Ksmiles123

Ksmiles123https://www.everydayhealth.com/hs/asthma/eosinophilic-asthma-action-plan/?slot=0&xid=nl_EHNLasthmaallergies_2018-09-20&utm_source=Newsletters&utm_content=2018-09-20&utm_campaign=Asthma%20and%20Allergies&eh_uid=76390480

13 hours ago

Ksmiles123

Ksmiles123Hello! Have you been diagnosed with asthma as well? I know of Several NTM patients who have been diagnosed with both; the symptoms overlap.
https://www.everydayhealth.com/hs/asthma/surprising-reasons-asthma-is-uncontrolled/

13 hours ago

    Merry

    Merry

    Popping in to say hi and hope you are all hanging in there. Follow-up CT coming this month--fingers crossed there's nothing new to see! I do not miss those antibiotics. :)

    23 hours ago

    Merry

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

    I agree that Levofloxacin is a bear. Thankfully I didn't have a tendon tear, but the joint pain was not fun. Probably good I didn't know about the depression and hypoglycemia during the 15 months I took it!
    Ksmiles123Kandyliyahslolaand 4 others also answered the question Ksmiles123and 6 others also answered the question

    23 hours ago

    Merry

    Merryanswered the question NTM and lung cancer

    Hi kfs52, I'm afraid I'm not a lung cancer/NTM person, just NTM. Yes, the treatment made me very tired in the first 8-10 months, then I slowly started getting more energy as the lung infection began to clear. I still had annoying side effects from the …
    Ksmiles123kfs52 also answered the question Ksmiles123and 1 other also answered the question

    1 day ago

    steph922

    steph922received the badge Getting started

    Earned the Getting started badge!
    Webbiekfs52Tomkatand 1295 others also received the badge Webbieand 1297 others also received the badge

    1 day ago

    Gretchen

    GretchenIf you have NTM, check out this important message from our partners at NTMiR.

    http://myemail.constantcontact.com/ACTION-ALERT--Urge-FDA-to-Approve-Inhaled-Liposomal-Amikacin.html?soid=1101618704496&aid=KUAPQuxhp30

    2 days ago

    kfs52

    kfs52asked the question: NTM and lung cancer

    Is there anyone here that got NTM after having chemo/radiation for lung cancer? I am trying to make sense of what NTM is, why the treatment makes me so tired and what I can do to get past the tiredness. Any advice?

    2 days ago

    Ksmiles123

    Ksmiles123Hello! Are you doing airway clearance on a daily basis?https://www.ncbi.nlm.nih.gov/m/pubmed/26591003/?i=5&from=/30215383/related

    2 days ago

      Tomkat

      Tomkat

      Interesting to see how many have bronchiectasis? I’ve had this disease for over 40 years. I’m now 56 still kicking... lol 😆... first time I’ve actually researched this.

      2 days ago

      Tomkat

      Tomkat

      Excited to find a support group for bronchiectasis!

      2 days ago

        Kandy

        Kandy

        Was in the hospital a week in ND with 3 ivs of antibiotics. Zpak only one I knew. Did a bronchoscopy and thank God nothing was found. They tested every which way. No NTM none. I had a lot of inflammation they sucked out.
        Today was first day back to rehab. Feel weak yet so very tired you know you don't sleep in hospital with solumedrol and being woke up every minute. haha Came home with side affects of the anitbiotics diarrhea and a big yeast infection. If its one thing its another!!

        3 days ago

        Gretchen

        Gretchen

        How are people infected by NTM?
        Aerosolized droplets from:
        Showers and Water Taps
        Hot tubs, Spas, Pools
        Aerosols from Humidifiers
        HVAC Systems with Humidifiers
        Dusts from Potting Soils
        Aspiration (gastric reflux)

        3 days ago

        Ksmiles123

        Ksmiles123https://www.verywellhealth.com/overnight-oximetry-is-a-commonly-used-screening-test-3015119

        3 days ago

        • Click to View All Comments5 comment(s) -
        • Made PramanaHi Kandy. I read on the COPD360Social about your situation to find the oxygen concentrator. Hope you can find a way to get it.2 days ago

        • Ksmiles123Kandy,
          Your active lifestyle, perseverance is inspirational to all. It is so sad that some patients give up being active due to oxygen concerns. 2 days ago

        • KandyI was going to rant about what my PCP did Tuesday follow up after hospital stay but I think I won't. I am still so very disappointed in my dr.
          Made I am going to rent a simply go from Lincare for 2 weeks to see if that is going to work for me then go from there. They weigh 10 lbs Has two batteries. They are so very expensive. They have 2 continuous and go to 6 demand so were going to try see if it works before getting one. Thanks Made for thinking of me. 6 hours ago

        Made Pramana

        Made Pramanahttps://medium.com/personal-growth/the-trick-to-thinking-clearer-and-better-4a61c54114fa

        3 days ago

        Ksmiles123

        Ksmiles123https://depressionanxietyseries.com

        5 days ago

          Ksmiles123

          Ksmiles123

          6 days ago

          Ksmiles123

          Ksmiles123https://www.cdc.gov/disasters/foodwater/index.html

          6 days ago

            ncares

            ncares

            In "Association between Inhaled Corticosteroid Use and Pulmonary Nontuberculous Mycobacterial Infection," Stephen J. Ruoss, MD, and co-authors analyzed the medical records of 549 patients diagnosed with NTM lung infections in Northern California over a 10-year period. They found that the odds of developing NTM pulmonary infection were 2.7 times greater in those patients who had filled three or more prescriptions for an inhaled steroid. They also found that the longer a person was on an inhaled steroid and the higher the dose, the more likely the patient was to develop an NTM lung infection.

            https://www.careerbiotech.com/2018/09/13/inhaled-steroids-may-increase-risk-of-nontuberculous-mycobacteria-lung-infections/

            6 days ago

              Brandon

              Brandon With the weather impacting the East Coast, the COPD Foundation has some great information available to help you prepare and be ready if you are impacted by disaster. To learn more, Log in and click on link below in the COPD Educational Materials Download Library.

              Disaster Preparedness Plan (DPP)
              The COPD Foundation Disaster Plan is a comprehensive resource for individuals and families impacted by Chronic Lung Diseases including COPD. It includes information on understanding how to evaluate a disaster and developing a plan tailored to their unique needs. The plan includes possible scenarios, potential consequences and tips on how to decide whether to evacuate or stay put. A companion folder contains packing lists and forms for building preparedness kits.

              https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Downloads.aspx#DPP

              6 days ago

              Ksmiles123

              Ksmiles123https://www.cdc.gov/disasters/foodwater/index.html

              1 week ago

              Ksmiles123

              Ksmiles123commented onPhysician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

               Hello! Yes, there are risk using corticosteroids; some people develop a habit of using them as a crutch even when they are not absolutely necessary. Preventive measures , stress management and good nutrition are key to avoiding recurrent...

              1 week ago

              Ksmiles123

              Ksmiles123https://www.cdc.gov/disasters/floods/sanitation.html

              1 week ago

                Made Pramana

                Made Pramanacommented onPhysician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

                 I really love the advice from the study. The information is good. It makes me realize there are some risk on taking corticosteroid or single antibiotics. Yes indeed bronchiectasis is complex. Hopefully it will make me more humble. ...

                1 week ago

                Gretchen

                Gretchenadded a new article Physician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

                This blog post was written by Dr. Emily Henkle from OHSU,  with the help of a Patient Advisory Panel.

                Researchers at Oregon Health and Science University have found that long-term treatment of respiratory diseases with inhaled corticosteroid drugs actually increases the risk of serious lung infections.

                The study, presented at the 2018 American Thoracic Society International Conference, focused on adult patients with bronchiectasis, whose bronchial tubes are thickened from...

                1 week ago

                Gretchen

                GretchenMany are in the path of the upcoming hurricane Florence. We send our prayers to those of you that may be impacted by the storm. Please take all safety measures that you can and have sufficient supplies of your medications and/or supplemental oxygen. Also, be prepared with a list of your doctors and health care professionals in case of an emergency. Take care of you and let us know how you are doing.
                https://weather.com

                1 week ago

                  Ksmiles123

                  Ksmiles123Hello! Do you get frequent sinusitis?This can be the season for sinusitis, with multiple possible allergens floating about and the mold from the falling leaves. I agree with the recommendations below with the exception of using a humidifier .https://www.webmd.com/allergies/ss/slideshow-sinusitis-dos-and-donts

                  1 week ago

                    Kandy

                    Kandy

                    Well busted out of the hospital. Home now. .They still didn't get one of the cultures done so hope not Mac!! Nothing else was found in the bronchoscopy!! Was in a week. Most from that wash out was just inflammation no infection.

                    1 week ago

                    Kandy

                    Kandyanswered the question Gerd and chronic NTM

                    My daughter knew i had silent gerd cause of coughing in the night sleeping no other signs of being sick.
                    Ksmiles123lynphyllisteaberryand 1 other also answered the question Ksmiles123and 3 others also answered the question

                    1 week ago

                    Ksmiles123

                    Ksmiles123answered the question Traveling with medical equipment

                    Hello! The link below provides information on traveling. The most important suggestion I can make is to take good infection control precautions. https://www.ntminfo.org/traveling-tips/

                    1 week ago

                    liyahslola

                    liyahslolaasked the question: Traveling with medical equipment

                    Good or bad. Give experience traveling with medical equipment. Nebulizer, VEST system, clearance system.....

                    1 week ago

                    Ksmiles123

                    Ksmiles123

                    What Claire Wineland Taught Me About Living Well With Chronic Illness-
                    ”Life is not just about being happy. It’s not about how you feel second to second. It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”

                    1 week ago

                    Gretchen

                    Gretchen

                    The CDC recommends getting the flu shot now for the at risk community:
                    *individuals 65 and over
                    *pregnant women
                    *those with an underlying medical condition and children

                    Do you get the Flu shot every year? If you choose not to, why?

                    https://www.cnbc.com/2018/09/10/cdc-urges-public-to-prepare-for-another-potentially-nasty-flu-season.html

                    1 week ago

                    • KandyI get the fluzone is the super flu shot for compromised immune systems. We usually have them end of Sept into Oct. We have town full of strep. Things seem to be starting early this year.1 week ago

                    • GretchenStrep? I am not sure if there is a season for strep or if any time is a good time for that one! I hope everyone takes precautions to stay healthy...wash hands!1 week ago

                    • Ksmiles123Yes, handwashing is so very important, especially when you go into a doctors office or a hospital at this time of year. Using a tissue to open doors, push elevator buttons can assist in prevention of the spread of illness.1 week ago

                    Ksmiles123

                    Ksmiles123Hello! This is National Suicide Prevention Week. The link below discusses reasons to live for those who may be at a very low point in their lives; resources are provided in the link.https://twloha.com/blog/world-suicide-prevention-day-and-so-i-kept-living/

                    1 week ago

                      Delia

                      Delia

                      https://www.ready.gov/hurricanes

                      Here's a useful resource for our friends in the Carolinas. I cannot stress how important it is to be prepared for storms like this. I've lived in Florida all my life and know what a difference it can make. Be prepared, be calm, and be safe!

                      1 week ago

                      Kandy

                      Kandy

                      Well my post went bye bye. Been in hospital since Tuesday exacerbation never sick this time yr. Thursday pulmo decided do Bronchoscopy my first. Went ok. They found cluster of something in bronchiectasis still waitng on lab they have 3 antibiotics on it see which kills it which the 3 am getting. No cancer.Sinus xray today. So hopefully home tomorrow.

                      1 week ago

                      Ksmiles123

                      Ksmiles123Hello! Do you use a hypertonic saline nebulizer?https://bronchiectasisnewstoday.com/2018/08/09/hyaluronic-acid-boosts-tolerance-hypertonic-saline-bronchiectasis-patients/?amp

                      1 week ago

                      Brandon

                      Brandon voted on World Bronchiectasis Conference 2018-Patient Session Recordings

                      Gave a thumbs up for a blog post!

                      1 week ago

                      JessBarrington

                      JessBarrington

                      NTM pulmonary infection- I had a respiratory infection Jan. 2018 with severe dry cough that wouldn't clear. Primary physician thought it was bronchitis, prescribed meds and ordered an X-Ray. X-Ray was abnormal so I followed up with a CT scan- again abnormal in Feb. 2018. Consulted with a pulmonolgist who started running a battery of tests thinking I had sarcoidosis. April 2018 CT scan remained unchanged with several opacities some measuring 16 x 7 mm, 12 x 4 mm 18 x 7 mm.
                      Pulmonary Function tests are with in normal limits, sputnum culture from May 2018 showed positive for NTM in June 2018. CT scan in 2018 showed a mild decrease in size example: 16 x 4 mm was previously 16 x 7 mm. another is 10 x 2 mm which was previously 12 x 4 mm and a opacity measuring 13 x 4 mm which was previously 18 x 7 mm. It was recommended that I have a broncosopy for a direct sample. I had that done the first week of Aug. 2018. Results of that should be in this coming week. I have my first consultation with Infectious Disease this week as well.
                      Since I have no underlying health conditions, It was suggested by my pulmonary specialist NOT to do antibiotics but they recommended a consult with Infectious Disease for options of treatment.

                      As for symptoms, I have a slight cough and my primary complaint is a wheezing type feeling when I am laying down (at night) as if I can "feel" my lungs expand when I inhale- but 2 deep breathes will clear up that "feeling" and everything goes back to normal.
                      After exercising, I may cough a bit more than normal. I have a lot of anxiety about this situation. Will contracting a cold make this worse? Will it ever "clear"? Can my own immune system beat this?

                      Any advice on what to ask the infectious disease specialist?

                      -Jess

                      1 week ago

                      • Click to View All Comments4 comment(s) -
                      • Ksmiles123Jess,
                        Hello!Welcome to the site. Does your pulmonologist have a lot of experience with NTM? You will be able to decide whether or not you need to seek another pulmonologist opinion and or an ID specialist once you get the results back from your bronchoscopy. Please keep us posted.
                        Infection control measures must be followed since many patients with Ntm bronchiectasis can get sick very easily.
                        Have you read Insight-The Patient Manual?1 week ago

                      • JessBarringtonI did read the Insight-Patient Manual.
                        The pulmonologist that I have been seeing does not typically deal with patients that have NTM but there is another specialist in the same practices that has a lot of experience with NTM. I am anxiously awaiting my first appointment with Infectious Disease this week. Currently, I am not on any medication.

                        Thanks for the replies, I will keep you posted! 1 week ago

                      • Ksmiles123Jess,
                        Hello! So glad to hear that your doctors partner has a lot of experience; it makes a big difference re: timely treatment. Yes, please keep us posted.
                        Glad that you read Insight ; please let us know if you have other specific questions.1 week ago

                      Kandy

                      Kandy

                      Hello everyone been in hospital since Tuesday in ND exacerbation pulmo decided do a bronchcocopy so yesterday afternoon we did it my first. Went ok then on bipap now off on waiting on sample from lungs see what bugs I got. Changed 2 antibiotics today we don't have official word yet guess still growing.

                      1 week ago

                      Ksmiles123

                      Ksmiles123Hello! Do you know the best timeframe to get the flu shot ?http://time.com/5386037/flu-shot-october-2018/

                      1 week ago

                      Ksmiles123

                      Ksmiles123answered the question Is there anyone in the world like me with ongoing symptoms post influenza?

                      Mindy, Hello! Welcome to the group. Many patients do get a break from bugs and major symptoms for awhile ;Ongoing fatigue, cough and other symptoms may persist but not as badwhen treated properly. Do you see a pulmonologist every three months? When …
                      Mindyb77 also answered the question Mindyb77 also answered the question

                      1 week ago

                      Ksmiles123

                      Ksmiles123

                      Hello! The article below is targeted to physicians and is very technical. I thought that I would share since it reviews the differences between TB and NTM.

                      1 week ago

                      Ksmiles123

                      Ksmiles123Hello! Patients realize that they must take necessary precautions when traveling ; the information below is an eye opener for me.http://www.chicagotribune.com/news/nationworld/ct-airport-security-bins-germs-toilets-20180904-story.html

                      2 weeks ago

                      Sign In to Participate
                      Or register to become a member

                      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.