BronchandNTM360social welcomes new member keima who joins 3,325 current members of our community. Weโ€™re glad you're here!

Ksmiles123

Ksmiles123Hello! The link between discusses dealing with the dude effects of treatment and medication to counteract the effects: https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Coping-with-Nausea

Coping with Nausea | Bronchiectasis and NTM Initiative

Large amounts of mucus and repeated use of certain medicines called antibiotics (an tee by ah tics) can cause nausea and an upset stomach for many people with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.

23 hours ago

Niamhy

Niamhy

Interesting to learn how some people find the warmer weather less enjoyable. I love the sunshine and brighter mornings but the heat does not agree with me.
After almost 6 months of taking the 'big 3' the thoughts of another 12 months of this regimen is depressing. I wonder will I ever feel normal again.  The weight loss I have experienced is so annoying as I was already slim now I look scrawny. Everytime I look on here though I get such positive vibes. Being back at work is wonderful but I am not sure if I will be able for more than 5 hours per day.  I get summer holidays in 5 weeks and a decision will have to be made regarding my role at school for September. So much to think about and the winter will be different too plus the children will have way more viruses! 
Thank you for all the links and posts - always so informative.

1 day ago

Kandy

KandyWishing everyone a Blessed Sunday!! Enjoy the day do something fun! 

1 day ago

Ksmiles123

Ksmiles123The link below reviews the symptoms of post traumatic stress syndrome: https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

Post-traumatic stress disorder (PTSD) - Symptoms and causes

Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event โ€” either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

2 days ago

sj702

sj702

Happy Saturday!
I have been doing various airway clearance techniques from the great seminar hosted through here last month- I recommend it!


I am wondering if this is normal with the exercises:
1. They make me really tired

2. Even after a full set of 6 rounds (10 sets of breaths/holds per) I still have enough mucus to come a horse.  


I also do positional drainage but I feel like 80% of the time no matter what I do, there's more crackling and coughing almost immediately after that just never seems to stop. ๐Ÿ˜

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • sj702Hi Ksmiles ๐Ÿ™‚


    I do take Mucinex intermittently as I don't think it really helps me much, but I take it when I feel flared up.  I do saline nebs twice a day with an Albuterol first (severe asthma).  I do the exercises after the treatments. 


    I am seeing my pulmonologist in two weeks. I've never been on consistent antibiotics, only for pneumonia or if a flare won't subside. I usually end up on steroids ๐Ÿ˜’


    We did try 5 mg a day of Prednisone for three months, but that didn't do anything. 


    I know my asthma and bronchiectasis interplay- small and large airways both being affected. I think when my asthma flares everything is so inflamed that I can't get everything out. 


    It's frustrating because my pulmonologist never even told me about the airway clearance breathing, etc. I had to find out a lot on this site, which is a huge blessing, but also frustrating. Why wouldn't you tell people easy things that can help them?


    I do have a vest, but I don't find it helps. The PAP device and the airway clearance breathing have helped the most. 


    2 days ago
  • MaggieHI can absolutely relate. I also have a lot of mucus and am able to clear best  with the 7% saline attached to my aerobica. It is tiring at times and sometimes I get dizzy. 
    My pulmonologist also isnโ€™t an expert on Bronchiectasis and Iโ€™ve done the research myself over the years and he gets me what I ask for. They just still all arenโ€™t in the loop about our illness. 
    Keep up the good fight! 
    Maggie 2 days ago
  • Ksmiles123SJ702,
    Yes, many if the doctors do not have the time to do the important piece of patient education which is so unfair to the patient. Some doctors continue to get educated on the latest treatments, some do not. 
    I would suggest trying mucinex more frequently until your next doctors appointment and drink plenty of liquids to help loosen the secretions. We are here for you. 1 day ago
DianeD

DianeD

Finding I dont enjoy the heat like I used to...
Whats up with that?
Not my norm!

2 days ago

Kandy

KandyUPDATE: Certain Philips Respironics Ventilators, BiPAP Machines, and CPAP Machines Recalled Due to Potential 


Health Risks: FDA Safety Communicationhttps://www.fda.gov/medical-devices/safety-communications/update-certain-philips-respironics-ventilators-bipap-machines-and-cpap-machines-recalled-due?utm_medium=email&utm_source=govdelivery

UPDATE: Recalled Philips Respironics Ventilators, BiPAPs, and CPAPs

This update provides additional information on the recall and recommendations for people who use repaired and replaced devices.

3 days ago

Ksmiles123

Ksmiles123

Hello! Do you ever forget whether or not you have taken a medication? The link below offers some tips on medication safety management: https://www.hopkinsmedicine.org/health/wellness-and-prevention/help-for-managing-multiple-medications

3 days ago

Tara COPDF

Tara COPDF created the event World Bronchiectasis Day Question Time Hosted by the European Lung Foundation

This 1-hour webinar brings together a panel of bronchiectasis experts to answer the questions that concern you about bronchiectasis. This event will take place on Friday 30 June at 15:00-16:00 British Summer Time. In the run up to World Bronchiectasis …

4 days ago

Kandy

KandyHappy 1st Day of June. Hope its a good month for all of us! 

4 days ago

Ksmiles123

Ksmiles123

Happy June 1st!  The educational topics that we will be focusing on this month include the following:  medication safety, travel planning, fall risks, oxygen safety, and emergency care. How to cope and recover from disasters and post-traumatic stress will also be reviewed.  Please let us know if you have any specific questions related to any of the above topics. 

4 days ago

Ksmiles123

Ksmiles123Hello! Today is World No Tobacco Day: https://www.who.int/campaigns/world-no-tobacco-day

World No Tobacco Day

The annual World No Tobacco Day campaign (31 May) is an opportunity to raise awareness on the harmful and deadly effects of tobacco use.

5 days ago

Ksmiles123

Ksmiles123Are you interested in trying chair yoga at home? The link below includes a video.https://www.verywellfit.com/chair-yoga-poses-3567189

10 Yoga Poses You Can Do in a Chair

These 10 chair yoga poses are adaptations of traditional poses to make yoga more accessible for people who cannot stand for long periods.

5 days ago

Ksmiles123

Ksmiles123Hello! Do you know anyone who is currently vaping? The article below reviews the issues with vaping: https://www.hopkinsmedicine.org/health/wellness-and-prevention/5-truths-you-need-to-know-about-vaping

5 Vaping Facts You Need to Know

Smoking electronic cigarettes is often considered safer than regular smoking. Learn facts about vaping and why you should rethink taking it up.

5 days ago

DianeD

DianeD

I would think that after over 1 month of being on them my body would be used to them..its just a matter of changing the time taken by a few hours..
I have many hobbies along with going back to work, assumed because of the water thing swimming would be off limits..good to know
Thank you

6 days ago

DianeD

DianeD

Ksmiles...you suggested taking the Rifampin at night..you mean like before bed or maybe alittle earlier?
Im thinking of doing this and was just curious as usual.  Lol
Always so many questions

6 days ago

DianeD

DianeD

Well I guess this means no swimming this year?
Seems I dont really enjoy the heat like I used to either...gonna be a long boring summer at this rate ๐Ÿ˜ฉ

6 days ago

ChristinaH

ChristinaH created the event 6th World Bronchiectasis and NTM Conference

Join us in New York City on July 18-20, 2023 for the 6th World Bronchiectasis & NTM Conference! This CME-accredited in-person and livestreaming course will feature the most up-to-date education in bronchiectasis and non-tuberculous mycobacterial …

6 days ago

ChristinaH

ChristinaH

Welcome to the community TayTayโ€‹! We are here to support you. Let us know if you have questions! 

6 days ago

Ksmiles123

Ksmiles123

Have you been able to get out for a walk? I just found a great free app, called map my walk if you are interested in tracking your steps. 

1 week ago

Ksmiles123

Ksmiles123

How are you doing today? Do you have any special weekend plans? 

1 week ago

Ksmiles123

Ksmiles123commented onThe West Meets the East: Complementary Medicine Options

 Maggie,Thank you for your positive words. We are all in this together- we must support one another on the ongoing health journey to create the best possible present and future. Katie ...

1 week ago

MaggieH

MaggieHcommented onThe West Meets the East: Complementary Medicine Options

 This is a wonderful blog post KSmiles. All these therapies and modalities have their value. In conjunction with traditional medicine. There are many things we can have in our toolbox to nurture our bodies, minds and spirits and help us to live our...

1 week ago

Ksmiles123

Ksmiles123Wishing everyone a pleasant Memorial Day weekend! 

1 week ago

Kandy

KandyGood morning everyone want to wish every one a good Saturday and weekend. 

1 week ago

Kandy

Kandyvoted on The West Meets the East: Complementary Medicine Options

Gave a thumbs up for a blog post!

1 week ago

MaggieH

MaggieHArt and Mindfulness for Relaxation.


Hi everyone, I wanted to share that Art and Mindfulness have been one tool in my BE toolbox that has helped me cope better with the stress, uncertainty and anxieties that Iโ€™ve experienced with this disease for more than 30 years.
I have put together a Youtube Channel with this in mind. As a Clinical Social Worker and Artist I wanted to share my experiences and tools with whoever wants to join me.


Ive created this for those of us living with Bronchiectasis NTM and Chronic Lung Disease.


If youโ€™d like to try Creative Expression and Mindfulness as a way to lesson some of the anxiety we live with I invite you to visit me on Youtube.  This isnโ€™t to build a Channel. I donโ€™t care about that. I just want to share something positive that has helped me more than I can express. ๐Ÿ’•


https://youtube.com/@maggiehartart

Maggie Hart Art

As an artist I know the power art has to heal the mind and spirit during difficult times in our lives. I created this channel to provide content focused on using art as a way to reduce stress and cultivate mindfulness for anyone with a chronic illness, medical diagnosis, or any difficult life …

1 week ago

DianeD

DianeD

Hello Maggie,
Oh Im not ashamed to take them or admit that I need them was just wondering if many people who have this health issue take them and if there are any that seem to work better then others, my Dr suggested Lexapro nut its fairly new on the market so dont know much about it amd when you ask they just respond with..oh its very good!
Guess it was a silly question seeing as everyone reacts differently to dif meds and their situations.

1 week ago

  • NewestOldestClick to View All Comments5 comment(s)
  • ChristinaHTaking medicines to assist with mental health is definitely nothing to be ashamed of. When someone is living with a chronic lung condition, often no two days are the same. This can be stressful and cause anxiety at times. I encourage anyone who has those feelings to talk to their health care provider and see if either a medication or other coping mechanism is right for them. We are all here to support each other. Thank you Maggie, Diane, and Kandy for sharing your experience. It definitely helps others. ๐Ÿ’—6 days ago
  • sj702I've been on Lexapro for 13 years! 2 days ago
  • Kandy I started Lexacpro in Oct does it take a while to work? 1 day ago
Ksmiles123

Ksmiles123answered the question Share Your Story - Lung Surgery

Maggie, Thank you for sharing your positive experience with the group. The word โ€œ surgery โ€œ itself frightens many people. It is great to read successful surgery posts.
MaggieHJohnTChristinaH also answered the question MaggieHand 2 others also answered the question

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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