joancarol

joancarolvoted on Beginning the Journey of NTM Lung Disease

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13 minutes ago

Ksmiles123

Ksmiles123

Hello! Happy Memorial Day weekend! 
Tis the weekend of summer kickoffs. It is wise to take summer precautions, such as staying hydrated, minimal time outdoors in the humidity and heat.
What is your favorite part of summer?:)

42 minutes ago

Lupe

Lupe

I am happy because 
I have finally found people who have the same thing as me….a month ago I was diagnosed with mycobacterium avium Mac  also ….. with some aspergillosis fungus ….. for that….. they had to do 7 biopsies in my lungs….I am coughing a lot and START taking ethambutol rifampin and azithromycin. the problem I have at the moment is that my lower part hurts every time I cough and I feel a charp  pain on the right side of my hip… does anyone have that problem? I am so happy that someone is going to listen to me……..I live in Chicago Illinois and I’m 66 years old 

18 hours ago

  • Ksmiles123Lupe,
    Hello! Welcome to the site. Some people do have lower chest discount, rib discomfort from the ongoing cough.  I don’t think that your hip pain is related to your cough. Have you had bursitis in your hip or other hip issues in the past? We are here to listen, to support you- to answer your questions. You are not alone. 15 hours ago
Ksmiles123

Ksmiles123Hello! Do you use Albuterol and or levalbuterol? https://www.singlecare.com/blog/levalbuterol-vs-albuterol/

1 day ago

Ksmiles123

Ksmiles123

Hello! Are you exposed to lung irritants at your workplace ? 

1 day ago

Linda Esposito, MPH

Linda Esposito, MPHIn 2017, after I was diagnosed with bronchiectasis and a MAC lung infection, I spent months walking around in my Upper Westside, NYC neighborhood in a daze. At the time, I was seeing a pulmonologist who hadn’t explained anything to me in detail. To make matters worse, it seemed like the more I researched these two rare conditions online, the more questions I had.
 
Fortunately, my emotional brain fog did not prevent me from seeking answers from other professionals. The first breakthrough I had was meeting with Marion Mackles, a cardiopulmonary expert at the Pulmonary Rehabilitation and Wellness Center. She patiently answered my questions and taught me airway clearance techniques.
 
I liked the friendly vibe at the center and over time I followed up by watching many of the Pulmonary Wellness seminars that were offered at no charge (and still are!). One of my favorites was Dr. Noah Greenspan, owner of the center, interviewing Donna Wilson, a Registered Respiratory Therapist, nurse and clinical exercise specialist. After listening, I knew I needed to see her for a consultation.

At the time Ms. Wilson was working in the Integrative Health department at Memorial Sloan Kettering. We met and went over my CT scan report and health issues. She answered questions and together we did exercises that target the breathing muscles, including strengthening the diaphragm, which plays a large role in respiration.

I have continued to do her exercises over the years and thought she had retired. So, I was so pleased to see a Pulmonary Wellness social media post at the beginning of this year saying that she would again be a guest speaker.
 
Now, the recording is available —
https://vimeo.com/710460803

I promise you, it will make you reconsider how you breathe and the critical role of exercise!
As always, consult your medical team before beginning, modifying or stopping

2 days ago

WalshKTF

WalshKTFvoted on Beginning the Journey of NTM Lung Disease

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2 days ago

WalshKTF

WalshKTFvoted on Preventing Spring Flare-ups for those with Bronchiectasis

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2 days ago

JohnT

JohnT

2 days ago

Ksmiles123

Ksmiles123

Hello! Have you received your 2nd Covid 19 booster or are you planning on doing so in the near future? Information on Covid 19 boosters in the link below? 

3 days ago

Ksmiles123

Ksmiles123answered the question Substitute for Performs

Is there an appeals hotline number that you can call? We become accustomed to certain drugs and are often reluctant to make changes if we do not absolutely have to do so

3 days ago

Rush

Rushasked the question: Substitute for Performs

I received a letter from Humana Friday that Medicare has denied coverage for Performist even though I have been taking it for over a year. My doctor's nurse said that they refused to cover a generic that is now available. Does anyone have a suggestion on …

3 days ago

Smini

Smini

Hello,
I was diagnosed with bronchiectasis a year ago. I‘m only 28 years old and had my first symptoms with 26. I had lots of lung infections before I started airway clearance. I haven‘t had an exacerbation since august 21 and I‘m very happy about it. I would like to know how often people with bronchiectasis suffer from lung infections if they are clearing their lungs everday.  I know it differs from person to person but I would love to hear about some expiriences. Thank you! 


4 days ago

Just Jeanne

Just Jeanne

I was recently diagnosed with bronchiectasis since I have had a cough since September 😕   Over the past several months I have been given 4 different inhalers.  Does this cough ever leave?  🤔 

5 days ago

Ksmiles123

Ksmiles123

Good morning! Please check the weather alert and air quality reports in your area before venturing out today.  Poor air quality definitely has an impact on how most of us will feel on extreme weather days. 

6 days ago

Vinny M

Vinny Mvoted on Preventing Spring Flare-ups for those with Bronchiectasis

Gave a thumbs up for a blog post!

6 days ago

Ksmiles123

Ksmiles123

Hello! Today is International Clinical Trials Day! https://www.humber.nhs.uk/news/?postid=608672

1 week ago

Ksmiles123

Ksmiles123

Hello! Below is an updated physician referral list: https://ntminfo.org/united-states-of-america/

1 week ago

Ksmiles123

Ksmiles123

Hello! How are you feeling?
Any special weekend plans? 

1 week ago

Ksmiles123

Ksmiles123

Hello! We all need ongoing words if wisdom, inspiration: https://motivationallines.com/wisdom-quotes/

1 week ago

Linda Esposito, MPH

Linda Esposito, MPHOn Sunday, May 22nd, National Jewish Health
nutrition expert, Michelle MacDonald will talk to us about bone health

How about joining me?



https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ej6sgnxf1a6cd40f&oseq=&c=&ch=



Only two more days to sign up!!



1 week ago

Jean1

Jean1

I am going to get my JnJ vaccine today. About 18 months ago I got a Moderna and was sick for two months. As a result I did not get the second vaccine. Please send positive energy, prayers my way for success. I have been in isolation at home since March 2020🌸

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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