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Managing Stress with Bronchiectasis and NTM

Posted on November 28, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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This blog post was written by Jane Martin, BA, LRT, CRT

If you have Bronchiectasis/NTM, you well know that the effects of this disease can result in major changes to your lifestyle and activities. And these changes, and challenges, are bound to cause stress. Looking at common causes of stress (stressors), coping skills and techniques, and how to use a stress log for managing stress brought on by Bronchiectasis/NTM are valuable ways to improve daily life.

Let’s start by looking at some stressors commonly found with Bronchiectasis/NTM. You may have one or more of these, and you may have others that are not on this list.

· Eating issues and digestive problems

· Body image issues with low weight

· Uncontrollable cough leading to embarrassment and/or social isolation

· Side effects of strong, frequently-used antibiotics

· Gastro-esophageal reflux disease (GERD)

· Fatigue or Exhaustion

· Cancelling plans due to not feeling well

So, what does it take to get through this stress? It is important to note that what works for one person may not work for another. Here are some examples of coping skills and techniques that may be helpful.

1. Try to avoid stressors when possible. If you’re going out to where there might be cold or flu germs, try not to shake hands, hug, or kiss. Wash your hands often or use hand sanitizer, and write with your own pen.

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Tags: bronch and NTM coping with chronic illness Quality of Life Stress with bronchiectasis Stress with NTM
Categories: Quality of Life

Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

Posted on November 20, 2018   |   
Author: Gretchen   |   
5 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Exacerbations and flare-ups are a part of life for many bronchiectasis and/or NTM patients. A flare-up is when your everyday symptoms worsen; such as on humid or rainy days. Exacerbations, however, last longer and are more serious. They usually happen when a respiratory infection causes inflammation, excessive mucus, fever, increasing cough, shortness of breath, or reduced lung capacity, as noted on pulmonary function tests.

Unlike flare-ups, exacerbations can have permanent effects. Some patients’ conditions may never get back to where they were before the exacerbation. This often is the case following a pseudomonas infection.

As a patient and a nurse, I made light of my exacerbations in the past, just figuring that another round of antibiotics was part of the journey. Little did I realize the impact long-term antibiotics would have on my gastrointestinal and genitourinary tracts. I now take a more proactive approach to prevent any possible infection from invading my body and avoid antibiotics as much as I can.

Winter weather causes an increase in symptoms because cold air is denser, drier, and more difficult to breathe. Airways and nasal passages may be dry, causing inflammation that worsens symptoms, increases mucus production, and increases your risk of illness or infection. In cold weather especially, individuals at risk of infection should try to do everything possible to keep your body strong and prevent acute exacerbations.

The following are seven suggestions to stay strong this winter season.

1) Avoid people who are sick. Public places are full of germs, but caregivers or family members might also be a threat to you. If you must come into contact with people when they are sick, wear a mask or ask them to wear one, preferably a mask with a HEPA-filter. Avoid sharing drinking glasses or utensils, common condiments or other group-food containers. Do not visit hospitals, nursing homes, or sick people.

2) Practice good handwashing techniquesif you are in a public place or come into contact with someone who is sick. Wash your hands in warm, soapy water for a few minutes (Sing the ‘Happy Birthday’ song to make sure you’ve washed long enough) and dry them with a paper towel. Use a paper towel to turn off the running water and to open the exit door. Don’t touch your eyes, nose, or mouth unless you know your hands are clean. Carry antimicrobial hand sanitizer for times when you don’t have access to soap and water.

3) Get your annual flu shot and a periodic pneumonia aaccine(once every five years if you are under 65).

4) Create a healthy home. Avoid smoke from wood-burning stoves and fireplaces and other inside pollutants such as scented candles, perfumes and aerosol cleaning products. Be mindful of dust, pet dander and mold. Here is a resource with some good information in home evaluation: https://www.nationaljewish.org/health-insights/air-pollution-and-healthy-homes/evaluating-a-home

a. Air filters and purifiers can help. Always be conscious of HVAC systems in homes you visit. Do not use humidifiers.

b. For those who do not have elderly, children or guests in their home, raising the thermostat on the water heater from 120° to 145° may reduce exposure to mycobacteria. Adding a water purification system to your home or apartment may also reduce exposure.

5) Button up outside. Since cold weather can make respiratory symptoms worse, breathe through your nose and wear a scarf over your face when you’re outside. This traps the heat and moisture from your breath and warms and humidifies it. When possible, try to breathe through your nose, not your mouth, so the air can further warm and pick up moisture as it travels through your airways to your lungs. Avoid going outside when it is extremely windy or cold.

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Tags: Bronchiectasis exacerbations NTM prevention of exacerbations Quality of Life Winter exacerbation
Categories: Awareness

Physician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

Posted on September 12, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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This blog post was written by Beth McKnight, Patient Advocate, with the help of a Patient Advisory Panel.

Researchers at Oregon Health and Science University have found that long-term treatment of respiratory diseases with inhaled corticosteroid drugs actually increases the risk of serious lung infections.

The study, presented at the 2018 American Thoracic Society International Conference, focused on adult patients with bronchiectasis, whose bronchial tubes are thickened from inflammation and infection, preventing the clearing of mucus. Bronchiectasis, most accurately diagnosed by a CT scan, is on the rise in the U.S.

Dr. Emily Henkle, presenting author, said the team found that inhaled corticosteroid use increased the risk of hospitalized infections, and no evidence exists that they prevent exacerbations or progression of the disease. The study examined Medicare data from 90,000 patients who used either inhaled corticosteroids or the oral antibiotics azithromycin and erythromycin. The study found an increased 39% risk in the corticosteroid group as compared the group taking the oral antibiotics.

However, Dr. Henkle cautioned, potential risks exists with taking just one antibiotic long-term, such as the development of antibiotic resistant bacterial lung diseases like Mycobacterium aviumcomplex (MAC or MAI) and other nontuberculous mycobacterial infections.

What does this mean for physicians who treat patients with bronchiectasis and other lung diseases?

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Tags: Bronchiectasis Bronchiectasis Treatment inhaled corticosteroid drugs MAC oral antibiotics
Categories: Research

World Bronchiectasis Conference 2018-Patient Session Recordings

Posted on August 27, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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Chronic illness affects every aspect of a patient’s life. Research and new therapies are essential to improve the health and well being of those affected with chronic illnesses. 

Georgetown University and MedStar Health recently held patient sessions at the World Bronchiectasis Conference this past July. Experts in the field were brought together to discuss the newest research focusing on bronchiectasis and nontuberculous mycobacterial lung infections.

If you were unable to attend, we now have the recordings available from the 6 sessions geared toward patients.

If you were able to join, please let us know what you found most valuable as a patient or what you wished to have learned more about. You can post your responses on BRONCHANDNTM360SOCIAL or email us at INFO@BRONCHIECTASISANDNTMINITIATIVE.ORG.

 

 

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Tags: Basics of Bronchiectasis Bronchiectasis Bronchiectasis Treatment Bronchiectasis; NTM; Research NTM Research World Bronchiectasis Conference 2018
Categories: Research

Moving Closer to an Approved Therapy for NTM Lung Disease: FDA Advisory Committee says Arikayce (Inhaled Liposomal Amikacin) is a safe and effective treatment for those with limited options

Posted on August 08, 2018   |   
Author: Gretchen   |   
6 Comments   |   
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As you know currently there are no FDA-approved treatments specifically for nontuberculous mycobacterial (NTM) lung disease caused by MAC. Yesterday, the Antimicrobial Drugs Advisory Committee of the U.S. Food & Drug Administration met to assess a newly proposed treatment, Arikayce (Inhaled Liposomal Amikacin) for NTM lung disease caused by Mycobacterium avium complex (MAC).

During the meeting, the Advisory Committee heard presentations from Insmed, the company who developed the treatment, the FDA staff who reviews and analyzes data from the treatment’s clinical trials and from the public. Remarkably, 12 community members traveled to the FDA to tell their stories, each having been allotted 5 minutes during the open public hearing session. The physicians, patients, family members and representatives from the COPD Foundation and our partner, NTMir, spoke of the urgent need for new treatment options that are more effective and less toxic. They explained how NTM has changed their life and what it meant to them to have a better chance at achieving culture conversion, the main benefit of the proposed new treatment.

Their voices, along with the dozens of patients who submitted written comments prior to the meeting, were heard loud and clear and we want to say THANK YOU!

The Advisory Committee was asked to vote on three questions including whether the primary outcome of culture conversion was clinically meaningful, whether the data showed that Arikayce was safe and effective for all NTM lung disease caused by MAC, and whether Arikayce was safe and effective for NTM lung disease cause by MAC in those who have not achieved culture conversion on standard antibiotic regimens. There was a great deal of discussion about what it meant to a patient to have a negative culture and how that translates to feeling better and doing better. In the end, the Committee voted 8 to 6 in support of culture conversion being a meaningful benefit.

Most importantly, the Committee voted 12 to 2 that Insmed had shown that Arikayce was a safe and effective treatment for those who have limited or no other treatment options. Since all of the patients who participated in the trials had already been on standard therapy, the Committee did not vote favorably that it was safe and effective for all patients but further studies that include newly diagnosed or untreated patients could change this in the future.

We are very pleased with the positive outcome that reflects the strong data that Insmed presented for those patients with nowhere else to turn. While this is not the final say in the approval of the therapy, the final decision will be made by the FDA’s Division of Anti-Infective Products, the COPD Foundation is optimistic that they will follow suit after reviewing the data, results, and comments by the research and the patient community.

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Tags: Arikayce FDA Inhaled Liposomal Amikacin Inhaled Therapies NTM
Categories: Research

Lend Your Voice to Raising Supplemental Oxygen Awareness

Posted on August 02, 2018   |   
Author: Gretchen   |   
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Mary Kitlowski, a member of BronchandNTM360social and COPD360social is in search of individuals who use supplemental oxygen (or a friend or family member who does) to share their stories. In childhood Mary was diagnosed with a rare genetic disorder called Primary Ciliary Dyskinesia (PCD) and later Bronchiectasis. She’s always had a passion for running and created an organization called Running on Air http://www.runningonair.net/virtual-racesthat seeks to advance awareness of lung diseases and other rare illnesses, to raise funds for organizations that seek to raise the same awareness and to inspire anyone who suffers with a disability to continue to exercise and live a healthy existence no matter the condition.

For much of the month of August, Mary hopes to share a story a day about individuals who use supplemental oxygen. She also plans to create a supplemental oxygen fact sheet. If you or someone you know would like to share your story and lend your voice to raising awareness on supplemental oxygen, please send your story and photo(s) to: Mary.RunningOnAir@verizon.net by August 10, 2018.The stories and photos will be highlighted on Running on Air’s Facebook page.

The story should include:

  • 1-3 paragraphs
  • Why is the individual on oxygen?
  • What has changed due to the supplemental oxygen?
  • Have any obstacles been overcome due to the oxygen therapy?
  • Since beginning supplemental oxygen, what can the individual no longer do?
  • Anything else that may be relevant to the story
  • A photo with the supplemental oxygen, if possible

Thank you for considering a contribution to this important endeavor. An unknown author said, “One voice can make a difference. A million can change the world.” We have to begin somewhere.

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Tags: Awareness Bronchiectasis Running on Air
Categories: Awareness

Upcoming FDA Advisory Committee Meeting for ALIS

Posted on July 12, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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The U.S. Food & Drug Administration (FDA) has posted a Federal Register Notice announcing the upcoming Anti-Microbial Advisory Committee Meeting for Insmed’s inhaled liposomal amikacin. The committee will discuss new drug application (NDA) 207356, amikacin liposome inhalation suspension, sponsored by Insmed, Inc., for the proposed indication of treatment of nontuberculous mycobacterial lung disease caused by Mycobacterium avium complex in adults as part of a combination antibacterial drug regimen.

The meeting will take place on August 7, 2018 in the Great Room at the FDA’s White Oak campus (10903 New Hampshire Avenue, Silver Spring, MD).

If you are a patient with MAC lung disease who either did or did not participate in the Insmed clinical trial, and you wish to address the committee during the Open Public Hearing session of the meeting that day, please contact Amy or Susan at ntmmail@ntminfo.org. Please note that the deadline to register as a speaker for the FDA meeting is July 16th, so anyone who is interested should contact them as soon as possible. Compensation will be offered for travel expenses.

It would be most helpful to have two or three patients speak before the committee for 3 to 5 minutes each, addressing the severe unmet need you have as a patient, and how this drug can benefit you. If you participated in the trial, you should also discuss how it helped you, and how it would be beneficial to you to have this drug approved so they can take it.

For those unable to attend the meeting in person or who will not be speaking at the meeting, the FDA offers the opportunity to submit written comments to the docket, no later than July 24, 2018. Statements submitted are public; those submitted before the deadline are printed out and given to committee members with their briefing materials. Comments can be submitted via this link: https://www.regulations.gov/document?D=FDA-2018-N-2490-0001. Just click on the Comment Now! button.

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Tags: FDA Insmed NTM
Categories: Research

COPD, Bronchiectasis and NTM Webinar Recording

Posted on July 09, 2018   |   
Author: Gretchen   |   
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We hope you were able to join us for our June 2018 webinar with expert speaker Dr. Charles (Chuck) Daley. We are pleased to offer you the FULL RECORDING of this event. This recording is free and can be accessed at any time.

During the 60-minute webinar, Dr. Daley offered an overview of COPD, bronchiectasis and NTM, including how these conditions relate to one another as well as treatments for each condition. There were two live question and answer sessions during which members of the audience were given the opportunity to ask questions of the expert speaker.

Dr. Charles (Chuck) Daley

National Jewish Health, Denver, CO, USA

 

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Tags: Awareness Bronchiectasis Treatment Bronchiectasis; NTM; Research COPD NTM Treatment
Categories: Awareness

Join the FDA Public Workshop on Inhaled Therapies for Bronchiectasis

Posted on June 06, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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The Food and Drug Administration is holding a public workshop entitled “Development of Inhaled Antibacterial Drugs for Cystic Fibrosis and Non-Cystic Fibrosis Bronchiectasis” on Wednesday, June 27th from 8:30pm to 4:30pm ET.

The purpose of the public workshop is to discuss the clinical trial design challenges and future considerations for inhaled antibacterial products to treat cystic fibrosis (CF) and non-CF bronchiectasis.

Why tune in? Currently, there are no treatments that the FDA has approved specifically for bronchiectasis. This workshop will help to provide a better pathway forward to developing new treatments for CF and non-CF bronchiectasis patients, including a discussion about what outcomes are the best to measure, how long trails should be, and how resistance issues should be handled.

Make your voice heard! Did you know that the FDA also considers information provided by patients when making decisions about how new devices and treatments are developed and approved? Are you a patient with Non-Cystic Fibrosis Bronchiectasis? You can register to speak at this public hearing and provide the patient perspective on your experiences with the disease, how symptoms have impacted your daily life, and what outcomes matter most to you. You are the expert, and speakers at the workshop and staff at the FDA are seeking your help and guidance in future clinical trial designs and inhaled antibacterial products. To sign up to speak or attend the public workshop, you can register here.

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Tags: Bronchiectasis; NTM; Research FDA NTM Patient Voice Therapies
Categories: Research

Event Alert: An Introduction to Bronchiectasis & NTM Webinar

Posted on June 01, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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The COPD Foundation is convening a webinar to educate the COPD community on bronchiectasis and NTM lung disease. Join us for An Introduction to Bronchiectasis and NTM on Wednesday, June 20th from 1:00-2:00pm ET. Expert speaker, Dr. Charles Daley from National Jewish Health will provide an overview, covering the agenda items listed below, and answer questions that community members may have. This event is free, at no cost to the participants, but registration is required. Please click here to register for the event and mark your calendars! You will receive an email with connection instructions upon registering.

An Introduction to Bronchiectasis and NTM

1:00 – 1:05 pm Welcome and Introduction – COPD Foundation

1:05 – 1:20 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are COPD and bronchiectasis? 

o How do they relate?

o How do they differ?

· What causes these conditions?

· What are common symptoms of these conditions?

· How are they diagnosed?

1:20 – 1:30 pm Questions and Answers

1:30 – 1:45 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are NTM?

· How do they relate to COPD and bronchiectasis?

· How are NTM treated in these conditions?

o How is treatment similar?

o How is treatment different?

· What resources are available for patients?

BRONCHIECTASIS AND NTM INITIATIVE WEBSITE/COMMUNITY

BRONCHIECTASIS AND NTM INFORMATION LINE: 1-833-411-LUNG (5864)

NTM INFO & RESEARCH WEBSITE

1:45 – 1:55 pm Questions and Answers

1:55 – 2:00 pm Closing Remarks COPD Foundation

 

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Tags: Bronchiectasis COPD Education Dr. Charles Daley NTM
Categories: Awareness

How Caregivers Can Practice Self-Care

Posted on April 24, 2018   |   
Author: Gretchen   |   
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This blog post was written by guest writer, Harry Cline, author and caregiver

 

For many caregivers, finding the best ways to ensure their loved one is well taken care of while also taking care of their own needs can be overwhelming. This is especially true for those who are charged with caring for an elderly family member. Balancing self-care with the correct amount of attention to their patient’s needs isn’t always easy and can lead to guilt or other negative emotions. It’s important to remember that, as a caregiver, it will be impossible for you to properly tend to your patient if you yourself aren’t happy and healthy. There are more tips and resources at the Caregiver Action Network.

Self-care involves a number of aspects, from ensuring that you get enough rest, to figuring out a daily exercise routine that will help you stay strong. Caregiving can take a physical toll, so finding a good way to keep yourself fit and in shape will help prevent injuries. 

Get in a workout

Taking care of your body is an essential part of being a caregiver and it can help you stay healthy while giving you an outlet for any frustrations or negative feelings you may have. Create a daily workout routine that incorporates all the things you need to feel good. One great exercise is yoga because it keeps you physically fit while allowing you to meditate and focus on the present moment, which will lower your anxiety. Also, consider learning more about stretching, which is wonderful for relieving stress. There are several stretchesthat can be done anywhere, and quickly, which makes it easy to fit stretching into your daily routine.

Surround yourself with support

Caregiving can be a very demanding job in a lot of ways, so it’s important to surround yourself with people who support youand will help out when you’re feeling overwhelmed. It’s also a good idea to maintain a healthy social life since being a caregiver will often require that you to be present for your loved one for many hours of the day. Maintaining friendships and other relationships will help your mental health even when the work becomes difficult. 

Eat well

Because caregiving can be such a difficult job, it’s essential to keep your strength up. Eating well-balanced mealswill help give you the strength—physically and mentally―to carry out even the most demanding tasks during the job. Pay attention to your body and its needs, particularly when it comes to the times between meals. If you work long hours, pack healthy, protein-rich snacks that you can grab quickly. 

Find a hobby

Having a hobby that you enjoy doing is a great way to relieve stress at the end of a long day, and it can help act as a sort of therapy when you’re feeling down. Whether it’s something creative, such as painting or writing, or social, such as playing basketball with a group of friends, having something to look forward to will let you release energy and make you feel healthier.



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Tags: Caregivers Exercise support
Categories: Quality of Life

Applying for Disability Benefits

Posted on April 02, 2018   |   
Author: Gretchen   |   
13 Comments   |   
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This blog post was written by Cynthia Flora, patient advocate and head of NTM Support Group

Applying for disability with the Social Security Administration (SSA) can be a daunting task, but also is working with chronic lung conditions. My best piece of advice is EDUCATE YOURSELF AND PUSH FORWARD. If your symptoms and/or side effects from medications are making it difficult to work, think about getting more information and possibly applying. Typically, this process gets more difficult each year as the agencies have less money and our population ages. The level of difficulty will depend in part upon your local office.

I was lucky enough to find knowledgeable, kind employees that I could sit down with and actually helped talk me through the process. Go in armed with a clear one-page synopsis of dates, diagnoses, symptoms, and ways your condition affects your work, etc. You can always expand from there. If you cannot go in person and have to do it via phone, I would not recommend spending much time with a worker who is not being helpful, even though you may have to wait for another phone rep. Keep in mind that a bit of kindness and gratitude on the phone often goes a long way when you are asking someone to help.

Everyone is on his or her own journey. As for me, not long after I began a three year stint on the "big three antibiotics", it was obvious to me that my new job should be staying well. Exhaustion and the fear of getting the flu or an upper respiratory infection every time I used a phone, computer, or fax machine that a sick co-worker had just touched made work a huge impediment.

In general, the older you are, the sicker you may be, and the more difficulties you face doing your current job are key factors. You do NOT want to put a brave face on your condition. You want them to understand how difficult your worst days can be. If awarded disability your monthly payment will be the amount you would receive had you remained working and applied for Social Security at your full retirement age. This varies with age due to the government chipping away at benefits. You can look it up on your individual SSA account or call the SSA if you can't figure it out.

HTTPS://WWW.SSA.GOV/DISABILITY/

HTTPS://WWW.DISABILITYBENEFITSCENTER.ORG/SOCIAL-SECURITY-DISABLING-CONDITIONS


 

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Tags: Applying for social security bronch and NTM disability respiratory issues
Categories: Awareness

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