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3 hours ago

Bmblebee

Bmblebeeasked the question: colistin and insurance problems

My doctor is recommending that I try colistin inhaled. My insurance will not cover and my 6 months of treatment will cost around $25,000. The doctor's request for an exemption was denied so the cost will be totally out of pocket. Has anyone else had a …

19 hours ago

Wendy

Wendyanswered the question NTM Treatment

My pulmonary doctor is against the treatment because of the harshness of the drugs and my adverse reaction to every drug I as much as look at. I also have aspergillus requiring anti-fungals. These drugs are no picnic either. I've been avoiding treatments …
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 day ago

Gigi50

Gigi50

Hello All! I am new to this site and looking for a lot of information. I was diagnosed with NTM with mild Bronchiectasis this past February. I am going to National Jewish Health Center Monday, June 25th for more testing. I'm hoping I get more answers there as to my treatment plan. I am 55 years old and all I'm hearing is I'm too young to have this. A lot of the information out there is contradicting, so I'm a bit confused about all of this. Am I correct in that the NTM can be cured, but not the Bronchiectasis? Just call me confused!

1 day ago

Gigi50

Gigi50voted on Event Alert: An Introduction to Bronchiectasis & NTM Webinar

Gave a thumbs up for a blog post!

1 day ago

Delia

Deliacommented onJoin the FDA Public Workshop on Inhaled Therapies for Bronchiectasis

 Hi all, leading up to this workshop, we would like to ask your help so that the patient preferences come across loud and clear in open discussions. Please help us build on the information gathered last year and provide answers to a few questions by...

2 days 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.

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.

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.

2 days ago

    MAV

    MAV

    I went to National Jewish at the request of family and found out I have MAI. I was told to come back and they would start infusions of the antibiotics (plan on 5 days). I am not symptomatic at this time, so hopefully that is positive; but I am concerned with the possible side effects (not many seem to escape them). Since I am traveling from the Kansas City area (short flight/ but long drive), do I dare arrange air transportation? or do I drive? Any advise?
    Thanks

    2 days ago

    • Ksmiles123Mav,
      Hello! I wish that I had the exact answer for you. It is best to ask the nurse at National Jewish about the side effects from the specific IV antibiotics. Patients respond differently to treatment.
      The ventilation is not the best on airplanes. This time of the year is better than the winter, in the midst of peak flu season.
      You may be concerned with stomach issues from the antibiotics. The drive may be long but you may have options to stop more frequently as needed and you do not have to deal with being there 2 hours prior and dealing with airport security .
      Let’s see how other members respond. Please keep us posted.2 days ago

    Bret99

    Bret99

    Very informative webinar today!

    2 days ago

    Marcia

    Marciavoted on Event Alert: An Introduction to Bronchiectasis & NTM Webinar

    Gave a thumbs up for a blog post!

    2 days ago

    eQ Lin

    eQ Lin

    I'm a bronchiectasis with NTM patient who is currently under antibiotics treatment. I have an outdoor hot tub. I'm using it about everyday by wearing a n95 mask. Is this ok or I should just avoid it outright? I'm also taking shower everyday. I use bleach (Clorox) to clean the outside of shower head once a week. Can this be effective?

    2 days ago

    • Ksmiles123Hello! Welcome to the site.
      Outdoor hot ribs do not pose as high as a risk as indoor hot tubs; however, you never know and I personally avoid taking the risks.
      I had been on the cocktail of the 3 meds twice and will do everything in my power to avoid going back on the drugs.
      Re: shower head. The biofilm is in the inside of the shower head . There are mixed views whether or not to avoid showers.
      Please have the bathroom well ventilated if you do continue taking showers.2 days ago

    Marcia

    Marcia

    I can't find the webinar that is presenting now. Help!!

    2 days ago

    • GretchenMarcia, do you have the Reminder email that was sent out yesterday and one today. There is a URL link included to enter the webinar. Also, here is the conference line to call in:
      Dial in via phone: 877-658-9248,
      Conference ID: 5577158
      Let me know if you are able to get on!2 days ago

    Kandy

    Kandy

    HI Gretchen I cant find where I registered for this webinar can you send me something? I dont know why I keep loosing this. I thought I had it but looked thru my emails. I be at pulmonary rehab till 11:00 and I think the webinar for me is noon. Can you send me something to get into the webinar. I tired registering again said I already am. Thanks Kandy

    3 days ago

    Ksmiles123

    Ksmiles123

    Hello! Tomorrow is the first day of summer. What is the most difficult part of summer for you?
    Please be careful being in the sun when on antibiotics. I recall burning like a lobster years ago while on cipro. Please read antibiotic inserts and or ask your doctor or pharmacist? What is your favorite part about summer?
    Please share your thoughts with the group. We are all here to assist one another in improving our quality of life.

    3 days ago

      Gretchen

      GretchenI am looking forward to the webinar today, An Introduction into Bronchiectasis and NTM today at 1pm. If you haven't registered there is still time! We have a lot to learn from our expert speaker Dr. Charles Daley of National Jewish Health. Hope you can join.

      https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/74/Event-Alert-An-Introduction-into-Bronchiectasis-NTM-Webinar

      3 days ago

        Brandon

        Brandon voted on Event Alert: An Introduction to Bronchiectasis & NTM Webinar

        Gave a thumbs up for a blog post!

        3 days ago

        Ksmiles123

        Ksmiles123https://www.aboutntm.com/?utm_medium=cpc&utm_source=bing&utm_campaign=2017_ub_dtc_ntmunbrandedpatient_condition%20-%20ntm&utm_term=ntmfacts&utm_content=ntm%20-%20info_exact

        4 days ago

          Ksmiles123

          Ksmiles123Hello! The link below reviews how alcohol may get in the way of healing.https://www.webmd.com/mental-health/addiction/ss/slideshow-alcohol-body-effects

          4 days ago

            Ksmiles123

            Ksmiles123Hello! I realize the topic below may not sound interesting to some; however, the information is important.https://www.webmd.com/urinary-incontinence-oab/ss/slideshow-urine-your-health

            5 days ago

              Kandy

              KandyThis came up in my e-mail today. Thought should post this.

              https://bronchiectasisnewstoday.com/2018/06/14/impaired-bacterial-death-by-neutrophils-may-explain-chronic-bronchiectasis-infections/?utm_source=BRO+E-mail+List&utm_campaign=e480a3b901-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-e480a3b901-71479961

              5 days ago

              Ksmiles123

              Ksmiles123https://www.medicalnewstoday.com/articles/321164.php

              6 days ago

                Ksmiles123

                Ksmiles123

                Hello! Happy Father’s, Godfathers, Grandfathers, to be fathers and all other who partake in a fathering role in some capacity. May you have a pleasant weekend. Thank you for all you do for others.

                6 days ago

                  Made Pramana

                  Made Pramanaanswered the question How do you handle public coughing and spitting?

                  Hi shardan1. I also have this condition too. So many mucus; during group discussion, walking around, etc. I carry tissues along the way. I prefer to cough and release mucus in an empty bathroom to be honest. I don't want to try to hold back the cough (I …
                  Ksmiles123 also answered the question Ksmiles123 also answered the question

                  1 week ago

                  Gretchen

                  Gretchenanswered the question Any positive stories/tips on successfully managing m. abscesses with bronchiectasis?

                  Rplaset, Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis. I am so glad that your wife was diagnosed early. In the interim, Please ask any …
                  Ksmiles123Lindylea peaand 3 others also answered the question Ksmiles123and 5 others also answered the question

                  1 week ago

                  Wendy

                  Wendyasked the question: NTM Treatment

                  It is appearing more and more likely that MAI treatment is necessary and can no longer be avoided. How is it administered? Are these pills taken at home or an intravenous application? How often if intravenous? Or is it different for each individual?

                  1 week ago

                  Wendy

                  Wendyanswered the question Saline Solution Therapy?

                  Kandy, I'm still fighting with Medicare/Medicaid to get it. It's a step at a time. I have coverage at this time but only with a prescription for nebulizer albuterol. The fight continues but I do think it will be covered with persistence. You need to ask …
                  KandyQuizzieKsmiles123and 2 others also answered the question Kandyand 4 others also answered the question

                  1 week ago

                  Kandy

                  Kandy

                  I am kind of excited I was asked to be on the board for Dakota Wesleyn University Repiatory RT Degree board as a copd patient. Be video chat a few times a year.

                  1 week ago

                  Ksmiles123

                  Ksmiles123answered the question Are any of you taking the Big 3 medications now? Are you able to tolerate them? If not, what are the

                  Barbfit, Four years is a long time. What is the treatment plan? When will you have a drug holiday
                  BarbfitQuizzieDi also answered the question Barbfitand 2 others also answered the question

                  1 week ago

                  Ksmiles123

                  Ksmiles123https://www.psychiatryadvisor.com/james-murrough-md-Below is an interesting article on treatment resistant depression.
                  phd/section/8127/?utm_source=newsletter&utm_medium=email&utm_campaign=pa-ate-native-2-may&dl=0&DCMP=OTC-pa-ate-native-2-may&spMailingID=19738031&spUserID=MjQ1MzUxNDg1MjMwS0&spJobID=1280769021&spReportId=MTI4MDc2OTAyMQS2

                  1 week ago

                    Kandy

                    Kandyvoted on Event Alert: An Introduction into Bronchiectasis & NTM Webinar

                    Gave a thumbs up for a blog post!

                    1 week ago

                    shardan1

                    shardan1asked the question: How do you handle public coughing and spitting?

                    I cough and spit out mucus a lot. Sometimes this will happen when I'm out, say in a store or restaurant. I try to cough/spit into a tissue as discreetly as possible, but it is pretty gross. Any suggestions?

                    1 week ago

                    Abbie

                    Abbievoted on Event Alert: An Introduction into Bronchiectasis & NTM Webinar

                    Gave a thumbs up for a blog post!

                    1 week ago

                    Gretchen

                    GretchenWhether you have been recently diagnosed or have lived with bronchiectasis for years, it is always a good reminder to check back in and come back to the basics: what to avoid, what to eat, where to look for help and the importance of support. Read more of the 6 Tips to help manage:

                    https://bronchiectasisnewstoday.com/2017/02/09/six-tips-for-managing-bronchiectasis/

                    1 week ago

                      Ksmiles123

                      Ksmiles123answered the question What is pseudomonas? Has anyone experienced pseudomonas? If so, what was the treatment?

                      Dee, Anything that will lessen the chance of infection and staying off antibiotics is a huge gift!!! Thank you for sharing your words.:
                      DeeQuizzieSafbham and 1 other also answered the question Deeand 3 others also answered the question

                      1 week ago

                      Dee

                      Deeanswered the question Cause(s) of Bronchiectasis

                      It was listed as a cause of death on my grandmother's death certificate and she died 80 yeas ago. Also believed my aunt had it. So, I have been told I inherited it.
                      BudoklawomanLainey301and 6 others also answered the question Budand 8 others also answered the question

                      1 week ago

                      Gretchen

                      GretchenSummer doesn't officially arrive until June 21st but I think many of us are already experiencing legitimate summer weather! The humidity comes and goes but when its in full force, I am sure you feel its impact. One of our patient advocates wrote a blog last summer discussing the Challenges of Summer and I think it would be great to revisit these great tips and helpful reminders!

                      https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/53/The-Challenges-of-Summer-for-Respiratory-Patients

                      1 week ago

                        Ksmiles123

                        Ksmiles123https://www.everydayhealth.com/gerd/symptoms/whats-difference-between-acid-reflux-gerd/

                        1 week ago

                          Ksmiles123

                          Ksmiles123Hello! The link below offers suggestions for the treatment of GERD.
                          https://www.everydayhealth.com/gerd/guide/treatment/?xid=nl_EHNLdigestive_2018-06-13

                          1 week ago

                            Gretchen

                            Gretchen

                            Do you find your symptoms better or worse or about the same through the summer months? For those of you who experience worsening due to heat and humidity are there tips that make you more comfortable?

                            1 week ago

                              Ksmiles123

                              Ksmiles123answered the question Please help!!!!

                              Hello! Have you found other centers? Below is the link for CF centers. Perhaps, your local CF center can guide you. https://www.cff.org/Care-Centers/Find-a-CF-Care-Center/ Please let us know how you are doing

                              1 week ago

                              Brandon

                              Brandon voted on Join the FDA Public Workshop on Inhaled Therapies for Bronchiectasis

                              Gave a thumbs up for a blog post!

                              1 week ago

                              Ksmiles123

                              Ksmiles123Yay!!! I have been awaiting relevant articles , such as the one below on QOL for many years. I initiated one on QOL and NTM way back in 2006. Please post any other articles on QOL which you come across. Articles , such as the one below give the community a better understanding of what patients with rare diseases deal with on a daily basis.
                              https://bronchiectasisnewstoday.com/2018/05/29/erdc2018-dont-overlook-quality-of-life-issues-key-in-treating-rare-disease-patients-panel-says/?utm_source=BRO+E-mail+List&utm_campaign=e54fce30e7-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-e54fce30e7-71803537

                              1 week ago

                              Ksmiles123

                              Ksmiles123https://www.phoenixhelix.com/2018/06/08/what-are-digestive-enzymes-and-when-do-you-need-them/

                              1 week ago

                                Ksmiles123

                                Ksmiles123Hello! Another company with drugs in the pipeline. There is hope!!!https://savarapharma.com/development/pipeline/

                                1 week ago

                                  "She_looks_normal"asked the question: Please help!!!!

                                  Does anyone happen to have a list of pulmonologist's that specialize in Non-cf cystic Bronchiectasis in infants and pediatrics in the United States?? I am battling our insurance company over a denial for her to travel from Texas to Colorado for 10 day …

                                  1 week ago

                                  Vinny M

                                  Vinny Mvoted on Join the FDA Public Workshop on Inhaled Therapies for Bronchiectasis

                                  Gave a thumbs up for a blog post!

                                  1 week ago

                                  Ksmiles123

                                  Ksmiles123https://positivepsychologyprogram.com/resilience-training-build-resilient-individuals-groups/

                                  2 weeks ago

                                    Ksmiles123

                                    Ksmiles123

                                    Hello! Below is a link for a course on emotions, produced by the Museum of Happiness in the UK. Yes, we all have challenges to bear; it is up to us to have hope and to be positive. So many new treatments are in the pipeline.https://www.eventbrite.co.uk/e/understanding-emotions-three-week-course-tickets-45786851706

                                    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.