Ksmiles123

Ksmiles123

Hello! I wasn’t sure whether or not I should post the article below....; however, I thought it may serve as an incentive to take care of ourselves to the best of our abilities throughout the holidays. It is wise to see or speak with your MD as soon as new symptoms appear rather than waiting until symptoms get worse ending up in an ER. Let’s encourage one another to take all preventive measures possible during the winter months.

3 hours ago

Gretchen

Gretchen

Are you beginning to experience stress over the holiday season? It is the time of year when we tend to feel rushed and chaotic, burning the candle at both ends. How do you manage stress during the holidays? I try to take it moment to moment, doing the best I can with what I have-giving myself a break that I do not have to be superwoman! Here are some Holiday Stress Reducers. Share some of your own!
https://rootandrevel.com/ways-to-reduce-holiday-stress/

1 day ago

    Delia

    Deliaanswered the question Market Research Opportunity

    Hi all, just wanted to provide a quick update on this: BioTrak is still recruiting for this market research study in San Diego and Miami, but they have also just added a new site in Raleigh, NC. If interested in participating at any of these locations, …

    1 day ago

    Ksmiles123

    Ksmiles123Hello! Do you have any suggestions on how you have dealt with stress throughout the holidays?
    Holidays may bring an extra layer of stress to those who deal with everyday energy limitations ; the link below discusses how to say “ no!”.https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044494

    Stress relief: When and how to say no

    Stress relief: Discover the why, when and how of saying no to reduce stress.

    1 day ago

      Kandy

      KandyThought would share this.

      https://www.webmd.com/a-to-z-guides/news/20181210/brain-eating-amoeba-tied-to-tap-water-in-neti-pot?ecd=wnl_day_121118_ML1&ctr=wnl-day-121118-ML1_nsl-Bodymodule_hdln-2&mb=XHdZAF%2fwYX22qMMgJtVNEhXFE73IOX1c%2fGUEBUJS0AY%3d

      Brain-Eating Amoeba Tied to Tap Water in Neti Pot

      "She had not been boiling water, using sterile water or using sterile saline. She had been using water that had been put through a filter and maybe it had been sitting there and somehow the amoeba from somewhere else got in there. So that's what we suspect is the source of the infection," Cobbs …

      1 day ago

      Ksmiles123

      Ksmiles123answered the question MAC, Bronchiectasis and CPAP

      Hello! Instructions should come with the equipment. Yes, I would expect the instructions to suggest that you use distilled or boiled water. I have never used this equipment .Below is a site which may offer some helpful tips. https://www.sleepapnea …

      2 days ago

      Gretchen

      GretchenWe have heard a lot about the new therapy Arikayce in the last year. Here is information about how to get a prescription and about patient copay assistance:
      https://www.ntminfo.org/news/2018/11/34591/

      How Can I Get a Prescription for ARIKAYCE®? | NTM Info and Research Inc.

      Find out how to get ARIKAYCE prescribed for your pulmonary M avium complex NTM infection and copay assistance

      2 days ago

        sewcrazy64

        sewcrazy64asked the question: MAC, Bronchiectasis and CPAP

        I just learned I have sleep apnea and am being fitted with a CPAP. What do I need to know about using CPAP as it relates to my MAC and bronchiectasis? It seems like disinfecting may be a problem. I don't think CPAP mask, tubing, etc can be boiled like …

        3 days ago

        Turnbullg

        Turnbullgreceived the badge Getting started

        Earned the Getting started badge!
        TXRunningMomPetit ChouJan51and 1368 others also received the badge TXRunningMomand 1370 others also received the badge

        3 days ago

        Ksmiles123

        Ksmiles123Hello! I am posting the article below since many of you can relate to the frustrations you may have experienced when medical staff does not have a clue about NTM or other invisible disorders.
        Although, NTM presents a long list of challenges, I thank God that it is not one that includes chronic daily pain as described in the article below. https://themighty.com/2017/03/dercums-disease-hospital-experience/?utm_source=Mighty_Page&utm_medium=Facebook&fbclid=IwAR0kD88p_txnESFwRaPdlgU82Gt4cqagizzQmgmzFMpVaXsT0M_qqSkO6KI

        I'm Rare, and Hospital Staff Can't Relate

        A woman with a rare disease called Dercum's disease describes what it's like to go to the hospital when doctors assume you're searching for drugs.

        3 days ago

          TXRunningMom

          TXRunningMom

          Hello, I am glad to have found this site! I am newly diagnosed with Mycobacterium abscessus-chelonae complex and bronchiectasis. I am 47 and was training for my 4th marathon when I came crashing down with all this. As with everyone here I bet, I don't want to be part of the club but here I am anyway! :)
          My questions are about the decision to treat or not. My doctor says we would start out in the hospital for IVs, with a picc line at home for several weeks/months, and then 12 months of oral antibiotics once we get a negative culture. I really only have major fatigue and chest tightness as problems so far. He said I could wait and see how things go but if I develop any of the other symptoms like weight loss or night sweats, we should go ahead and start treatment.
          I know there is such as thing as the "new normal". But, is it possible to get back to life as it was if I go through the IV antibiotic treatments? Maybe not run marathons, but run a few miles atleast? On one hand, I want to go ahead and get this treated and be done. On the other hand, it is a pretty serious regimen so maybe I should just learn to deal with my current state of being (which is not running at all).
          Thoughts or advice on to treat or not to treat? I welcome any stories of people went ahead and treated and those who waited and then treated a few months later or maybe never.
          Thank you for your time and input!

          3 days ago

          • Click to View All Comments7 comment(s) -

          • rplasetHi TXRunningMom, my wife was also diagnosed with abscessus this past June, at 39 years old with two small children. So we can relate with world crashing down all of a sudden. We decided to treat aggressively and she was on the IV's within a month of diagnosis. Everyone is different, but I'm glad we went aggresive. She had an amazing follow up CT scan in September, negative culture from a bronchoscopy in October. She stayed on the IV's until Thanksgiving (so about 4.5-5 months - recently switched over to inhaled amikacin). I won't lie - it was rough at times - but ultimately it has made a world of a difference in my wife's lung health. 2 days ago

          • Ksmiles123TxRunningMom,
            You are welcome! Let us know if you have any other specific questions.

            Rplaset,
            Hello! So glad to hear that your wife is doing well. This disorder is an eye opener re: everyday life for sure.1 day ago

          • KandyWelcome TXRunningMOM to the group!!1 day ago

          Ksmiles123

          Ksmiles123https://www.webmd.com/eye-health/ss/slideshow-dry-eyes

          Slideshow: Dry Eyes and What You Can Do About Them

          Check out these things that make your eyes irritated and uncomfortable, and find out how to treat and prevent them.

          3 days ago

            Ksmiles123

            Ksmiles123answered the question I feel like Crap !

            Hello Sut, Welcome to the site. I agree wholeheartedly with Kandy re: wearing a mask, using antibacterial gels. Also, take extra vitamin C or Emergencees . Do you sleep with the head of the bed elevated?30 degrees? Multiple pillows? Do you take …
            Kandy also answered the question Kandy also answered the question

            5 days ago

            sut

            sutasked the question: I feel like Crap !

            I'm supposed to fly from SC to Denver on 12/20 for a week. My ritual is to go to bed around 10PM. As soon as I lay down I cough up phlem for a few minutes and then I can sleep for a while-usually. Then up at 7 and do my inhalers Then yogurt and coffee …

            6 days ago

            Ksmiles123

            Ksmiles123Hello ! I realize that the subject below is not one which people like to discuss; however, the link below provides an overview of common urinary tract issues .https://www.webmd.com/urinary-incontinence-oab/ss/slideshow-urine-your-health

            Slideshow: What Your Pee Can Tell You About Your Health

            Your pee -- you see it every day, and you might not think twice about it. Find out what it can tell you about your health.

            6 days ago

              Ksmiles123

              Ksmiles123answered the question Inspiring Words to Uplift a Mood?

              Hello! I agree wholeheartedly! Positive thinking keeps us out if the term “ the mud hole”, used frequently in psychology. Thinking negatively oonky makes things worse as difficult as some of our challenges may be. I strongly recommend reading a Norman …
              Brandon Bret99Cleeand 2 others also answered the question Brandon and 4 others also answered the question

              6 days ago

              Kandy

              Kandyanswered the question Does anyone use an AffloVest?

              I have Hil Rom didn't see any help either so packed it away. Well come Sept had a bronchoscopy and two pulmos told me to get it and use it. The copd coordinator gave me a med schedule to do and it sure does work. I have to first do levelalbuterol …
              Ksmiles123Made Pramana also answered the question Ksmiles123and 1 other also answered the question

              1 week ago

              Ksmiles123

              Ksmiles123https://www.webmd.com/parenting/speed-cleaning-germs

              Speed Cleaning to Kill Household Germs

              WebMD explains techniques for getting rid of household germs quickly.

              1 week ago

                Merry

                Merry

                Hi everybody! I've been so busy with work and medical appointments the past month I haven't had time for much else. Went for a bronchoscopy Nov. 6 to get a sample for the acid-fast test and culturing. Five days later I learned that the lab had accidentally thrown away my sample after doing the test for cancer cells (negative, of course) but BEFORE any of the tests that I really needed. My pulmo says she really "rinsed" out my lungs to get a really good sample and is worried if we bronch again too soon we won't get a valid sample. Meanwhile, if I don't get it redone before end of year, I'm faced with another $4,000 deductible. So many more recent health misadventures I could share, but I need to get to work. I hope things have been going better for all of you!

                1 week ago

                churlgurl

                churlgurl

                Newly diagnosed with mycobacteria avium complex and also note bronchietasis in my CT’s of lungs. Had lung surgery at end of June to remove portion of lung with mass. Tissue from surgery resulted in MAC diagnosis. This had been suspected for several years. Actually have had numerous lung nodules appear in 2011. Those have grown, increased in number, some of disappeared and new ones arrived. All this time my pulmonary doctor wanted to “just watch it”. Even after the mass arrived and needle biopsy was negative, she still wanted to just “watch it”. This all despite the fact that I have been so very sick for more than 4 years....35 lbs weight loss, no appetite, fatigue, lack of sleep, nausea and diarrhea so bad I could barely function some days. In response to all my symptoms she said “oh, that’s just subjective”, let’s just keep watching things. I did not take this response well. Long story short, a wondeful surgeon finally diagnosed me. I am now scheduled for a 10 day period at National Jewish Health in a few weeks. Anxiously awaiting this care from NJH as I believe my care up to this point has been atrocious. Anxious, stressed, and sick.

                1 week ago

                • Click to View All Comments4 comment(s) -

                • churlgurlStarted the process in July. Scheduled now at the end of December. However, I believe it took a little longer than usual due to the health care system here where I live being uncooperative and difficult. Delaying (took 2 months) sending my medical records to NJH.1 week ago

                • BarbfitUGH! I feel for you! I, too, had an irresponsible doctor (but not that bad) who prolonged my MAC which made my Bronch worse due to innappropriate care. What kind of doctor was she? Obviously didn't know enough about it. I ended up at Chapel Hill (a center of excellence) like NJH. You will get great care there. I wish you the best! 1 week ago

                • Ksmiles123Churlgirl,
                  Hello! Welcome to the site. I am so sorry to read about what you have been going through. Some doctors are quick to judge that it is just your “ subjective opinion “, not real....
                  Initially, my doc just thought it was stress since I was working full time and had just adopted a baby girl.
                  I pleaded with them to do PFTs... the rest is history.....
                  I am so glad that you will finally get the expertise that you truly deserve.
                  Hang in there in the interim. Please vent, keep us posted regularly. We are here to support one another.1 week ago

                Barbfit

                Barbfit

                Does anyone really know? After 4 years, I am MAC free - YEY!! However, it seems my Broncheictasis has worsened over these years. Lots of ongoing phlem, coughing (even with airway mainanence) and now I feel like since Bronch is permanent, "this is life". I am a personal trainer/coach and am out of a job. I didn't lose my job because of my illness but it's tough getting hired in my field when you can can't walk faster than 3.5 miles/hr. I just don't know what another year will bring. You hear so many different stories of bronchiectasis being insignifant in one's life to being debilitating and it's like no one knows where you will be on a spectrum. And there is always the exacerbation looming. I eat right, sleep well, and remain as active as I can. But I'm slowing down. I'm only 59! Does anyone else feel like the unknown can be the worst part?

                1 week ago

                • MerryI know what you mean, Barbfit. I feel like I haven't been able to make any plans past tomorrow for the past 15 years or more. On my good days, it seems like a good thing to be forced to live in the moment. On my bad days I get bitter and resentful when I hear of people planning vacations months or years out.1 week ago

                • BarbfitIt's also hard dealing with people. I had breast cancer last year (no worries, I'm fine). Everyone made such a big deal about it when, to me, it was insignifianct compared to the Bronch. I knew the cancer was contained and the lumpectomy and radiation was short term. There is such an awareness and empathy for it. This bronch.... people dont' understand it. "I thought you were doing great!" Well, that was last week....And I'm always questioning or blaming myself. Am I just being lazy? Is stress making it worse? Should I not pick up my grandchild at day care? It's really frustrating. Thanks for listening.1 week ago

                • Ksmiles123Barbfit,
                  I feel and empathize. I had been through a similar situation with a lumpectomy.
                  NTM is an invisible disorder for many. Some people think that it is “ in our heads”, that we are lazy, unmotivated- this is so far from the truth.
                  Most if the women I met in the NYC support group were strong, ambitious, powerful women- this disorder can turn your life totally upside down.
                  However, on the bright side- there are many preventive measures that one can take to minimize reinfections and to have a decent/good quality of life..
                  The purpose of this site is to share suggestions on how to do so.
                  Hang in there.1 week ago

                Ksmiles123

                Ksmiles123Hello! Have you been evaluated fir sleep apnea?
                https://www.webmd.com/sleep-disorders/sleep-apnea/ss/slideshow-myth-fact

                Slideshow: Sleep Apnea Myths

                Is it just snoring, or is it something more serious? WebMD sets the record straight on some myths and facts surrounding sleep apnea.

                1 week ago

                  Kristen

                  KristenSomething new from the COPD Foundation that you might find interesting!

                  COPD Across America: How does your state compare?
                  The COPD Foundation*, using data from the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System (BRFSS) as well as other sources, analyzed data for all states and created individual assessment cards focusing on ten key performance areas.

                  https://www.copdfoundation.org/What-is-COPD/Understanding-COPD/Statistics.aspx

                  How Common is COPD in the United States? | COPD Foundation

                  COPD affects an estimated 30 million individuals in the U.S. and our community stretches across all 50 states, and over half of them have symptoms and do not know it. Early screening can identify COPD before major loss of lung function occurs.

                  1 week 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.

                  1 week ago

                  Ksmiles123

                  Ksmiles123Hello! Do you have a specific stress management suggestion ?
                  A few of the suggestions below may appeal to some members.https://themighty.com/2017/11/inexpensive-ways-to-relieve-anxiety-mental-health-pain/

                  14 Ways to Release Anxiety Pain When You Can't Afford a Massage

                  The Mighty mental health community makes a list of 14 inexpensive ways to release and relieve anxiety pain when you can't afford a massage.

                  1 week ago

                  sewcrazy64

                  sewcrazy64asked the question: Does anyone use an AffloVest?

                  I nebulize 3% saline and use the Aerobika and huff cough twice a day. (I have also tried the Acapella.) I ride a stationary bike and walk on a treadmill for aerobic exercise. Even with all of this I’m not very successful with mucus clearing. My …

                  1 week ago

                  Ksmiles123

                  Ksmiles123https://www.aarp.org/money/scams-fraud/?intcmp=DBofferMON-Fraud_Watch_Network

                  Scam, Fraud Alerts - Protect Your Digital Identity

                  Get notified about the latest scams in your area and receive tips on how to protect yourself and your family with the AARP Fraud Watch Network.

                  1 week ago

                  Deltalady

                  Deltalady

                  Hi I was diagnosed with brochiectasis and ntm 2 years ago after coughing blood. I have 5 nodules in middle right lobe and 2 new nodules in left lobe after taking my yearly ct. Results noted cf like. Is it possible to have cf and not be diagnosed at age 60?

                  1 week ago

                  DK

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

                  Thank you so much for your reply. You are so right. One day I feel pretty good then the next day I feel breathless and tired. 9 weeks in now with the big three! So hoping that I will begin to feel better soon. This disease has certainly changed my life. …
                  Ksmiles123BarbfitQuizzieand 1 other also answered the question Ksmiles123and 3 others also answered the question

                  1 week ago

                  Cindi

                  Cindi

                  On my other bronch site people had NTM and got over it. I don’t understand if this site also covers this disease separately. Do some people not get over it? Cindi

                  1 week ago

                  • Ksmiles123Hello!
                    Welcome to the site.
                    Yes, many patients recover and do not relapse. However, statistics show that there is a high rate of reoccurrence.
                    We try to post preventative measures on this site to assist patients in preventing reoccurrence of MAC and other respiratory infections. We hope that you will review the 130 previously posted questions.1 week ago

                  Cindi

                  Cindicommented onPreventing Winter Exacerbations in Bronchiectasis and NTM Patients

                   Thank you for the information. Ksmile...

                  1 week ago

                  Kandy

                  Kandyvoted on Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

                  Gave a thumbs up for a blog post!

                  1 week ago

                  LJ Walsh

                  LJ Walshvoted on Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

                  Gave a thumbs up for a blog post!

                  1 week ago

                  liyahslola

                  liyahslolaanswered the question Bronchietasis and Nails

                  I do have clubbing.
                  CleeQueenHeleneKsmiles123and 2 others also answered the question Cleeand 4 others also answered the question

                  1 week ago

                  JD

                  JDvoted on Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

                  Gave a thumbs up for a blog post!

                  1 week ago

                  JD

                  JDvoted on Managing Stress with Bronchiectasis and NTM

                  Gave a thumbs up for a blog post!

                  1 week ago

                  Ksmiles123

                  Ksmiles123commented onPreventing Winter Exacerbations in Bronchiectasis and NTM Patients

                   Brandon, You are most welcome! Thank you for your kind words; I am glad that it was informative.:)...

                  1 week ago

                  Brandon

                  Brandon commented onPreventing Winter Exacerbations in Bronchiectasis and NTM Patients

                   Great tips with really good information with each of them, thank you for sharing! ...

                  1 week ago

                  Brandon

                  Brandon voted on Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

                  Gave a thumbs up for a blog post!

                  1 week ago

                  Brandon

                  Brandon voted on Managing Stress with Bronchiectasis and NTM

                  Gave a thumbs up for a blog post!

                  1 week ago

                  Kandy

                  Kandyvoted on Managing Stress with Bronchiectasis and NTM

                  Gave a thumbs up for a blog post!

                  1 week ago

                  tgibsonart

                  tgibsonart

                  I’m better but breathless with any walking. I joined today and have questions about what I’m feeling. I’ve been trying to breathe for 2.5 years and after a week plus at NJH in Denver I have been handed a handful of diagnoses. I want to live, breathe and reverse or prevent worsening. I’m a nurse and a pretty good self advocate. Still, I don’t know what to do.

                  2 weeks ago

                  • tgibsonartI thought I’d be able to list my other dx on my profile but I can’t.
                    I have adult onset asthma (4/2016), allergies, Tracheobronchomalacia, bronchiectasis, mild gerd, moderate esophageal dysmotility, VCD. 2 weeks ago

                  • Ksmiles123Hello! Welcome to the site. I hope this site can assist you in preventing further issues and to live the best quality of life possible.
                    It is overwhelming to receive many diagnoses. I am also a nurse and was overwhelmed when first diagnosed with NTM/HP 16 years ago. I had never heard of these diagnoses; Very little literature was available on this subject at that time.
                    There are 130 answers to questions on this site re: Bronchiectasis, GERD. Let us know if you have specific questions.
                    You are not alone. We are here to assist you.2 weeks ago

                  • Kandywelcome to our group!!1 week ago

                  LJ Walsh

                  LJ Walshvoted on Managing Stress with Bronchiectasis and NTM

                  Gave a thumbs up for a blog post!

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123commented onPreventing Winter Exacerbations in Bronchiectasis and NTM Patients

                   Laurie,Thank you for your kind words. Yes, so few fully understand since many of us have this “ invisible disorder “. We must educate others and protect ourselves. Best wishes for you to keep as well as you can this winter....

                  2 weeks ago

                  Laurie

                  Lauriecommented onPreventing Winter Exacerbations in Bronchiectasis and NTM Patients

                   Thank you for this concise article with the information of why we need to be cautious. It is difficult for people to understand why when we appear normal. ...

                  2 weeks ago

                  Linda Mullin

                  Linda Mullin

                  Norman Vincent Peale, author - minister - and founder of Guideposts, was a true believer in positive thinking. One of his books titled: The Power of Positive Thinking, continues to inspire through his legacy.
                  I've enjoyed going back to this basic logic through the years. I may not be able to control or change a permanent diagnosis, but I can be upbeat in how I choose to view the outcome.
                  Looking toward the light in life creates a better auroa than focusing on the dark negative. Minus thoughts weigh a person down and take you further down that lonely spiral.

                  For me, I want to stay positive!

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123commented onManaging Stress with Bronchiectasis and NTM

                   Jane,Thank you for your great article .We all must continue to work on how we deal with stress since we will continue to face many stressors while living with a chronic disorder.I love the new response column . I must admit that this illness has...

                  2 weeks ago

                  Vinny M

                  Vinny Mvoted on Managing Stress with Bronchiectasis and NTM

                  Gave a thumbs up for a blog post!

                  2 weeks ago

                  redhead

                  redheadasked the question: Has anyone tried Buteyko?

                  The main idea behind controlling your breathing with Buteyko is that many people over-breath. I have found some success with this for Bronchiectasis. It take lots of practice, but it seems harmless and it's free.

                  2 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.