        Deliahttps://worldbronch.com/patient-session/

        The 3rd World Bronchiectasis Conference is taking place on July 12 - 14 in Washington, DC this year! The Conference is a focused, cutting-edge gathering of the world’s experts on bronchiectasis and NTM lung infections. We are happy to announce that there will be a patient session on the afternoon of July 14th. The session will navigate the management and treatment options available for bronchiectasis and NTM patients. If you are interested in attending in-person, click the link above to find more information including the program agenda and registration information. We are also happy to announce that this program will be recorded and made into a video series for BronchandNTM360social, so do not despair if you are unable to attend!

        3 days ago

        Gretchen

        GretchenNutrition is always on our minds insofar as our food choices healing or harming any condition. Here is some food for thought about dark-pigmented fruit and the benefits towards lung function.

        http://www.rtmagazine.com/2018/05/flavonoids-fruits-may-slow-age-related-decline-lung-function/

        4 days ago

        Gretchen

        GretchenResearch helps to discover and develop new therapies and treatments for diseases. This is great news for NTM and other respiratory conditions that the American Thoracic Society Foundation has awarded money for such investigation.

        https://bronchiectasisnewstoday.com/2018/04/17/insmed-research-award-created-for-non-tuberculous-mycobacteria-lung-disease/?utm_source=BRO+E-mail+List&utm_campaign=c9dec9cf1b-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-c9dec9cf1b-72008673

        5 days ago

          Ksmiles123

          Ksmiles123Hello! The link below reviews healthy protein choices.
          https://www.choosemyplate.gov/protein-foods-nutrients-health

          5 days ago

            Ksmiles123

            Ksmiles123https://www.webmd.com/depression/find-happy-17/slideshow-depression-diet-stress-exercise

            5 days ago

              Tracie Sullivan COPDF Staff

              Tracie Sullivan COPDF Staffhttps://www.youtube.com/watch?v=wYq0vI_k2fQ


              New video I created for this week- What is a Congressional Caucus? What does a caucus do? Why are they important?

              6 days ago

              Ksmiles123

              Ksmiles123Hello! Are your allergies bothering you? https://www.healthline.com/health-news/2018-allergy-season-expected-to-be-bad#8

              6 days ago

                Ksmiles123

                Ksmiles123https://www.nutritionaction.com/daily/dietary-supplements/probiotics-101/

                1 week ago

                Ksmiles123

                Ksmiles123Hello! It is good to review the manual below periodically to fully understand the NTM . Knowledge is power! It is easier to set goals, take action steps once we fully understand what we are dealing with. Do you have any questions after reviewing the patient pamphlet?
                https://www.ntminfo.org/insight-patient-pamphlet/

                1 week ago

                  Ksmiles123

                  Ksmiles123

                  Hello! The volcanoes in HW are a major concern for patients with respiratory issues. I sincerely hope that patients have the masks, protection needed.

                  1 week ago

                    Gretchen

                    Gretchen

                    The Voice of the Patient-Dr. Olivier from NHLBI is discussing the voice of the patient from a past FDA conference. He is speaking to the 3 symptoms that patients said had the most impact on their daily life:

                    Coughing
                    Fatigue
                    Shortness of Breath

                    Do you have another symptom that you would add to this list and want to share with doctors and researchers? They are listening to the patient voice!

                    1 week ago

                    Ksmiles123

                    Ksmiles123commented onNTM Lung Disease & Exercise

                     Welcome Pam,It is so great to read that you are feeling better after many years.Was there one specific herb that made you feel better?Many patients spend so much money seeking ways to improve their quality of life and end up frustrated, feeling that...

                    1 week ago

                    pamelawayans100

                    pamelawayans100commented onNTM Lung Disease & Exercise

                     I have had ASTHMA my whole life but about 7 years ago my asthma got so bad and was diagnosed of EMPHYSEMA/COPD which was most likely due to the asthma. I was on double antibiotics and steroids, still didn't feel any better. My lungs were constantly...

                    1 week ago

                    Ksmiles123

                    Ksmiles123Hello! Below is a link which provides information on disability. I hope that it is helpful for those going through the process of applying for disability benefits.
                    https://www.ssdrc.com/

                    1 week ago

                      Ksmiles123

                      Ksmiles123http://maxhealthok634.info/bronchiectasis-symptoms-causes-treatment-prevention/5/

                      1 week ago

                        Gretchen

                        GretchenLeaving for La Jolla today and looking forward to the NTM & Bronchiectasis Physician/Patient conference. Anyone else attending? As patients, what 3 topics/areas of your disease do you want addressed? Let us hear your voice and perspective.

                        There will be an overview of epidemiology, pathogenesis, diagnosis, management and treatment of nontuberculous mycobacterial (NTM) lung disease and bronchiectasis. The hope is to increase awareness of these conditions and advances in treatment options in order to improve patient care.

                        Where: The Estancia La Jolla Hotel
                        When: Thursday, May 17, 2018
                        Time: 7:30am-5pm PDT
                        Who should attend: Designed for patients, caregivers and healthcare professionals who treat NTM, bronchiectasis and related comorbidities.


                        http://events.r20.constantcontact.com/register/event?oeidk=a07ef3pq52v1635c8e0&llr=qd7oz5bab&showPage=true

                        1 week ago

                        Libby

                        Libby

                        Learning ins and outs and yuks of all these new meds. Really worn out and trying to breath sucks.

                        1 week ago

                        Ksmiles123

                        Ksmiles123answered the question Saline Solution Therapy?

                        Hello! I use 7% NS when feeling congested. I do not use it everyday. Mucinex in the am assist me on a daily basis. All patients respond differently to treatments.....it is great that we have this venue to share what works for ourselves with one another.
                        KandyBRigbySeniorexpat also answered the question Kandyand 2 others also answered the question

                        1 week ago

                        Ksmiles123

                        Ksmiles123Hello! Many interesting facts in the link below on seasonal allergies. I post information on allergies since many patients have both allergies and NTM/bronchiectasis. It is important to learn to differentiate symptoms and to treat accordingly.
                        https://www.medicinenet.com/seasonal_allergies_myths_facts/article.htm?ecd=mnl_spc_042018

                        1 week ago

                          Gretchen

                          Gretchenvoted on Applying for Disability Benefits

                          Gave a thumbs up for a blog post!

                          1 week ago

                          Ksmiles123

                          Ksmiles123

                          Hello! To all the moms, grandmoms, godmoms, moms to be, caretakers, nurturers and anyone who fulfills the role of a mother- may you have a peaceful, enjoyable day.
                          Please let us know what information you need to assist you on this journey.

                          2 weeks ago

                            Ksmiles123

                            Ksmiles123https://copd.net/living/lessons-mom/?utm_source=weekly&utm_medium=email&utm_campaign=180510-subscriber&uuid=35dc309ef24682e618a426a7804543f5&utm_confid=sovi058ao&aGVhbHRoIHVuaW9uIGJsYWg=924d79c69cb0ef2215d78d57dacb9c60d630c815eabf59aa07b232677324d12e

                            2 weeks ago

                            DanteV

                            DanteV

                            2 weeks ago

                            Ksmiles123

                            Ksmiles123https://themighty.com/2018/04/gifts-from-chronic-illness/

                            2 weeks ago

                              Ksmiles123

                              Ksmiles123Hello! Many family members and friends do not understand our often invisible disorder. Many can relate to the article below-the article below is not written by a patients with NTM.https://themighty.com/2018/04/pots-invisible-illness-judgment/

                              2 weeks ago

                                Ksmiles123

                                Ksmiles123https://themighty.com/2018/04/help-daily-anxiety-what-to-do-quick-change/

                                2 weeks ago

                                  Kandy

                                  Kandy

                                  2 weeks ago

                                  Gretchen

                                  GretchenThank you Brandon! Yes-to all the women, mothers or not, who have cared for and inspired a child. You are honored.

                                  My daughter, Harper and I-she joined me for a mother/daughter yoga class.

                                  2 weeks ago

                                  Brandon

                                  Brandon

                                  Wishing all of the mother's in our community a very happy and special Mother's Day!

                                  2 weeks ago

                                  • Ksmiles123Brandon,
                                    Thank you sooo much!!!
                                    Here’s to all the moms out there who have NTM/ bronchiectasis- especially with young children.
                                    Your child will inspire you to keep up the fight. There are many new treatment options in the pipeline.
                                    This may be a super challenging time if you are going through the big 3 medication treatment- you must believe that you will get to the other side.2 weeks ago

                                  Bret99

                                  Bret99I came across this great article on how much protein we need on a daily basis. Valuable information!

                                  http://www.eatingwell.com/article/290496/this-is-how-much-protein-you-need-to-eat-every-day/?did=237333-20180413&utm_campaign=ew_nosh_041318&utm_source=etg-newsletter&utm_medium=email&cid=237333&mid=12545595864

                                  2 weeks ago

                                  Ksmiles123

                                  Ksmiles123https://www.cdc.gov/grand-rounds/index.html

                                  2 weeks ago

                                    Gretchen

                                    Gretchenasked the question: Saline Solution Therapy?

                                    Does anyone have experience with Saline Solution Therapy? If so, how often do you do it? Is it on a daily basis? Have you had any positive or adverse effects?

                                    2 weeks ago

                                    Gretchen

                                    Gretchen

                                    Meet the experts at “Living Well and Lung Health.”

                                    Are you planning on attending the American Thoracic Society (ATS) conference in San Diego May 18-May 23rd? The ATS Public Advisory Roundtable (PAR) is taking place on Saturday, May 19th from 10:00am to 2:00pm at the Manchester Grand Hyatt Hotel.

                                    This patient/family forum will include experts discussing NTM, Cystic Fibrosis, Allergy/Asthma and Scleroderma, to name a few. For any questions, contact Mr. Courtney White at 212-315-8640 or email cwhite@thoracic.org

                                    2 weeks ago

                                      Gretchen

                                      Gretchen

                                      An exciting announcement that our partners at Oregon Health & Science University were funded for a multicenter randomized pragmatic clinical trial comparing two versus three antibiotic therapy for pulmonary Mycobacterium avium complex disease. The target for enrollment start is spring 2019, though that could change, with all sites up and running by summer 2019. Next steps are contract negotiations and project planning. We are excited to see this begin and what the results will be. We will keep you updated on this Patient-Centered Outcomes Research Institute (PCORI) grant and clinical trial.

                                      2 weeks ago

                                      • Ksmiles123Gretchen,
                                        Thank you for the update. Sooo happy to read that this research is being done. More patients will be able to tolerate 2 vs 3 if this study proves to be successful.2 weeks ago

                                      • BRigbyGretchen, thank you so much for this information! I am very interested in learning more about this. I have MAC avium in my lungs and NTM abscessus (and MRSA) in my sinuses.1 week ago

                                      Ksmiles123

                                      Ksmiles123

                                      Hello! Spring weather is finally here.
                                      Each season has its pros and cons for respiratory patients. Many of us do not touch a garden do to fears of Mycobacteria. Many patients are afflicted with allergies.
                                      What is your favorite and least favorite part of springtime?

                                      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.