Discussions
Discussions
The link below offers some great suggestions on making traveling more pleasant:
https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Travel
Below is information on the red flags, preventative measures and treatment options:
https://www.bronchandntm.org/For-Patients/Learn-More/Exacerbations-and-Treatment/Exacerbations
The link below provides the basics on airway clearance: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Quick_guide_to_airway_clearance_Web.pdf
Please let us know if you have any questions.
Most of us enjoy being outdoors, sitting in the sunshine throughout the summer months. However, we must be cautious while taking certain medications. Tge article below reviews the categories of medications that are most “ sun sensitive “,: https://www.goodrx.com/health-topic/dermatology/avoid-the-sun-if-you-take-these-drugs
Hi! Not sure how to post this, so hopefully it works. I did not know if anyone was aware that there is a conference in San Diego this week - the 2024 NTM & Bronchiectasis Patient Conference. It is May 16-17, & they are still accepting registration for virtual attendance ($65), but the in-person registration is closed. My doctor recommended it. It is for patients, caregivers & family. If anyone is interested, the link for info & to register is:
The blog article below reviews the benefits of exercise: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/51/NTM-Lung-Disease-Exercise
I was on 6 rounds of Steroids, including IV, for a severe mold allergy. Then diagnosed with MAC after.
Beliw is an article on the treatment of allergies: https://www.everydayhealth.com/allergies/treatment/
I was diagnosed 11/22 with NTM. In 2019, my PCP missed a bronchiectasis diagnosis from a coronary calcium CT scan. I went 3-1/2 years untreated & without airway clearance practices, no sputum til 2022. I had a bilobectomy in 5/23 and in 9/23 started triple antiobotic therapy for MAC. I’m cleared 4 months after treatment, “as far as we know” & am being encouraged to stay with treatment until 4/2025. I’d like to get a consult at one of the 14 bronchiectasis/NTM treatment specialty centers. Names & rationale would be great info. Thank you so much
The link below reviews the red flags of a possible exacerbation:https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
The link below offers some suggestions for BNTM individuals who will be traveling over the upcoming months: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel
Practicing meditation improves the quality of life for many individuals. The article below from the Mayo Clinic explains the benefits of practicing meditation:https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858
My mother had her right upper and middle lobes removed 2 weeks ago today. She has emphysema/COPD and NTM, diagnosed 2013. She is still extremely weak and on home oxygen. Has anyone been through this or have a family member that has been through this? Did you have to stay on oxygen? What is your quality of life now? If a family member, did your loved one survive? My mother is very thin/low body weight and did not exercise prior to surgery and now she can barely walk two steps without gasping.
I will be travelling to Greece this summer and will be purchasing a travel nebulizer. What nebulizer do you recommend? I also will not be able to disinfect my nebulizer cups and I read somewhere there are disposable cups. Anyone have any experience with this? Any tips on international travel would be appreciated.
I have experienced higher than normal platelet levels since I was diagnosed with bronchiectasis in 2015. Has anyone experienced the same?
Salt Therapy
The link below discusses the key components of a pulmonary rehab program: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Pulmonary-Rehab
A disease is rare when it only affects a small portion of the population. Even though each disease may be rare on its own, living with a rare disease is, in fact, quite common. About 1 in 10 Americans are affected by a rare disease. Unfortunately, most of these conditions do not have any treatments available. People living with rare diseases often find it difficult to get a diagnosis and treatment plan that works for them. This is due to the limited research and treatment options available for rare diseases.
If we learn more about rare diseases, we can better support people living with these conditions. Rare diseases that affect the lungs and contribute to COPD include:
- Alpha-1 Antitrypsin Deficiency (AATD): a cause of emphysema that can run in families.
- Non-Cystic Fibrosis Bronchiectasis: a condition that can develop in people with certain lung infections. It can cause a lot of mucus in the lungs.
- Non-tuberculous mycobacterial (NTM) lung diseases: lung infections caused by germs called “mycobacteria”.
- Lymphangioleiomyomatosis (LAM): a genetic condition that causes smooth muscle growth in the lungs. This makes it hard for people living with this condition to breathe in and out.
People living with rare diseases face similar challenges. Rare Disease Day was created in 2008 to bring awareness to these conditions. It is celebrated on the last day of February each year.
Help bring awareness to Rare Disease Day by sharing your story or reason for caring about rare diseases. Make sure to use #ShareYourColors and #RareDiseaseDay on social media to show your support and raise awareness for these conditions.
More information on Rare Disease Day can be found at www.rarediseaseday.us or the global website www.rarediseaseday.org. Check out other ways to get involved here!
Has anyone gone through the nebulized tobramycin treatment that is being suggested by my doctor.
From what I can find on the web, the 28 days on, 28 days off, and then 28 days of treatment seem to be relatively safe, with possible ear and kidney complications.
Oasisman
It is important to have a thorough cardiac workup as we age. Different medications can affect our heart health; it is good to have a baseline stress test. Below is information on the procedure: https://my.clevelandclinic.org/health/diagnostics/16984-exercise-stress-test
Do inhalers work? I was given albuterol and bevespi. They were suppose to help with breathing but feel that they do not. I experience a rapid heart beat after taking the inhaler. I have bronchiectasis and they think possibly COPD. Not sure if they know exactly what I am dealing with.
Thank you.
Has anyone been able to get a months supply for less than $50.00? I got quoted a $30.00 price for 3% solution at Costco, but I need to ask my pulmonologist if that is as effective.
Thanks
Airway clearance is important throughout the dry heat of the winter months and the peak flu/ RSV season. Below is a video on the subject with Dr.Pamela McShane:https://m.youtube.com/watch?v=L-EHohMe7II
When we have a PICC line and have NTM and or abscessus, can blood be drawn from the PICC line or should we insist on getting blood drawn from the other arm?
And why is it considered dangerous? Infection?
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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.