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Energy Management-The Key to Living with NTM/Bronchiectasis

Posted on June 12, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

NTM/Bronchiectasis patients have an invisible disorder, which as a patient, I feel few truly understand.

Dealing with chronic lung disease on a daily basis can be extremely challenging. A major symptom for many NTM/Bronchiectasis patients is fatigue, which often fluctuates with weather changes, among other things.

I describe myself as a Type A personality whose body on many days will not cooperate and feels more like Type D. I wake up, often un-refreshed, with a to-do-list awaiting me. To make life manageable and reduce frustration, I prioritize what is essential and go from there.

After years of living with NTM, I compare my energy to money in a savings account, which requires careful budgeting. On good days I accomplish quite a bit, on bad days much less.

Feeling so unproductive would affect anyone's morale but after more than a decade of living this way, I work hard to ward off discouragement.  I still have hope that miracles will happen! We are working on many fronts to achieve these "miracles" with more companies involved in seeking treatment options and scientists working on developing new medications. It is these signs of progress that give me inspiration not to give up on a better future for me and all the others out there who are dealing with NTM/Bronchiectasis.

On bad days, I have learned to keep a journal, listing things in my life that I am grateful for.... my family and friends, my home, my education in the healthcare field (which helps in dealing with this condition), and the professionals and network that I'm in touch with. Going back and reviewing my gratitude list helps gets me through not so good days and my belief that real progress is being made within this field and that my energy level may increase keeps me going.

It is truly a balancing act. Knowing how to adapt to your life can make the difference between continual frustration and measured optimism when routine tasks, such as personal care, housekeeping, and instrumental activities of daily living can seem overwhelming.

 

 

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Tags: Bronchiectasis Energy NTM
Categories: Quality of Life

NTM Lung Disease & Exercise

Posted on May 02, 2017   |   
Author: Gretchen   |   
12 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Regular exercise and self-care are the best gifts a patient with lung disease can give to him or herself. The goal of exercise is to improve quality of life through physical activity.

Exercise has a multitude of positive benefits; it improves blood circulation, helps with the exchange of oxygen as well as carbon dioxide. It improves your overall physical health, including heart health, ability to fight infection, blood sugar levels, and sleep quality. Physical activity decreases angst and depression, while improving ones energy level and the ability to be functionally independent.

Warm-up and Cool-Down consists of gentle stretching or low intensity exercise that lasts 5-10minutes prior to and after a workout. Warm ups prepare your heart, lungs and muscles for the work to be done during exercise and cools them after a workout to prevent muscle soreness or injury. The best practice is to inhale as you move into a stretch and exhale while you hold the stretch. Relax into each stretch for 30 seconds and repeat each stretch 5 times.

Aerobic exercise gets the heart and respiratory system working over an extended time and it is the best type of exercise a lung patient can do. Better endurance and less breathing difficulty allows patients to accomplish more and feel better. Examples of aerobic exercises are walking, treadmill, bicycling, stationary cycling and swimming. Frequency and consistency matter. A minimum of three days a week will be most beneficial. Chronic lung disease patients may need several breaks to get all of their aerobic work in, but endurance will build little by little, over time.

Pace is the exercise level at which the lungs can move enough air in and out while putting enough oxygen in the blood to support the exercise. It is not uncommon for patients to only be able to do a few minutes when they start. Don't get discouraged, instead set as a goal to increase your time or distance a little every week.

There was a time when I could not walk an extra block; I once had to take a cab for the last NYC block. We all know that NTM is debilitating at times. The cabbie gave me a dirty look, alluding to the assumption that I was a very lazy woman.

Strengthening exercises build individual muscles and muscle groups, and can help patients with chronic lung disease to be more functional. Light free weights, 2-5 pounds, 10 to 15 reps, three times a week, should accomplish this goal, increasing strength in the upper arms and legs. Light weights and more repetitions are better than heavy weights and fewer repetitions.


 

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Tags: Exercise NTM Pulmonary rehab Quality of Life
Categories: Awareness

Promoting Personal Well Being

Posted on April 07, 2017   |   
Author: Gretchen   |   
1 Comments   |   
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This blog post was written by Barbara Jo Matson who is living with bronchiectasis, asthma, and aspergillosis.

At the age of 15, I almost lost my life due to double mycoplasma pneumonia, which left me with 65% permanent scar tissue on my lungs. Today I am a 59 year-old woman living with bronchiectasis, asthma, and aspergillosis. My experiences with these conditions have altered my life in many ways.

As a result of the pneumonia, I spent 2 months at Walter Reed Army Medical Center and upon my return home I weighed 82 pounds and could barely hold my head up. It took a month to even be able to walk, and this was while holding onto walls.

Prior to my illness, I had studied some yoga. While recovering, I did yoga stretches and meditation, along with eating well and taking supplements. It truly made all the difference, both mentally and physically. I ended up making it through that school year with a C average, even after missing 3 months of school.

I attribute this quick recovery to the physical practice of yoga, along with my dedication to various meditation techniques. On a daily basis, for about 10 minutes at a time, I would light a candle, gaze into the flame and watch my thoughts go by. It made all the difference, as it allowed me to feel that I were investing in me, by doing something daily that may or may not have done any good; it was in the effort of it!

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Tags: Bronchiectasis Quality of Life Self-Care
Categories: Quality of Life

Helpful Nutritional Information Related to NTM/Bronchiectasis Patients

Posted on March 24, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, and patient advocate

As a client of a respiratory specialty care facility, many of us have spoken with a nutritionist. Often, we were not feeling up to par and perhaps were overwhelmed with information that was provided to us. It is difficult to learn and retain newly acquired information under these circumstances. Hiring a private or personal nutritionist can be financially challenging and not feasible for most of us. Proper nutrition is an important factor to remaining healthy and to minimize the risks associated with poor dietary intake. Below is some nutritional information that you may find useful.

Nutrition is so important for patients with NTM/Bronchiectasis because:

  • The respiratory system and the gastrointestinal systems are all interconnected; gastric reflux is greatly affected by the foods we ingest and may result in worsening of our respiratory symptoms.
  • Good nutrition assists us in the healing process, whether it is pneumonia, the flu or common cold.
  • Serotonin is produced in the gut; our moods and mental focus are affected by the foods we ingest.

Again, what we eat affects our health, similar to the old expression on computers, JIJO, junk in, junk out. Some poor food selections are not only creating a venue for bacteria, but acidic foods such as sugar, tea, coffee, alcohol and non-grass fed meats are worsening the issue by depleting the good bacteria in the gut and harming our esophagus.

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Tags: Bronchiectasis NTM Nutrition
Categories: Awareness

The Basics of Acid Reflux

Posted on February 06, 2017   |   
Author: Gretchen   |   
10 Comments   |   
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This blog post was written by Katie Keating, RN, MS (patient advocate)

A brief education on diet and the basics of acid reflux is usually given to patients upon diagnosis. The management related to acid reflux correlates to the foods we eat and the activities that we are involved in. It is very challenging to be compliant with any diet and to change our habits; however, many of us desire to review, from time to time, and comply when we realize the impact foods and activities have on our daily lives and sleep patterns.  I hope that you find this review helpful.

Gastric Reflux

Many patients with chronic lung disorders also have gastric reflux.  Irritating acidic stomach juices leak out of the stomach and into the throat and esophagus, causing heartburn.  The irritation results in muscle spasms in the throat.  Common symptoms include frequent throat clearing, excessive mucous and soreness in the throat.  Some patients have reflux with minimal symptoms.

The following are suggestions to assist in neutralizing the stomach acid, lessen the production of acid, and prevent acid from coming up into the esophagus.  This information is not intended to be medical advice.  Please consult with your doctor if you have specific questions regarding any of these suggestions.

Don’ts:

  • Avoid overeating; choose several small, bland meals to balance your intake throughout the day.  A full stomach will put extra pressure on the valve causing it to open and allow acid into the esophagus.

List of foods to avoid

  • Caffeine, fatty foods, fried foods, spicy/acidic foods, foods that are very hot or cold, chocolate, garlic, heavy sauces, butter, whole milk, creamed foods and soups, citrus fruits and juices, peppermint and spearmint, margarine, and tomato-based products. Carbonated beverages
  • No more than 6 oz. of water per hour with food.
  • Caffeine, decaffeinated coffee can also increase stomach acid.  If you must drink coffee products, do stop by 2pm.
  • Alcohol/vino- if you desire a glass of wine, having it early with dinner will lessen reflux symptoms rather than drinking a glass before bedtime.

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Tags: Acid Reflux Bronchiectasis Diet Gastric
Categories: Awareness

Patient-centered Bronchiectasis Research Roadmap

Posted on January 04, 2017   |   
Author: Delia   |   
1 Comments   |   
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As discussed in previous blog posts, Oregon Health & Science University (OHSU) was awarded a Patient-Centered Outcomes Research Institute (PCORI) award to create a patient-centered roadmap for bronchiectasis research. In collaboration with a patient advisory panel, NTM Info & Research and the COPD Foundation, OHSU sought to identify patient research priorities via an online survey. After the data was collected and analyzed, the roadmap draft was disseminated to stakeholders and posted on BronchandNTM360social for feedback. We’re happy to announce that the roadmap has now been finalized and can be accessed here: We’d like to thank everyone who participated in this project, especially the patients—thanks for sharing your experiences, priorities, and feedback! We hope this roadmap will serve as a guide for bronchiectasis research in the future!

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Categories: Research

Bronchiectasis and NTM Research Registry manuscript Published

Posted on December 08, 2016   |   
Author: Gretchen   |   
1 Comments   |   
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In 2007, in response to requests from the Key Opinion Leaders (KOL), the COPD Foundation, in collaboration with the National Heart, Lung and Blood Institute (NHLBI), convened a workshop to discuss the unmet need to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-CF Bronchiectasis. The consensus recommendation from the workshop was that in order to address the critical, but unmet needs of this community, it was necessary to establish a Bronchiectasis Research Consortium.  As a result of the consensus, the COPD Foundation established the Bronchiectasis Research Consortium, whose first priority was to create a Bronchiectasis Research Registry to serve as a platform to collect data on and better understand non-CF Bronchiectasis.  Given the high prevalence of NTM among bronchiectasis patients, COPD Foundation partnered with NTM Info & Research in 2011 to include NTM data collection in the Registry. The goal of the Registry is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of NTM and non-CF Bronchiectasis. The Registry will also be used to provide better insight into the study of the different types of Bronchiectasis, as well as the pathophysiology of the disorder.  We are happy to announce that the first manuscript on the Bronchiectasis and NTM Research Registry baseline data has been published by CHEST. Click here to read the abstract.

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Tags: Bronchiectasis; NTM; Research
Categories: Research

Bronchiectasis Research Roadmap Draft For Review

Posted on November 22, 2016   |   
Author: Delia   |   
7 Comments   |   
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As we describe in previous blog posts, the Bronchiectasis research roadmap is in the final stages of development. Earlier this year, Dr. Kevin Winthrop and his team at Oregon Health and Science University (OHSU) began working on this Patient-Centered Outcomes Research Institute (PCORI)-funded project in partnership with NTM Info & Research and the COPD Foundation. This project is designed to identify priorities for bronchiectasis research and create a roadmap for this research. A draft of this roadmap document can be accessed here:

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Categories: Research

Preliminary Bronchiectasis Needs Assessment Survey Results & Roadmap Next Steps

Posted on October 31, 2016   |   
Author: Gretchen   |   
2 Comments   |   
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Preliminary Bronchiectasis Needs Assessment Survey Results and Roadmap Next Steps

Emily Henkle, PhD, MPH
OHSU-PSU School of Public Health

As we describe in an earlier blog post, a team led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU) began working on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities for bronchiectasis research and create a roadmap for bronchiectasis research. To date, we have held two stakeholder webinar meetings and conducted an anonymous needs assessment survey. Clinical stakeholders are currently reviewing the draft roadmap document. The draft roadmap will be available on BronchandNTM360social by November 11, 2016 for your review and feedback. 

Below we present a few of the key results from the needs assessment survey, in preparation of the draft roadmap release. The results below are from 277 patients who self-identify as having a bronchiectasis diagnosis from their doctor.

Who completed the survey?

The study was generally representative of bronchiectasis patients: 15% under 30 years of age, 81% 50-79 years, and 4% over age 80 years. Most (87%) were women. Patients from all regions of the U.S., and even a small group from outside the U.S. completed the survey. Just over 50% of patients reported a history of nontuberculous mycobacterial (NTM) infection. Among underlying diagnoses, 30% reported chronic obstructive pulmonary disease and 9% reported a genetic condition, other than cystic fibrosis. Overall, 23% reported no known genetic conditions or other underlying lung disease (“idiopathic”bronchiectasis).

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Tags: bronch and NTM Research Roadmap Survey
Categories: Research

What is an Adverse Drug Reaction?

Posted on September 30, 2016   |   
Author: Gretchen   |   
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What is an Adverse Drug Reaction?

Many of us take medications on a regular basis. What constitutes an adverse reaction to the medication versus a normal side effect? Do you know how to tell the difference? Check out some tips here:

https://www.copdfoundation.org/COPD360social/Community/Blog/Article/476/What-is-an-Adverse-Drug-Reaction.aspx

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Categories: Awareness Support

The Importance of Indoor Air Quality

Posted on September 20, 2016   |   
Author: Gretchen   |   
0 Comments   |   
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Air quality is important to every individual, with or without a lung condition, but we know it can make all the difference if you are living with a breathing disorder. Read about how to maintain positive air quality within your own home:

https://www.copdfoundation.org/COPD360social/Community/Blog/Article/563/The-Importance-of-Indoor-Air-Quality.aspx

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Categories: Awareness Quality of Life

How does NTM lung disease affect your life?

Posted on September 14, 2016   |   
Author: Delia   |   
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In September of 2015, the Food and Drug Administration (FDA) convened a meeting on Nontuberculous Mycobacterial (NTM) lung disease. The meeting focus was on patients’ quality of life as it relates to the symptoms and treatment of NTM lung disease. Meeting attendees included patients, caregivers, patient advocates, healthcare professionals, patient advocacy organizations, and representatives from the pharmaceutical industry. The meeting allowed for the opportunity to hear directly from patients, caregivers, and patient advocates on their experiences with NTM and how it impacts their daily life. Although a successful meeting with various stakeholders in attendance, very little data exists in published scientific literature on the information discussed during the meeting.

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Categories: Quality of Life Research

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