ChristinaH

ChristinaHUpcoming Live Event: โ€œFeeling Your Best with Bronchiectasis: Symptom Managementโ€

On Tuesday, Sept. 27, at 3 p.m. EDT, we will be hosting a webinar with Tim Aksamit, MD, Medical Director of Bronchiectasis and NTM 360, to discuss bronchiectasis symptom management. Dr. Aksamit will deliver a short presentation and answer attendees' questions. This interactive webinar will be sure to inform! Donโ€™t forget to register for the event!

https://us06web.zoom.us/meeting/register/tZIsf-qopj0iGdxgLm06dUHZEWC4oTQI_hdk 

2 days ago

Ksmiles123

Ksmiles123

Hello! Today is World Lung Day: https://goldcopd.org/world-lung-day-2022/

19 hours ago

Melanietheartist

Melanietheartist

๐Ÿ˜ Iโ€™m not sure if Iโ€™m doing this correctly? Iโ€™m new here. Iโ€™ve had bronchiectasis for about 6 years now. Iโ€™ve also got COPD and emphysema. Just thought I would reach out and say hello

1 day ago

Ksmiles123

Ksmiles123

Do you have any favorite quotes on the subject of HOPE?
Two of my favorite quotes on Hope are below: 
Hope itself is like a star- not to be seen in the sunshine โ˜€ of prosperity, and only to be discovered in the night of adversity. Charles H. Spurgeon
We must accept disappointment, but never lose infinite hope. Martin Luther King 

1 day ago

Kandy

Kandyvoted on How the โ€œTeach Backโ€ Method May Improve Education for Those with Chronic Lung Conditions

Gave a thumbs up for a blog post!

1 day ago

JohnT

JohnTvoted on How the โ€œTeach Backโ€ Method May Improve Education for Those with Chronic Lung Conditions

Gave a thumbs up for a blog post!

2 days ago

Sylvia*1976

Sylvia*1976

Hello everyone! My name is Sylvia and I'm grateful to be able to talk with others that have been dealing with Bronchiectasis.  I've been dealing with this disability since 1997 but the past three and half years it has gotten worse with a diagnosis of NTM Mac lung disease which I was treated the last 3 years with a month of infused antibiotics and ongoing oral antibiotics of 3,200mg every Monday, Wednesday and Friday. I would really like to know what other methods are out there that I could discuss with my Pulmonary Specialist as well as my Infectious Disease Specialist to maintain or what others are doing that has assisted them in having 

2 days ago

Ksmiles123

Ksmiles123

Hello! How are you doing with the huge drop in temperature? Some patients are impacted by sudden weather changes. 

3 days ago

  • NewestOldestClick to View All Comments9 comment(s)
  • Ksmiles123Kandy,
    I sure hope that this exercise equipment will help you to feel well through the winter months. We all have trade offs when dealing with chronic illness. I am sorry that you had to get rid of your couch and chair. You are a strong and determined woman. Take good care of yourself. 1 day ago
  • StorytellerI am so sorry that your health is worsening. Never a better time for treatments beyond antibiotics and airway clearance ! I am still waiting for brensocatib and hoping safe effective stem cell treatments can cure us โ€ฆmostly that the research is continuing. 1 day ago
  • Ksmiles123Yes, research is continuing. We must hold onto HOPE. It us very hard to be patient when we desperately want new treatments now. However, many new treatments are being researched or in the pipeline.1 day ago
Ksmiles123

Ksmiles123Hello! It is important to have perseverance , resiliency when you are dealing with a chronic condition: 

3 days ago

Ksmiles123

Ksmiles123

3 days ago

Ksmiles123

Ksmiles123

Hello! Are you sleeping well at night? Sleep ๐Ÿ’ค is so important for our mental health and our immune systems. Below is a guide for better sleep ๐Ÿ˜ด: https://www.nhlbi.nih.gov/files/docs/public/sleep/healthysleepfs.pdf

4 days ago

Ksmiles123

Ksmiles123Medical experts are now recommending that Primary Care Doctors screen adults under 65 years old for anxiety:
https://www.washingtonpost.com/wellness/2022/09/20/mental-health-anxiety-screening/

In a first, health panel calls for routine anxiety screening in adults

In a nod to the nationโ€™s mental health crisis, the U.S. Preventive Services Task Force has called for routine anxiety screening for adults under age 65.

5 days ago

MaryA

MaryA

I cannot find any information as to whether or not himalayan salt therapy is recommended for bronchiectasis.  I have been going to a salt cave which does seem to help with sinus problems but also makes me cough out a great deal of mucus which is tiring.   Can anyone help with this?  Thank you. 

6 days ago

Ksmiles123

Ksmiles123Hello! Below is a video on Emotional Wellness and Quality of Life :https://vimeo.com/748852151/d898a90471

Patient and Family Session - Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD

This is "Patient and Family Session - Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD" by Av Wired on Vimeo, the homeโ€ฆ

6 days ago

Ksmiles123

Ksmiles123Hello! The link below is an update on bronchiectasis treatment options: https://m.youtube.com/watch?v=b7-SYvCEFME

6 days ago

Ksmiles123

Ksmiles123Hello! Below is a great blog article on goal setting, written by Mike Hess, RT, https://www.copdfoundation.org/Praxis/Community/Blog/Article/1792/Setting-and-Achieving-Goals-Together-with-Our-Patients.aspx

Setting (and Achieving) Goals Together with Our Patients

This article was written by Michael W. Hess, MPH, RRT, RPFT As clinicians, we are often called upon to make recommendations. We have access to peer-reviewed research, so we typically have an idea of the most appropriate therapy for a given situation. Wheezing? That calls for some …

1 week ago

Ksmiles123

Ksmiles123Hello! The link below is a video on The Patient Perspective, from the recent  MUSC conference:https://vimeo.com/748858168/b5fc5364c5

Patient Perspectives, Faculty Panel

This is "Patient Perspectives, Faculty Panel" by Av Wired on Vimeo, the home for high quality videos and the people who love them.

1 week ago

Ksmiles123

Ksmiles123

Hello! How is your day going? 

1 week ago

CJ

CJ

Hi everyone,
I just received this news that Chest CT is most probably NTM. 
I live in Orange county CA, cant seem to find  a pulmonologist that takes care of NTM patient. 
Is there a list of Pulmonologists in OC that take care of NTM patient? 
Please help. 
Thanks,
CJ

1 week ago

Ksmiles123

Ksmiles123

Hello! The video below reviews antibiotic treatment for NTM: https://vimeo.com/748850475/29d1720a6a

1 week ago

Storyteller

Storyteller

I am absolutely terrified. Last week, I was diagnosed with a stage 1 invasive ductal carcinoma of the left breast ( most common form of cancer ) . It is tiny and I found it - could not be seen on mammogram but was on ultrasound.
Lumpectomy followed by radiation has been mentioned . I have not had my formal appt yet, but so upset about possible effects of radiation on my already compromised bronchiecstasis lung. My left lung is the better lung and that is the side of the breast cancer.
Has anyone else been in this position? I am going to make my concerns very clear to the team when I get my appt.

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a link for an upcoming lecture on prebiotics and probiotics, hosted by NTMIR:https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ejdhx69k0aea3b3a&oseq&c&ch

Prebiotics and Probiotics

Join Michelle MacDonald, MS, RDN, CDE, from National Jewish Health and Amy Leitman, President from NTMir for this interesting nutrition webinar.

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a video on non-pharma logic therapies: Vhttps://vimeo.com/748903816/ebd06f05f0

Patient and Family Session - Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D

This is "Patient and Family Session - Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D" by Av Wired on Vimeo, the home forโ€ฆ

1 week ago

Ksmiles123

Ksmiles123

Hello! Are you able to join us for this afternoon s coffee social at 3pm, est? 

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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