Made Pramana

Made PramanaMy old article on The Mighty got featured in their Facebook Page.🙈
https://m.facebook.com/story.php?story_fbid=1943313392427230&id=947493782009201&_rdr

Rare Disease on The Mighty

"It takes a lot of energy to live with a chronic illness, especially when it progresses."

8 hours ago

    Ksmiles123

    Ksmiles123answered the question Traveling

    Sut, You are most welcome! You don’t have to wear the mask constantly If no one around you is coughing or showing any cold, flu symptoms ; it is always wise to be safe rather than sorry. Enjoy the trip!:
    sutKandy also answered the question sutand 1 other also answered the question

    15 hours ago

    Skippy

    Skippyreceived the badge Getting started

    Earned the Getting started badge!
    TishCopper23wylieriderand 1338 others also received the badge Tishand 1340 others also received the badge

    1 day ago

    Ksmiles123

    Ksmiles123

    2 days ago

    Ksmiles123

    Ksmiles123

    2 days ago

    Made Pramana

    Made Pramana

    Hello. Have a nice weekend!
    I read about how to calculate calorie requirement with using some formulas and I used the formula to calculate my calorie needs. It's about Basal Metabolic Rate and Resting Energy Expenditure. I took account of the strees factor as well. I think my calorie needs are around 2700 cal. I need to eat more because I usually consume less than that.

    3 days ago

    Ksmiles123

    Ksmiles123Hello! Have you ever experienced tendinitis from taking antibiotics?
    https://www.webmd.com/arthritis/ss/slideshow-overview-tendinitis

    Slideshow: A Visual Guide to Tendinitis

    If your tendons get irritated and swollen, you might have tendinitis. Learn the symptoms and find out how you can prevent and treat the condition.

    3 days ago

      Ksmiles123

      Ksmiles123answered the question Bronchietasis and Nails

      Hello! I am so sorry to read of your issues with your nails. I have heard of others getting infections in nail salons, but not to this degree Thank you for sharing this with the group.
      klKandy also answered the question kland 1 other also answered the question

      4 days ago

      Gretchen

      GretchenThe COPD Foundation recently held an informative webinar on Hope and Inspiration Through Goal Setting on November 1. For those of you who were unable to attend, we invite you to view the recorded webinar: https://register.gotowebinar.com/recording/4230860665062897159
      and slides: https://copd.egnyte.com/dl/BHbuKF26fA. The slides are a large file so must be downloaded.

      4 days ago

        Yooj

        Yooj

        Hi everyone! I am a biomedical engineering student at Columbia University working on a project to design a more efficient airway clearance device/technique. In your opinion, what features would an ideal airway clearance device/technique have?

        5 days ago

        BRigby

        BRigby

        Hello Everyone! I hope you are all choosing to make it as good a day as possible. I am a little bummed today but trying to remember to "count it all joy" through various trials. I was diagnosed with Bronch & MAC in my lungs 2 years ago, but today results from Stanford labs read, "many white blood cells" in the sputum from the base of my lungs, and now NTM abscessus in my lungs. : ( I already have NTM abscessus, MRSA, & acintobacter baumaniiin my sinuses, but we were hoping and praying the abscessus wouldn't get to my lungs. And now it has. It's a bit of a shock since I'm currently fairly asympotomatic (working full time, enjoying the grand kids, exercising, etc.), just very tired. I'd love to hear from some of you that have both MAC and abscessus in your lungs, and if there's anyone out there with CRS (sinus disease) like me? I'm scheduled for a final sinus surgery at Stanford in January....now wondering if the lung doc will want to start me on Big 3 treatment? Or maybe a Bronchoscopy? Trying to not let my mind jump ahead while I wait to hear from the doctor. Thanks for providing this sharing site as a place to vent to others who understand while I wait. Days like this it really helps. God Bless & keep you all! Brenda

        6 days ago

        • Click to View All Comments7 comment(s) -

        • Ksmiles123Rplaset,
          Hello! Great to hear from you. So very glad to hear that your wife is doing well. Thank you for sharing “ hope” with others.:)5 days ago

        • GretchenRplaset, Thank you for sharing encouragement. It is so easy to go down the rabbit hole of despair. I am happy to hear how well your wife is doing! She is lucky to have a compassionate caregiver in you.4 days ago

        • BRigby@rplaset, THANK YOU so much for taking time to respond to my post and offer encouragement. I am so very sorry to hear about your wife at only 39 years of age being diagnosed with this stubborn disease! You must be an incredible care giver. I am so glad to hear your wife has improved with treatment! Let's stay in touch.7 hours ago

        sut

        sutasked the question: Traveling

        I have Bronchiectasis and I am supposed to go to Denver for Christmas. I have not traveled on a plane since I came down with this. I'm wondering if going to Denver for a week is such a good idea. I cough a lot and after my inhalers I cough up Phlem. …

        6 days ago

        Delia

        Deliaasked the question: Market Research Opportunity

        Hi all, BioTrak Research is seeking individuals diagnosed with bronchiectasis to participate in an in-person, 30-minute market research study session. During the study session, participants will be asked to perform a task for dose preparation of a new …

        6 days ago

        Ksmiles123

        Ksmiles123https://themighty.com/2016/10/finding-support-when-living-with-a-chronic-rare-illness/

        Why You Should Befriend a Person Who Shares Your Same Illness

        A woman with erythromelalgia, a rare condition, shares why it's important to befriend others with your illness.

        6 days ago

          Ksmiles123

          Ksmiles123https://www.arikayce.com

          Now Approved ARIKAYCE (amikacin liposome inhalation suspension)

          Learn more about ARIKAYCE (amikacin liposome inhalation suspension). See Prescribing and Safety Information.

          6 days ago

          Gretchen

          GretchenWe all struggle with commitments and energy conservation. Sometimes we just have to take care of ourselves.

          1 week ago

          Ksmiles123

          Ksmiles123Hello ! Do you know the signs of dehydration?https://www.everydayhealth.com/news/unusual-signs-of-dehydration/?slot=0&xid=nl_EHNLhealthyliving_2018-11-06&utm_source=Newsletters&utm_content=2018-11-06&utm_campaign=Healthy_Living&eh_uid=76390480

          6 Unusual Signs of Dehydration You Should Know About

          Dehydration can lead to a bad mood, cravings for sweets, headache, and even fever. To catch dehydration early and reverse it, look for these warning signs and symptoms.

          1 week ago

            ncares

            ncaresSpero Therapeutics Announces Positive Results from SPR720 IND-Enabling Studies and Plans to Initiate a Phase 1 Trial

            Spero Therapeutics announced results from preclinical IND-enabling studies of SPR720, an oral antimicrobial agent being developed for the treatment of pulmonary non-tuberculous mycobacterial (NTM) infections. The preclinical in vitro and in vivo toxicology studies demonstrate that SPR720 achieved wide therapeutic margins and activity versus multiple clinically important species of non-tuberculous mycobacteria, which Spero believes supports its advancement into human clinical trials.

            http://www.tradershuddle.com/2018/11/05/spero-therapeutics-announces-positive-results-from-spr720-ind-enabling-studies-and-plans-to-initiate-a-phase-1-trial/

            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

            Kandy

            Kandyhttps://cysticfibrosisnewstoday.com/2018/10/10/bicarbonate-eyed-as-weapon-to-combat-2-most-prevalent-bacteria-cystic-fibrosis/?utm_content=buffer08275&utm_medium=organic+social&utm_source=facebook.com&utm_campaign=buffer

            Bicarbonate Eyed as Weapon to Combat 2 Most Prevalent Bacteria in CF

            Learn about how bicarbonate impaired the growth of Pseudomonas aeruginosa�and Staphylococcus aureus bacteria, common in cystic fibrosis.

            1 week ago

            Ksmiles123

            Ksmiles123https://www.healthline.com/nutrition/electrolytes

            Electrolytes: Definition, Functions, Imbalance and Sources

            Electrolytes are minerals that are involved in many essential processes in your body. This article takes a detailed look at electrolytes, their functions, the risk of imbalance and possible sources.

            1 week ago

              Ksmiles123

              Ksmiles123Hello! Do you have any suggestions on sleeping well? Several of the tips below apply to Bronchiectasis/ NTM patients.
              https://www.healthline.com/nutrition/17-tips-to-sleep-better#section18

              17 Proven Tips to Sleep Better at Night

              This article lists 17 evidence-based tips to sleep better at night. Getting good sleep is very important for optimal health.

              1 week ago

                Ksmiles123

                Ksmiles123Hello! Do you understand the results of routine blood tests?https://www.webmd.com/a-to-z-guides/rm-quiz-blood-tests

                Quiz: What Blood Tests Can (and Can’t) Tell You

                Blood tests can tell you all kinds of things about your health. Find out how much you know about them with this quiz.

                1 week ago

                  Red1

                  Red1

                  Hi Everyone! My name is Marilyn. I am a Caregiver, my spouse has COPD. I have worked on the COPD Foundation Information Line since 2011. I find it a true honor to speak with and assist patients and caregivers.
                  Five simple words can help make a world of difference to someone. "How can I help you?" Simple as that. Know that we are there to do just that. We educate, offer educational materials, research resources available to further aid patients and caregivers and most often, we just listen. And sometimes that may be all the help needed on that call.
                  I am very proud of my role and services to the COPD community and even more proud to work along side and with my fellow Team Leaders and Associates. We look forward to hearing from you!

                  1 week ago

                  Ksmiles123

                  Ksmiles123Hello! Some of the examples in the article below may apply to Bronchiectasis/NTM patients. Please share with a family member or friend who may not understand what it is like when you simply cannot “ push through “.https://themighty.com/2018/05/why-people-with-chronic-illness-cant-simply-push-through/

                  Why People With Chronic Illness Can't Simply 'Push Through'

                  Alicia Thompson explains why people with chronic illness can't "just do it" or simply "push through" something.

                  1 week ago

                    Gretchen

                    GretchenIt is important to set goals, as a patient and in life. Join tomorrow for an important webinar: COPD Awareness Month will be on Friday, November 1st from 2:00pm-3:00pm EST. This webinar will be on patient focused goal setting! Please join us for a lively conversation with two of our respiratory therapists on staff, Stephanie Williams and Jane Martin! To register and learn more information, click here: https://attendee.gotowebinar.com/register/8800034066023593731

                    1 week ago

                    Jv537

                    Jv537

                    Feeling fine . Just got an accapella after a official diagnosis.got my flu shot and pneumonia shots so I am ready for the winter

                    2 weeks ago

                    Ksmiles123

                    Ksmiles123Hello! Pulse oximetry is a 4th vital sign for many respiratory patients. It is advisable to kee track of your own oxygen levels, especially on bad days. You can purchase one if these devices on amazon for approximately $20.00.
                    https://www.thoracic.org/patients/patient-resources/resources/pulse-oximetry.pdf

                    2 weeks ago

                      Ksmiles123

                      Ksmiles123Hello! Do you own a pulse oximeter ?
                      https://www.healthline.com/health/pulse-oximetry

                      Pulse Oximetry: Uses, Readings, and How It Works

                      Learn about pulse oximetry, including how it works, when it may be used, and what the results mean.

                      2 weeks ago

                      Brandon

                      Brandon

                      It's only 24 days until Thanksgiving, have you had your Flu shot yet?

                      It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against influenza virus infection. Be safe and talk with your doctor or pharmacist to learn more.

                      2 weeks ago

                      Made Pramana

                      Made Pramanahttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415114/

                      Extrapulmonary features of bronchiectasis: muscle function, exercise capacity, fatigue, and health status

                      There are limited number of studies investigating extrapulmonary manifestations of bronchiectasis. The purpose of this study was to compare peripheral muscle function, exercise capacity, fatigue, and health status between patients with bronchiectasis ...

                      2 weeks ago

                        CCFL

                        CCFL

                        No energy can’t get up today.
                        I have a question is it important to find out what kind of Multifocal infection due to atypical mycobacterial disease
                        You have? I have done the sputum test but I don’t have a productive cough and even doing the induced sputum test nothing shows up. When they did the bronchoscope I had 1 colony aspergillus they removed I guess from a mucus plug. Does anyone else have this problem and does it really matter?

                        2 weeks ago

                        • Click to View All Comments6 comment(s) -

                        • CCFLThank you for the information but where do I get the information? The NTM information on this site? I need to call or fill out application.. is that what you are talking about? I could go to either Miami or Jacksonville I live in between. Is there a list of support groups on this website? I’m sorry to keep bothering you but I do appreciate the information.

                          Thanks again 2 weeks ago

                        • Ksmiles123You are most welcome! No worries, you are not a bother. We need information when we need information. Support goes a long way when dealing with a chronic disorder. See link below.
                          https://www.ntminfo.org/support-groups/2 weeks ago

                        • GretchenWelcome CCFL, we are here to help and find answers to questions you may have. I know a lot of patients do not have access to doctors who are well informed about all things Bronchiectasis and/or NTM. We do our best to find the info for you or for other patients to share experiences they have had that may be valuable to you. Let us know how you are doing and if there is anything else we can do.2 weeks ago

                        Ksmiles123

                        Ksmiles123

                        Hello! Happy Friday! How are you feeling since the weather is getting cooler?

                        2 weeks ago

                        Ksmiles123

                        Ksmiles123Hello! There are different classifications of drugs used for NTM/ Bronchiectasis. Below is a list of the macrolides. It is important to keep track which drugs agree with you and which do not. One drug may wreak havoc in one patients body and do nothing to another patient. I will post the other classifications periodically. Knowledge is power and will assist you in improving the quality of one’s life.
                        https://www.drugs.com/drug-class/macrolides.html

                        List of Macrolides - Drugs.com

                        Compare macrolides. View important safety information, ratings, user reviews, popularity and more...

                        2 weeks ago

                          Tracie Sullivan COPDF Staff

                          Tracie Sullivan COPDF StaffCheck out this interesting article on the incremental shuttle walk test!


                          https://bronchiectasisnewstoday.com/2018/10/18/incremental-shuttle-walk-test-valid-measure-bronchiectasis-therapy-response-study/?utm_source=BRO+E-mail+List&utm_campaign=7380c7174c-RSS_WEEKLY_EMAIL_CAMPAIGN_US&utm_medium=email&utm_term=0_d9df0e1c03-7380c7174c-72008673

                          For Bronchiectasis Therapy Response, Walk Test a Valid Tool, Study Finds

                          A study finds that the incremental shuttle walk test can serve as a valid tool in clinical trials to measure response to bronchiectasis therapies.

                          2 weeks ago

                          Gretchen

                          GretchenIt is National Respiratory Care Week! We are recognizing and honoring the respiratory therapists that make a huge difference in the lives of patients with lung diseases. Have you had experiences with RTs? Share a story or the impact you have experienced because of an RTs contribution.

                          http://www.scotlandcountyhospital.com/Articles/national_respiratory_care_week.aspx

                          Scotland County Hospital

                          Scotland County Hospital's (SCH) Cardiopulmonary (heart & lungs) Department is the healthcare discipline that specializes in the promotion of optimum cardiopulmonary function and health, plus relief for your asthma, treatment for COPD and other respiratory & lung illnesses. �Respiratory Therapists …

                          2 weeks ago

                            Ksmiles123

                            Ksmiles123https://www.webmd.com/cold-and-flu/ss/slideshow-flu-symptoms-treatment

                            Slideshow: Do I Have the Flu?

                            Asking if you have the flu? This slideshow helps you understand the flu virus, its symptoms, types of influenza and flu treatments.

                            2 weeks ago

                              Ksmiles123

                              Ksmiles123https://www.webmd.com/food-recipes/food-poisoning/news/20181017/drug-resistant-salmonella-hits-dozens-across-us?ecd=wnl_spr_102318&ctr=wnl-spr-102318_nsl-ftn_1&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

                              Drug-resistant Salmonella Hits Dozens Across U.S.

                              The agency is not yet advising consumers to stop eating chicken but urges anyone who does to make sure it is properly cooked. Illnesses began in January, and the most recent case was confirmed in September.

                              3 weeks ago

                                Ksmiles123

                                Ksmiles123

                                Hello! What is your personality type?
                                Interesting article below describes how our personality may affect our health.

                                3 weeks ago

                                Tracie Sullivan COPDF Staff

                                Tracie Sullivan COPDF Staffanswered the question Getting to Know You...

                                Hi All, My name is Tracie, and I work at the COPD Foundation in the DC office on grassroots advocacy, and engage with our volunteers! Favorite place is a tough one, I love being outdoors, and any chance I get to hike, and camp I am there :) This year I …
                                Ksmiles123MerryAnissaand 12 others also answered the question Ksmiles123and 14 others also answered the question

                                3 weeks ago

                                Tracie Sullivan COPDF Staff

                                Tracie Sullivan COPDF StaffThis week begins with Respiratory Therapy appreciation week! Thank you to all of the RT's in our community and State Captain Program, who work tirelessly and selflessly with us, and for the COPD community! We appreciate you! To learn more about the week events, and activities going on, check out the American Association for Respiratory Care's website here: http://www.aarc.org/resources/programs-projects/respiratory-care-week/

                                Respiratory Care Week 2018 - AARC

                                Join AARC Oct. 21-27 as we celebrate Respiratory Care Week, recognize the respiratory care profession, and raise awareness for improving lung health.

                                3 weeks ago

                                Ksmiles123

                                Ksmiles123Hello! Do you take supplements? It is difficult to determine which supplements are really worth purchasing. Can you recommend a supplement that has helped you?https://www.webmd.com/vitamins-and-supplements/news/20181012/fda-unapproved-ingredients-in-many-supplements

                                FDA: Unapproved Ingredients in Many Supplements

                                Many dietary supplements, especially those promising enhanced sexual pleasure or weight loss, contain unapproved and potentially dangerous ingredients, the FDA says.

                                3 weeks ago

                                  Ksmiles123

                                  Ksmiles123

                                  https://www.businessinsider.com/amazon-patent-alexa-emotional-Hello! Interesting what Alexa will be able to do in the near future.
                                  intelligence-2018-10?IR=T&utm_source=Triggermail&utm_medium=email&utm_campaign=BII%20Weekender%202018.10.19%20-%20Marketing&utm_term=BII%20Marketing%20%28Engaged%2C%20Active%2C%20Passive%2C%20Disengaged%2C%20New%29%20Active%20Suppression

                                  3 weeks ago

                                    Ksmiles123

                                    Ksmiles123Hello! I thought I would follow up from yesterday’s posting by others on the differences between being alone and lonely.https://www.mindbodygreen.com/0-5804/The-Difference-Between-Lonely-and-Alone.html

                                    The Difference Between 'Lonely' and 'Alone'

                                    Recently I read Joy by Osho and was completely blown away by every page, every sentence, every word and every letter. Through his book, I found so many subjects worth sharing with everyone in my life, but more importantly with myself. It seemed every part of his book I could relate to immediately.

                                    3 weeks ago

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                                    About NTM

                                    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.