ChristinaH

ChristinaHWeโ€™re excited to share information about new clinical trials evaluating a potential study treatment for patients with MAC lung disease. If you or a loved one have been newly/recently diagnosed with a MAC lung infection and are interested in participating in research, you can learn more here: 


https://www.patientwing.com/ntmstudy-arise-encore-COPD

NTM MAC Lung Disease Study

Are you living with an NTM MAC lung infection or related symptoms? You may be eligible for a new study which is evaluating a potential treatment option for MAC lung disease.

5 days ago

ChristinaH

ChristinaHSharing helpful information on coping with your bronchiectasis and/or NTM diagnosis can be very helpful to others. This month's "Share Your Story" series question is on the topic of mental health. Click on the link below to share your best tips or advice on what you do to maintain a positive attitude and improve your mood.

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Mental-Health

Share Your Story - Mental Health

Maintaining a positive attitude when you have bronchiectasis and NTM can be challenging. What types of activities bring you joy or improve your mood?

1 week ago

  • NewestOldestClick to View All Comments6 comment(s)
  • ChristinaHlaff4evrโ€‹ you crack me up! 


    All great suggestions you all! I am definitely a fan of music for relaxation or a great book. Right now I am reading American Dirt and it's so good! I also use walks to clear my head and destress although it's  chilling down a bit in Virginia in the mornings.  1 week ago
  • CarolynnSomething I have done for 4 years and is more important than ever for me now with the new diagnosis is to keep a gratitude jar.  You don't have to put something daily but maybe weekly...simple pleasures that we are thankful for.  I also play pickle ball.  If you can find a group who wants to have fun and can deal with you sitting out games...it has been the highlight in a pretty "dark" summer for me.  Unfortunately, I live in South Dakota so the games are moving inside.  I did get my Moderna booster Friday and Wednesday started on the 3 antibiotic regime for NTM.  ID is having me stagger the starts of the antibiotics so Monday I will officially be on all 3.  I am not sure if I will feel safe playing indoors.  How are you all dealing with group settings...weddings, funerals any group events or something like playing pickle ball in gym where it is not feasible to wear a mask??  It seems especially hard to during Covid to determine where I am safe.3 days ago
  • Ksmiles123Carolyn,
    Thank you for sharing your tip on the gratitude jar and your love of pickle ball.
    Each person must decide on how comfortable they are attending indoor events. Personally, I would prefer to err in the side of caution and continue to limit indoor exposure with strangers until more     effective treatments are readily accessible.  It is very tough to fall another season with the corona challenges. However, we must believe that we will eventually get to the other side of this.  Good luck with the 3 antibiotics this week- I hope you have minimal side effects.3 days ago
Ksmiles123

Ksmiles123

Hello! Have you had your vitamin D level checked recently? Are you having difficulty getting your number up? The article below reviews the reasons for not being able to raise your vitamin D levels easily; https://www.mindbodygreen.com/articles/why-you-cant-get-your-vitamin-d-levels-up-and-what-to-do

14 hours ago

Ksmiles123

Ksmiles123commented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 Christina,You are most welcome! My goal is to make the NTM journey a little lighter for other NTM patients....

1 day ago

ChristinaH

ChristinaHcommented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 You always have wonderful insight and advice Katie! Thanks for your contributions to our blogs!...

1 day ago

Ksmiles123

Ksmiles123commented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 Rainbow,You are most welcome! We must continue to believe that we will get to the other side of the rainbow ๐ŸŒˆ. Coincidentally,Over the Rainbow was my favorite song when I was going through my initial NTM challenges many years ago. More research and...

1 day ago

Rainbow

Rainbowcommented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 Thank you so much Katie Keating for this great article. ...

1 day ago

Rainbow

Rainbowvoted on Coping with NTM/Bronchiectasis โ€“ Your Chronic Illness

Gave a thumbs up for a blog post!

1 day ago

Vinny M

Vinny Mvoted on Coping with NTM/Bronchiectasis โ€“ Your Chronic Illness

Gave a thumbs up for a blog post!

1 day ago

ChristinaH

ChristinaHadded a new article Coping with NTM/Bronchiectasis โ€“ Your Chronic Illness

This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

I have learned that most people have never heard of NTM lung disease or bronchiectasis let alone understand what it is like living with such baffling diagnoses. However, the pandemic and the mediaโ€™s attention to long haulersโ€™...

1 day ago

Lexann

Lexann

Hello Everyone! Is there a recommended handheld medication device I could put in my purse in case I have a coughing fit when I'm out and about? -TY,  Lexann 

2 days ago

  • NewestOldest
  • Ksmiles123Lexan
    Hello! I donโ€™t know of a handheld device for coughing fits.  I suggest to just excuse yourself for a few minutes, walk away until it passes. Having bottled water and some cough drops may assist you temporarily.2 days ago
  • ChristinaHHi Lexann. Are your "coughing fits" producing or because of mucus? If so, I agree with Kate. If your lungs are working to get the mucus up, you definitely want to let that happen. If you think that your airways may be reacting to some sort of environmental triggers, your doctor may be able to prescribe you a bronchodilator to relax your airways.1 day ago
Ksmiles123

Ksmiles123

Hello! The article below reviews the benefits of exercise and oneโ€™s mental health. I realize that many are not up to exercising due to fatigue or other symptoms. However, simple exercises of a short duration are a good place to start. https://www.verywellmind.com/physical-exercise-for-panic-disorder-and-anxiety-2584094

2 days ago

Ksmiles123

Ksmiles123

Hello! Did you get your flu shot or booster shot recently? How did you feel afterwards?

2 days ago

Ksmiles123

Ksmiles123Hello! The article below reviews โ€œ Setting Boundaries โ€œ.  More current Research reveals how our mental health may impact our physical health:https://www.webmd.com/mental-health/setting-boundaries

Setting Boundaries

Learn more about how setting and keeping boundaries can improve your mental health.

4 days ago

Ksmiles123

Ksmiles123

Hello! Are you setting healthy boundaries with the important people in your life?
Examples include the following;
Saying no or yes to others.
You communicate your own wants, needs and feelings within your relationships.
You are committed to and responsible for nurturing your full potential, within your limitations.
You value your opinion and feelings as much as others.
You are able to ask for assistance when you need it without feeling guilty.
You donโ€™t compromise your values or integrity to avoid rejection.
Which  boundaries do you have most difficulty with?

5 days ago

ChristinaH

ChristinaHadded a new article Research Opportunity for Newly Diagnosed MAC Patients

This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Mycobacterium avium complex (MAC) is a type of nontuberculous bacteria that occurs naturally in our environment. It can be found in soil, dust, and water including naturally occurring water sources (e.g., lakes, streams, and rivers) and municipal water sources (e.g.,...

5 days ago

Ksmiles123

Ksmiles123

Hello! Stress is a part of our daily lives .  Can you identify your biggest stressors at this point in time?

6 days ago

Ksmiles123

Ksmiles123answered the question Share Your Story - Mental Health

Brandon, I agree. We cannot allow ourselves to be totally bombarded with frightening stories. We must take control of what we can do to protect ourselves Covid and other infections and to keep as well and calm as possible.
Deppydo also answered the question Deppydo also answered the question

6 days ago

JohnT

JohnTcommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 I had a staph infection one time and it was easily treated with Bactrim. I agree with Katie, that Pseudomonas is a much bigger worry than staph....

1 week ago

Storyteller

Storyteller

Does anyone have any recommendations for a good pulmonologist in Atlanta, Ga ? We may be moving.

1 week ago

Ksmiles123

Ksmiles123Hello! Self care assists us in dealing with stressors in our lives. Below are some quotes on practicing good self care. What type of self care do you practice while under stress?https://www.positivityblog.com/self-care-quotes/

71 Self Care Quotes to Help You to Take Care of Yourself

71 self care quotes that will help you to take care of yourself, love yourself and make sure you take time to just focus on you.

1 week ago

ChristinaH

ChristinaHcommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 You're welcome Katie! Interpreting these studies into lay manuscripts are a challenge but I am learning so much every time I write one! I think it's important for our community to know how the BRR is being used to support research efforts. :)...

1 week ago

Ksmiles123

Ksmiles123commented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 Thank you for sharing this interesting update. It seems that Pseudomonas is the most worrisome bacteria in the group....

1 week ago

ChristinaH

ChristinaHadded a new article The Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

This blog post was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

Non-cystic fibrosis (CF) bronchiectasis is a lung disease characterized by permanent widening of the airways. Patients with bronchiectasis are often burdened by frequent exacerbations (also known as...

1 week ago

Ksmiles123

Ksmiles123Hello! An important conversation to begin ahead of the holidays, in attempt to lower stress throughout the holidays:https://www.healthline.com/health-news/are-you-vaccinated-how-to-ask-others-before-holiday-gatherings?slot_pos=article_3&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=generalhealth&utm_content=2021-10-18&apid=25246343&rvid=94a84db5178149857828ced51c5f2056ff605e1649ff4cd9cb2111133e73b49f#The-importance-of-asking-in-advance

โ€˜Are You Vaccinated?โ€™ How to Ask Others Before Holiday Gatherings

If youโ€™re thinking about attending a holiday gathering with friends and family members but not sure whether they're vaccinated, hereโ€™s how experts suggest approaching the topic beforehand and why itโ€™s important to ask.

1 week ago

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.


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