MK

MKanswered the question Young age at diagnosis

I was diagnosed at 56.
Tim FosterBoulderiteand 5 others also answered the question and 7 others also answered the question

6 hours ago

MK

MKanswered the question Is anyone on PPI for GERD problems?

I will meet with the surgeon soon to discuss the options. It will be either the Nissen Fundoplicatio or the LINX procedure. I have been struggling with GERD for over 30 years and it has caused my Bronchiectasis condition and the resulting NTM infection. …
Ksmiles123Kandyoklawomanand 3 others also answered the question Ksmiles123and 5 others also answered the question

6 hours ago

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Smilerreceived the badge Getting started

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8 hours ago

Ksmiles123

Ksmiles123

Hello! Happy Monday! The temperature had definitely dropped and it has snowed in several areas over the weekend. Has the weather change impacted how you are feeling?

8 hours ago

  • GretchenIt snowed in Northern Virginia-about 2 inches. The temp has changed dramatically. Winter is here.7 hours ago

  • DeliaIt's been chilly here in Central Florida (hit 39 degrees this morning). It's refreshing for me considering we don't typically get much cold weather. Hope you all are staying warm!6 hours ago

  • KristenDelia that is really cold for you guys! When I lived in Florida and it would freeze people would use CD cases and credit cards to get the frost off their windshields. No one had brushes or scrapers. One of my fondest memories of living there. :)5 hours ago

Ksmiles123

Ksmiles123Hello! The link below provides access to articles related to NTM/Bronchiectasis.
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog

1 day ago

    Ksmiles123

    Ksmiles123https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers

    1 day ago

      Ksmiles123

      Ksmiles123http://www.caringvoice.org/tips-feeling-productive-low-energy/

      2 days ago

      • MerryvonThank you Ksmiles, for the tips. Like the advice to at least get started. Myself, I seem to think of a task as something I need to tackle the way I did when I was healthy and younger. Now before I even start, I think "ok, just take your time, go slow." Even though I may be moving in slow motion, I'm working on it. Of course I am not employed; although I'd like to be; at least part-time.18 hours ago

      • Ksmiles123Merryvon,
        Yes, we must approach tasks differently at this point in time. It is frustrating at times to have different energy levels ; however, we must continuously work on acceptance of what is.
        I often describe myself as a Type A in a Type C or D body.8 hours ago

      • GretchenThis is much needed. With the holidays upon us it is easy to feel overwhelmed and there is more to do than normal. One foot in front of the other and one thing at a time.7 hours ago

      Ksmiles123

      Ksmiles123Hello! The gift of HOPE- reading about new therapies in the pipeline.:)))http://ait-pharm.com/ntm/

      2 days ago

        Ksmiles123

        Ksmiles123https://symptoms.webmd.com/cold-flu-map/keep-immune-system-healthy

        2 days ago

          Ksmiles123

          Ksmiles123https://symptoms.webmd.com/cold-flu-map/keep-immune-system-healthy

          2 days ago

          • Kandy My daughter that is the RN ended up in hospital in ND she has Influenza A and she is asthmatic. Of course solumbedrol Ivs causing high sugar and as of this morning no dr has seen her they are swamped I guess Bismarck is full of Influneza A and SD last night news is way a head of last year so dont sound good.2 days ago

          • Ksmiles123Kandy,
            I am so sorry to hear the news on your daughter. I assemume that she will follow in your footsteps and advocate for herself at this point. I hope that she feels better real soon. Please keep us posted.1 day ago

          • MerryOh Kandy, your poor daughter! I hope you manage to avoid the bug. With holidays coming up, and people traveling/visiting, I suppose rates of flu will be increasing all over.1 day ago

          Merry

          Merry

          Yahoo! Just got an email from my pulmonologist (she is awesome, by the way). She had already checked today's CT and says "upper lobes are clearly better and there are no new nodules." I'm going to call that a win! I see her Wednesday and will find out if I am officially finished with the antibiotics yet.

          2 days ago

          Merryvon

          Merryvon

          Re: The telephone conference. A caller asked if cutting down on dairy products would help lessen mucus. Speaking for myself, I drinks lots of milk; I love it, and it seems to help me. It has calcium, Vitamin-D, protein and many other nutrients. I also eat yogurt and sometimes mix it with my milk for a drink. Yum! Guess it's an individual thing.

          3 days ago

          macivor

          macivor

          The Town Hall was very good. One person who called in mentioned using a bag she puts in the microwave to sterilize. What is that?

          3 days ago

          Delia

          Delia

          Thanks to everyone who was able to join us on the Town Hall teleconference yesterday! And a special thanks to our expert speaker, Dr. Kevin Winthrop! For those of you who were unable to join us, the teleconference was recorded and we will post it in the coming weeks. Additionally, we are in the process of planning part two of the teleconference series and we will announce the details once available. Wishing you all a wonderful weekend!

          3 days ago

          Kandy

          Kandyanswered the question What is the best way to get results from a nebulizer, using 7% hypertonic saline solution?

          Bob I tried to get my pulmo to give me the Tobramycin but all he said its expensive and your insurance wont pay for it so he gave me zpak to take 3 times a week.
          Bob ChufoMade Pramanajancookz also answered the question Bob Chufoand 2 others also answered the question

          3 days ago

          Merry

          Merry

          Back for a 6-month follow-up CT on Friday. I'm giving my lungs a pep-talk tonight to get ready for it.

          3 days ago

          Deenie

          Deenie

          Ok.
          Fatigue always present but manageable.
          Diagnosed bronchiectasis, MAI 20 years ago. (1997) Because I was coughing fresh blood.
          As disease poorly understood, until 2013 I was treated with Cipro and Azithromycin and at times Clarithromycin for recurring bronchitis or sinus.
          2013, received multiple immunizations in preparation for a humanitarian mission to Armenia which seemed to trigger serious flareup which no physician seemed to understand. (No physician was actively "following" me in regard to MAI or bronchiectasis.) Rather, my medical treatment and follow-up was geared to treat occasional respiratory or sinus infection.
          After receiving required immunizations to live in Armenia, my health began a downward spiral.
          My tongue turned bright yellow. I began violent coughing and felt exhausted.
          Eventually, a new CT was ordered which revealed multiple nodules, ground glass opacities and bronchiectasis.
          The treating physician believed I may have lung cancer and a second CT was ordered after 3 weeks which revealed additional new nodules.
          No physician had explanation for yellow tongue. Endoscopy and Colonoscopy were performed, ...all normal.
          I was anxious to be well. Sought second opinion. Was referred to an infectious diseases MD who prescribed Ethambutol, Mycobutin and Clarithromycin ....daily, started all together. Within 4 days I had terrible bone pain and a significant rash on my torso.
          Long story short.....: Too many meds all at once. I'm 5'1" weigh 119 and suspect my body couldn't handle the meds. After several attempts to stop and re-start meds, I was pronounced "failed" because my body will not tolerated the antibiotics.
          In early 2014, David Griffith, MD at University of Texas NE in Tyler, Texas hoped to have a physician at University of Utah Medical Center try IV desensitization to Ethambutol because the one antibiotic I have tolerated is Clarithromycin. He hoped to desensitize in order to a ...

          3 days ago

          SandyS

          SandyS

          I recently completed treatment for pulmonary MAC. I'm wondering about the likehood of a recurrence? I try to take the good advice that I read on these websites in order to stay well. It's just that every time I get a cold or start feeling sick I fear all these horrible bugs will come back.

          3 days ago

          • Ksmiles123Hello Sandy,
            It is only normal to have such fears. The reoccurrence rate is quite high; old estimates were 50%. However, patients are advised to do airway clearance, exercise, eat well , take infection control precautions including the flu and pneumococcal vaccination and to see your doctor quarterly to lessen the probability of reoccurrence.
            There are several blog articles, listed on the left side of this site which go into greater details.
            Please ask any other specific questions after reading the articles. I wish you the best!3 days ago

          • MerryI hear you, Sandy! I'm just waiting on the docs to say I am finished with treatment, and then I know I will immediately start to worry if/when the infection will return.

            Katie, have there been any more recent stats released? 3 days ago

          LoveBlue

          LoveBlue

          Has anyone had side effects from 7% hyper tonic saline solution vs. 3%. I feel like my esophagus is swollen and I have been using 7% 2 times a day for two months?

          4 days ago

          Kandy

          Kandy

          I loved the conference very good info. Thank you for doing this teleconference it was great!! We need more of these for people just do not have access to much about bronchiectasis. Very informative the time went so fast!!

          4 days ago

          • Click to View All Comments4 comment(s) -
          • KandyThis is great I know some missed it cause they were not aware of the time difference. I do have a support group myself and I love sharing all this info with them. Most my group is from UK do not know why if they just don't get alot of inof there. Since I took over the group from another I have had so many join. 3 days ago

          • MerryvonLoved the telephone conference! I've felt alone with this disease for a long time, but since discovering this online community, and now even "live" phone discussions...... it's great. : )3 days ago

          • Ksmiles123Merryvon,
            So happy to read your comments.:). Yes, you are not alone. Connection to others in similar shoes gives us strength to keep on going. We are all here to assist one another on this journey. We can control some aspects of this disorder, some we cannot. 3 days ago

          Brandon

          Brandon

          Thank you to the COPD Foundation and Dr Kevin Winthrop for the Bronchiectasis and NTM Town Hall Teleconference today! Very informative and some terrific questions answered by Dr Winthrop.

          4 days ago

          Kandy

          Kandyanswered the question I'm new to this community...learning about ntm

          Learn all you can you can live a good life with Bronchiectasis if you know the steps in handling it dealing with it helps alot.
          Ksmiles123 also answered the question Ksmiles123 also answered the question

          4 days ago

          Kandy

          Kandy

          On phone at this time for the Bronchiectasis and NTM Town Hall Teleconference!

          very good info.

          4 days ago

          DiannaM

          DiannaMvoted on FDA Hearing: Ciprofloxacin Inhalation Powder

          Gave a thumbs up for a blog post!

          4 days ago

          Made Pramana

          Made Pramana

          Feeling not very well. I had runny nose (yellow colour) since yesterday. I woke up this morning and felt a little bit warm in my body (eventhough the thermometer displayed normal range). I started to take the azithromycin this morning.
          I'm currently have some study sessions (school stuff) in the hospital. Wearing masks and wash my hands often.

          4 days ago

          Ksmiles123

          Ksmiles123https://www.rxlist.com/bronchitis_slideshow/article.htm

          4 days ago

            Ksmiles123

            Ksmiles123https://www.rxlist.com/common_cold_slideshow/article.htm

            4 days ago

              Ksmiles123

              Ksmiles123https://www.rxlist.com/12_causes_respiratory_infections_slideshow_picture/article.htm

              4 days ago

              Ksmiles123

              Ksmiles123https://www.rxlist.com/script/main/mobileart-rx.asp?articlekey=124074

              4 days ago

                Ksmiles123

                Ksmiles123Hello! Are you practicing breathing exercises, doing airway clearance? I know that it it is easy to fall in the non-compliant mode; however, preventive care is far better than treatment.
                https://bronchiectasisnewstoday.com/2017/10/30/breathing-exercises-help-bronchiectasis/

                5 days ago

                • Click to View All Comments11 comment(s) -
                • Ksmiles123Another paragraph taken from the link above:

                  Patients should also know that inhaling concentrated salts (hypertonic saline) has been proven to irritate the airways, causing cough and mucus, which can make asthma worse for some people.3 days ago

                • MerryvonKandy and Ksmiles, Probably will not try the salt cave/room. True about the hypertonic saline being a salt solution can be irritating. It was for me. My son knows a fellow who had a lot of respiratory problems and he got a job working on a ship in the ocean. His respiratory issues completely healed after several months; he felt it was due to the constant breathing of salt air. Maybe we could get a group and live on a ship in the ocean for a while. : )3 days ago

                • Ksmiles123Sounds good, lol. We can all get about the Good Ship Bronchiectasis for an experiment... I wish there was a guarantee that this or a similar therapy would help. What works for one may not work at all for another.
                  We just must hold onto HOPE that new therapies in the pipeline will truly improve the QOLife for many.2 days ago

                Ksmiles123

                Ksmiles123https://bronchiectasisnewstoday.com/2017/11/01/the-pathology-of-bronchiectasis-2/

                5 days ago

                  Ksmiles123

                  Ksmiles123

                  Hello! It is National Handwashing Awareness Week. The post below reviews food safety for immunocompromised patients.
                  https://www.fda.gov/Food/FoodborneIllnessContaminants/PeopleAtRisk/ucm312705.htm

                  5 days ago

                    Kristen

                    KristenInteresting article. Do you think incentives would help you adhere to your screening and treatment plans?

                    https://californiahealthline.org/news/dangling-a-carrot-for-patients-to-take-healthy-steps-does-it-work/

                    5 days ago

                    • Ksmiles123Kristin,
                      Interesting post. I feel that it all depends on the personalities of the individuals . Financial incentives, gift cards may not motivate some patients who cannot see beyond their present state of distress . 5 days ago

                    Kristen

                    KristenI'm so excited for Thursday's town hall teleconference! Is everyone signed up?

                    https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/58/Event-Alert-Bronchiectasis-and-NTM-Town-Hall-Teleconference

                    6 days ago

                    Kristen

                    Kristenvoted on Event Alert: Bronchiectasis and NTM Town Hall Teleconference

                    Gave a thumbs up for a blog post!

                    6 days ago

                    JD

                    JDvoted on Event Alert: Bronchiectasis and NTM Town Hall Teleconference

                    Gave a thumbs up for a blog post!

                    6 days ago

                    Ksmiles123

                    Ksmiles123Hello! It is important to plan our food choices for the upcoming holiday season. Discussing options ahead of time may lessen indulgence in foods which may aggravate reflux or other conditions.
                    http://www.cookinglight.com/christmas/survive-holiday-season-healthy-eating?utm_medium=email&utm_campaign=well-done&utm_source=cookinglight.com&utm_content=20171201

                    6 days ago

                    Ksmiles123

                    Ksmiles123

                    6 days ago

                    Kandy

                    Kandyvoted on Event Alert: Bronchiectasis and NTM Town Hall Teleconference

                    Gave a thumbs up for a blog post!

                    1 week ago

                    Ksmiles123

                    Ksmiles123https://www.webmd.com/a-to-z-guides/prevention-15/vaccines/rm-quiz-contagious-diseases

                    1 week ago

                      Merryvon

                      MerryvonI registered for the teletownhall conference Dec. 7, from 1:00 - 2:00 EST. Dr. Kevin Winthrop to speak on NTM, bronchiectasis, COPD, infections, etc... I'm so excited!

                      1 week ago

                      Debzb

                      Debzbasked the question: I'm new to this community...learning about ntm

                      My 30 year daughter has had a positive acid stain test. The culture is now growing to determine the species. She's had asthma since she was 2 years old. She's a newly graduated pharmacist and is so scared. I really don't know what to expect next ..?

                      1 week ago

                      Elizabeth Benkert

                      Elizabeth Benkert

                      Doing well today! Its a crisp Saturday in D.C. but fortunately the wind is minimal. It is sadly dark outside already though...but I have been enjoying the Holiday decorations which have been popping up promptly since 12am Nov. 24th.... :D

                      I'm giving a lot of thoughts to my Holiday plans at the end of the month, I'm not sure I'm up for a lot of travel this year.. So, I've managed to convince some of my East Coast family to head into D.C.!

                      I'm curious what others are doing? Anyone traveling for the holidays?

                      Cheers,
                      Elizabeth

                      1 week ago

                      • Click to View All Comments6 comment(s) -
                      • MerryvonYes, traveling can be exhausting, even when not driving. Last year got a flight to my daughters, and was sick the next two days from the stress of flying. 1 week ago

                      • GretchenI will be hosting for out of town in-laws...12 in all. I am exhausted just thinking about it! Tis the season! I think preparation will help to combat the fatigue and to just take it one day at a time. 1 week ago

                      • KandyWon't be traveling my one daughter is 2 hrs away comes here for the day we are celebrating on 24th we use my daughters church kitchen so its big and roomy we play games and excchange gifts for those that want to. Have a son that is very much scrooge. On 25th be at my daughters here in town for fun and games. All my 4 out of the 5 children live here in town. 1 week ago

                      Ksmiles123

                      Ksmiles123Hello! Happy Saturday! More resources on NTM.
                      https://www.aboutntm.com/

                      1 week ago

                        Delia

                        Delia

                        I’m happy to announce that we recently posted a new resource under the Bronchiectasis tab! The ATS has created a bronchiectasis information series, which covers basic information about bronchiectasis such as causes, symptoms, and lifestyle changes. Click the link below to check it out!

                        https://www.bronchiectasisandntminitiative.org/Bronchiectasis/Bronchiectasis-Resources/Bronchiectasis-Information-Series

                        1 week ago

                        • Click to View All Comments11 comment(s) -
                        • Ksmiles123Merryvon,
                          You are very welcome! Yes, I have had many challenges, to say the least. New therapies in the pipeline give me more hope.
                          In the interim, please take care of your stomach. Reflux and other GI issues can occur if you do not take care of your stomach from the very beginning. Little was know in this subject years ago. I plan on writing a book on this journey once things truly turn around for my family.1 week ago

                        • MerryvonThank you Ksmiles. You are very educated; like a doctor. You even plan to write a book. You have a customer. Been doing a little better the past few days. Making an effort to use the Airway Clearance Vest regularly; 2 x a day. I was slacking off. Your posts have been helpful.1 week ago

                        • Ksmiles123Merryvon,
                          Thank you so much for your very kind words. Yes, it is work to be compliant with doing all the daily tasks to keep as well as possible; however, it does pay off for most patients.1 week ago

                        Delia

                        Deliaanswered the question Any Information on upcoming world conference

                        Hi there! Hope all is well! Glad to hear that you're interested in attending! The 3rd World Bronchiectasis Conference will take place July 12 - 14, 2018 in Washington, DC. More details to come soon!

                        1 week ago

                        Ksmiles123

                        Ksmiles123Hello! Are you eating well? What a question...lol. I really sound like a mother...
                        The article below discussing how food affects our mood is very interesting. I find it very challenging to cook 3 meals when you are not feeling up to par. However, it is important to find a way- via large meal preparation and storage and or other modes of food preparation which require less energy.
                        http://www.psychiatryadvisor.com/mood-disorders/nutritional-psychiatry-emerging-evidence-expert-interview-felice-jacka/article/709691/2/

                        1 week ago

                          Elizabeth Benkert

                          Elizabeth Benkertvoted on Foliage and the Respiratory Patient

                          Gave a thumbs up for a blog post!

                          1 week ago

                          "She_looks_normal"asked the question: Any Information on upcoming world conference

                          Does anyone have any information on the 2018 World Conference? Like location, dates, when registration will open up, and where we might go to register(website)? We really would like to attend but need details now so we can save up for the trip.

                          1 week 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.