BRigby

BRigbyasked the question: Anyone have a sputum sample that cultured Mucor?

Hello Trusted Friends, My lungs are colonized with MAC Avium, HIB, m. Abscessus has shown up a couple times, a little Aspergillus, and now my most recent culture grew out a fungus called Mucor. I have m. abscessus in my sinuses, too. The ID doctor …

1 hour ago

Gretchen

Gretchen

To all new members, Welcome to BronchandNTM360social. As we learned on the last Town Hall event with Dr. Daley, we all have a lot of unanswered questions. Is there something you need help in answering or do you have some experiences that could help someone else? Please share and inquire. If you are wondering about something related to Bronchiectasis and NTM, there is a good chance someone else is too.

To Answer a question, click on the Question you wish to view and then click on Add an Answer. A box will appear for you to type in your answer or experience. We have over 130 questions-share your knowledge!

If you wish to Ask a question, go to the left side of the screen under the Community Discussion menu.
• Click on Question and Answers.
• From here you will see Ask a Question.
• Click on it and you will be taken to a separate screen.
• Under Question, type in what you wish to ask and add in a brief description or any other comments under Description.
• There is a section named Tags. This will assist users in searching for information that involves your question, like Bronchiectasis, NTM, Quality of Life, Research, etc. You can add as many tags as you want. Make sure you add a comma between each individual tag.
• Finally, click on the orange box labeled ASK and it will be posted in the Activity Feed.

Welcome, again, to all the new members of the community. You will find valuable resources and supportive knowledgeable participants. Let us know what brought you.

14 hours ago

  • Ksmiles123Hello! Yes, there are answers to 130 questions previously posted, as Gretchen mentioned.
    I attempt to post relevant information to improve the quality of life for patients on the NTM journey.
    You are not alone! We are here to provide you with information, support, guidance.11 hours ago

  • Jane MartinThank you for the tutorial, Gretchen! :-)2 hours ago

Ksmiles123

Ksmiles123answered the question I feel like Crap !

Emcee, Yes, the fatigue and just not feeling well are very difficult to deal with. What point are you with medications? When did u see your doctor last Many of us have been in your shoes and have made it to the other side. Katie
EmeeKandy also answered the question Emeeand 1 other also answered the question

23 hours ago

mtldy35

mtldy35received the badge Getting started

Earned the Getting started badge!
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1 day ago

Ksmiles123

Ksmiles123https://bronchiectasisnewstoday.com/2019/02/21/lower-oxygen-levels-during-exercise-is-a-risk-factor-for-osteoporosis-in-non-cf-bronchiectasis-study-reports/?amp

1 day ago

    Ksmiles123

    Ksmiles123Hello! Have you striped complementary / alternative health therapies recently?https://www.webmd.com/balance/ss/slideshow-alternative-therapies

    2 days ago

      Ksmiles123

      Ksmiles123Hello! Do your medications make you nauseous? Below are a list of foods that may assist you.https://www.everydayhealth.com/digestive-health/diet/foods-that-help-relieve-nausea/?eh_uid=76390480&slot=0&xid=nl_EHNLwomenshealth_2019-03-22_16355681&utm_source=Newsletters&nl_key=nl_womens_health&utm_content=2019-03-22&utm_campaign=Womens_Health#sports-drinks

      3 days ago

      Gretchen

      GretchenThere is still time to register!! Learn about Research from our expert speakers, Dr. Yawn and Dr. Mularski, joined by patient Pam DeNardo. Research 101 will answer questions about what research involves, the different forms of research, as well as the questions you should ask before participating. Join us for an informal conversation on Thursday, March 21st, from 3-3:45 pm Eastern Time. We would love to have patients as well as family members and caregivers attend. Register with the following link for this free event so we know to expect you: https://attendee.gotowebinar.com/register/9081246262398293516

      4 days ago

      Gretchen

      Gretchen

      50 years of progress in Pulmonary Science. NIH Symposium: Join in-person or online to hear experts in pulmonary science discuss the progress and promise of lung disease research including lung imaging, clinical applications, and the history of lung disease research.
      April 9, 2019 | 1:00 p.m.– 4:00 p.m.

      https://www.nhlbi.nih.gov/events/2019/nih-symposium-50-years-progress-pulmonary-science

      4 days ago

        Mindyb77

        Mindyb77

        I had a bronchoscopy last month and my doctor discovered that the opening to my left lung is very small, likely has been since birth. I'm being sent to a larger hospital with an interventional pulmonlogist this Friday to discuss options.
        Has anyone ever experience this or heard of it? They can do a stent to open it up or a balloon dialation, possibly other things.
        I've gone thru the range of emotions, but I'm mostly mad that no one has ever found this before now. I'm 42 years old and have had issues most of my life.
        Likely do not have asthma, as I have been treated for this for years. Many unnecessary medications, infections. The bronchiectasis from all of that.
        I've thought seriously about filing medical malpractice, but I don't know if I would want the hassle of that.
        Sorry, just venting.

        5 days ago

        • Click to View All Comments5 comment(s) -
        • Mindyb77Thank you, Ladies! I appreciate and I know many of you understand the frustration of misdiagnosis, or uninformed doctors.
          I'm not 100% on this new specialist. He did give me lots of information. They took a bunch of blood to check for Wegener's? I've been out of town all weekend for my daugthers soccer games, so I'm just now reading up on that. He seemed to think I have several of the symptoms and it apparently could cause that narrowing of the airway.
          He is pretty certain a stent would not be possible due to the location of the narrowing. He says it's too close to the opening. Likely would do a balloon inflation or possibly burn away some of the tissue.11 hours ago

        • KandyNever heard of this but wish you the best in this.8 hours ago

        • Ksmiles123Mindy,
          Hello! Yes, I fully understand your frustrations of misdiagnosis and doctors who do not probe further nor research other possibilities when a patient does not fit in the typical box.
          Glad that you did your own research on Wegeners; I just reviewed it . I do not know anyone with this syndrome.
          I am sure that your u will listen to your gut instincts and get a 2nd opinion after you get the test results.
          I am wishing you the best case scenario. I have also been in your shoes w a young daughter while dealing with multiple misdiagnosis in the past; it is overwhelming, to say the very least. Please keep us posted.56 minutes ago

        Ksmiles123

        Ksmiles123https://www.aboutntm.com

        5 days ago

          Ksmiles123

          Ksmiles123

          Hello! Today is National Let’s Laugh Day! I realize that it is hard to think of laughing when you are not feeling well; however, hopefully, you can find a way since as the old cliche goes”laughter is the best medicine.”https://nationaldaycalendar.com/lets-laugh-day-march-19/

          6 days ago

          mauipixie

          mauipixie

          Aloha, i am a newbie, 62 was recently diagnosed with Bronchiectasis by CT with contrast. Have not seen a pulmonologist yet. There are only 2 on island and one takes my insurance. So know nothing about the conditions of my lungs. The radiologist that gave the report, said scarring from Valley Fever (lived in AZ early 1980s) is culprit. Only time I seem to cough anything up is when i recline or lie down. I had bronchitis in 2017, first time ever.

          I have my first Pulmo Dr appt on march 25. Hopefully he will give me some insight into my prognosis.

          I am horrible about asking questions

          Could you please give me some examples of questions to ask. Be specific
          Thank you

          1 week ago

          Ksmiles123

          Ksmiles123https://www.nutritionaction.com/daily/what-to-eat/hydration-101/

          1 week ago

            Ksmiles123

            Ksmiles123https://www.nutritionaction.com/daily/exercise-for-health/what-to-know-about-electrolyte-waters/

            1 week ago

            Ksmiles123

            Ksmiles123https://www.nutritionaction.com/daily/what-not-to-eat/what-can-alkaline-water-do-for-you/

            1 week ago

            Ksmiles123

            Ksmiles123Hello! Are you staying hydrated?https://www.nutritionaction.com/daily/what-not-to-eat/whats-in-your-water/

            1 week ago

            Ksmiles123

            Ksmiles123

            Hello! Happy Saint Patrick’s Day to all! May the good luck of the Irish be with all of us! I feel especially lucky this year since there are many new treatments in the pipeline 🍀☘️😀.

            1 week ago

            Kandy

            Kandyanswered the question Event Alert: A Discussion About NTM Lung Disease

            Where is the video please? Will check the group!!
            GretchenKristenKsmiles123and 1 other also answered the question Gretchenand 3 others also answered the question

            1 week ago

            Ksmiles123

            Ksmiles123Hello! Are you getting adequate protein on a daily basis?Protein assist our bodies in healing. Too often, patients grab high carbohydrate foods to boost their already lowered energy levels; these carbohydrates are short acting and can contribute to other medical issues. Hence, it is important to have a combination of protein with carbohydrates at every meal.https://www.choosemyplate.gov/protein-foods

            1 week ago

              Ksmiles123

              Ksmiles123https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3686605/

              1 week ago

                Ksmiles123

                Ksmiles123Hello! Are you practicing good infection control procedures?https://www.webmd.com/cold-and-flu/ss/slideshow-germs-office

                1 week ago

                Ksmiles123

                Ksmiles123

                Hello! Are you adequately hydrated while you are taking your medications? Water is the best source of hydration. The article below discusses the effects of caffeine on our bodies.
                https://www.healthline.com/nutrition/does-tea-dehydrate-you

                1 week ago

                Ksmiles123

                Ksmiles123https://www.webmd.com/cold-and-flu/cold-guide/10-immune-system-busters-boosters

                1 week ago

                  Kandy

                  Kandy

                  Hang on to your hat we got another snow storm coming freezing ran to snow 60 mph winds blizzard condtions starting tomarrow Wed to Friday morning maybe up to 12 inches snow on top the 70 inches we got total for this winter already This is not usual for us at all!!! Electricity may go out with this. Schools out here tomorrow 12:30 some already canceled for Wed. I am going to go to rehab it nothing is here by then.

                  1 week ago

                  Ksmiles123

                  Ksmiles123Hello! Do you have sleep challenges?https://www.webmd.com/sleep-disorders/ss/slideshow-sleep-disorders-overview

                  1 week ago

                    Gretchen

                    GretchenWant to Learn More About Research?
                    Sign up for the Research 101 Webinar for Patients and Caregivers!

                    Interested in what research involves? Want to learn about what you should ask before participating? Do you have questions about the different types of research? Interested in how you can participate?

                    If those questions sound familiar, and you would like to learn more about what participating means and how your experience can help us, then join us for an informal conversation on Thursday March 21st, from 3:00pm-3:45pm Eastern Time.

                    We would love to have COPD patients as well as family members and caregivers attend. Register here for this free event so we know to expect you: https://attendee.gotowebinar.com/register/9081246262398293516

                    2 weeks ago

                    Ksmiles123

                    Ksmiles123Hello! Do you understand the functions of your liver and the interpretation of the liver function lab tests?https://www.webmd.com/digestive-disorders/picture-of-the-liver

                    2 weeks ago

                      Ksmiles123

                      Ksmiles123answered the question dealing with side effects of rifampin

                      Merry, Yes, we can get used to the discolored urine.... we are safe as long as the liver enzymes stay within the normal range.
                      MerryJessicaMade Pramana also answered the question Merryand 2 others also answered the question

                      2 weeks ago

                      Ksmiles123

                      Ksmiles123Hello! Interesting article below.https://www.sciencedirect.com/science/article/pii/S2213007119300085

                      2 weeks ago

                        Kandy

                        Kandy

                        2 weeks ago

                        Ksmiles123

                        Ksmiles123Hello! Do you understand the link between inflammation and depression?Dietary choices can help lessen the inflammation.https://blog.paleohacks.com/inflammation-depression-connection/

                        2 weeks ago

                          Ksmiles123

                          Ksmiles123https://www.webmd.com/cold-and-flu/cold-guide/cold-prevention-hand-washing#1-3

                          2 weeks ago

                          Delia

                          DeliaDid you tune in to our event with Dr. Addrizzo-Harris, a pulmonologist and professor of medicine at NYU Langone Health, and Dariel, a nontuberculous mycobacterial (NTM) lung disease patient, about their experiences with the condition? Catch up on the conversation here: https://copdf.co/NTMLungDisease. This event was sponsored by Insmed Inc.

                          2 weeks ago

                          • KristenThis was excellent; thanks to all who worked to make it possible. I appreciated how straightforward the information was. I was thinking one way this might be particularly helpful for people with NTM would be as an education tool for friends and family -- it explained what is a confusing topic to some so very clearly.2 weeks ago

                          • KandyGot it thanks!! 1 week ago

                          • KandyI clicked said not available now.1 week ago

                          Ksmiles123

                          Ksmiles123commented onPatient & Caregiver Support

                           Yes, support means so much when one is dealing with a chronic disorder.- especially one that has a lot of ups and downs, good days and bad days. It is so important to reach out to the available supports currently available. As the old cliche, song...

                          2 weeks ago

                          Gretchen

                          Gretchencommented onPatient & Caregiver Support

                           Support for caregivers is extremely important. Thank you Amy Leitman for providing resources and tips to both caregivers and patients....

                          2 weeks ago

                          Gretchen

                          Gretchenvoted on Patient & Caregiver Support

                          Gave a thumbs up for a blog post!

                          2 weeks ago

                          Gretchen

                          Gretchenadded a new article Patient & Caregiver Support

                          This blog post was written by Amy Leitman, Director of Policy & Advocacy

                          As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

                          Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to...

                          2 weeks ago

                          Gretchen

                          Gretchen

                          On April 8th, 2019, the U.S. Food & Drug Administration will host a public workshop on the development of antibacterial drugs for the treatment of nontuberculous mycobacterial (NTM) infection. At this workshop, we will convey patient experiences and preferences for treatments and clinical trials.

                          Ahead of this workshop, we are asking you to please take 20-30 minutes of your time to complete a survey on this subject. The time you take today will help shape the development of tools that can be used in future clinical trials to advance the development of new therapies for NTM.

                          Please complete the survey no later than March 25th, 2019. After the data have been analyzed and presented at the FDA, we will publish a summary report on ntminfo.org.

                          As further details become available about the workshop, we will keep you informed.

                          Click here to take the survey or copy and paste this link into your browser: https://www.surveymonkey.com/r/NTMprosurvey

                          2 weeks ago

                            Ksmiles123

                            Ksmiles123Hello! Below is a list of the categories of antibiotics. https://1au3b422k9zdqzddw3my51gg-wpengine.netdna-ssl.com/wp-content/uploads/sites/7/2018/12/infe_af_3pt_r1018_1084.pdf

                            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.