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FDA Hearing: Ciprofloxacin Inhalation Powder

Posted on November 17, 2017   |   
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This blog post was written by Tracie Sullivan, Grassroots Manager, COPD Foundation.

My first week as a new staff member at COPD Foundation has been an exciting and busy one! Yesterday I had the pleasure of attending the Food and Drug Administration (FDA) Antimicrobial Drugs Advisory Committee Meeting with six exuberant, welcoming, and passionate advocates. This committee hearing was discussing proposing a new drug application called ciprofloxacin inhalation powder, for reduction of exacerbations in non-cystic fibrosis bronchiectasis in adult patients with respiratory bacterial pathogens. The advisory panel is set up to make recommendations to the FDA about whether or not they should approve a drug. Committee members for this advisory council were made up of 16 individuals composed of doctors, medical professionals, higher education professors, clinical research, mathematical statisticians, consumer and patient representatives.

As the proceedings started, myself and my colleagues learned about the research behind ciprofloxacin inhalation powder, the results from the clinician trials, the biostatistics involved, and clinical safety. Once the afternoon session began, our advocates were able to stand in front of the committee members and share their stories with bronchiectasis. Our advocates included doctors, patients, and caregivers. Those who had been a part of the clinical trials and had seen significant improvements, and those who did not have the opportunity to be a part of the trial, and were looking for new medical treatment opportunities. These stories included the everyday challenges they face, the medical routes they must adhere to, the lifestyle changes they have had to make, and concerns about the lack of research and medical advancements. Each advocate discussed how this new and innovative drug could provide hope for individuals with bronchiectasis, how it could change their lives. How one less exacerbation could keep them out of the emergency room, could allow them to go to that family event they had missed years before, how their quality of life could be instrumentally improved.

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Tags: Advocacy Bayer Cipro FDA
Categories: Research Support

Foliage and the Respiratory Patient

Posted on October 31, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Fun fall decorations, such as pumpkins, hay stacks and cornstalks are a great way to get in the autumn spirit. Who doesn't love stunning fall foliage? While most people enjoy the lingering warm weather, Indian summer and unseasonably warm temperatures can make allergy symptoms last longer.

Ragweed plants usually begin to pollenate in mid-August and may continue to be a problem until a hard freeze, depending on where you live. As ragweed season winds down in the North and Northeast, the leaves start to fall, ramping up mold production. When leaves just sit in your yard, moisture accumulates, accelerating mold growth. If you have mold allergies, these signs of the season can do a number on your health.

Mold spores that grow on dead leaves and release spores into the air are common allergens throughout the fall. Old spores may peak on dry, windy afternoons or on damp, rainy days in the early morning.

Mold is a non-scientific name for many types of fungi- unwanted patches of black, brown, blue, yellow, pink, green, smelly fuzzy growths. Molds, both indoors and outdoors require moisture.

A runny nose, itchy eyes and scratchy throat can arise as the days get shorter and the leaves begin to change.  Most commonly diagnosed mold related symptoms include: asthma, allergic rhinitis and nasal congestion, post nasal drip with sore throat, coughing and hoarseness.  Mold allergies can cause sleepless nights and daytime fatigue.

Allergies can have a huge impact on quality of life and it's completely unnecessary suffering. A few recommendations for avoiding allergens outside include the following:

 

  • Start taking allergy medications 1 to 2 weeks before ragweed season begins-but please, always check with your doctor before starting a new medication.
  • Camping and outdoor trips should not be scheduled during times of high pollen count, which is usually September to October for ragweed.

 

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Tags: bronch and NTM Fall tips Mold Respiratory
Categories: Awareness

Event Alert: Bronchiectasis and NTM Town Hall Teleconference

Posted on October 24, 2017   |   
Author: Gretchen   |   
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The COPD Foundation is excited to announce that we will be convening a 2-part town hall teleconference series about bronchiectasis and NTM. The first town hall teleconference is titled Bronchiectasis and NTM 101: The Basics and will be convened on Thursday, December 7, 2017 from 1:00pm to 2:00pm EST. This town hall teleconference will provide an opportunity for community members to learn the basics about bronchiectasis and NTM, as explained by expert speaker Dr. Kevin Winthrop of Oregon Health and Science University. The event will allow also for the opportunity for community members to ask Dr. Winthrop questions about bronchiectasis and/or NTM. Topics to be covered during this event are listed in the agenda below. We're looking forward to having you join us on our first-ever Bronchiectasis and NTM Town Hall Teleconference. Please REGISTER FOR THE EVENT HERE and mark your calendars accordingly!

Bronchiectasis and NTM 101: The Basics

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

1:05 – 1:20 pm An Overview of Bronchiectasis and NTM Kevin Winthrop, MD

- What are bronchiectasis and NTM? How do they relate?

- What causes these conditions?

- What are common symptoms of these conditions?

1:20-1:30 pm  Questions and Answers

1:30-1:45 pm  An Overview of Bronchiectasis and NTM cont’d – Kevin Winthrop, MD

- How are these conditions diagnosed?

- How are these conditions treated?

- What resources are available for patients?

1:45-1:55 pm  Questions and Answers

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

The second part of this town hall teleconference series will take a more in-depth dive into bronchiectasis and NTM and will be convened in early 2018. More details to come soon!


 

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Tags: Bronchiectasis Conference COPD Foundation
Categories: Research

Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

Posted on October 17, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Firepits, Fireplaces and Chimineas-Tips for Respiratory Patients

Do you enjoy sitting around a crackling fireplace indoors or cozy firepit outdoors on a fall night? I have always loved doing so; it brings back fond childhood memories of toasting marshmallows or singing around the fire. Outdoor fires make you feel alive. The crackling sounds of indoor fireplaces, the hearth of a home are comforting, inviting.

I have been in denial about the possibility of fire smoke irritating my lungs or causing lung damage for years since I enjoyed using fireplaces and firepits so much. Over the past few years though, I have decided that it just is not worth taking a chance of injuring my lungs.  Hence, I no longer sit by a campfire, a firepit, chiminea or an indoor wood-burning fireplace. I value my health too much and will take any preventive measure to lessen the chance of aggravating the health of my lungs.

The best way to manage chronic lung disorders is to avoid the things that make them worse. It is so important to identify irritants that can trigger respiratory symptoms.

Burning wood releases pollutants into the air we breathe; wood smoke contains millions of tiny particles. Breathing in wood smoke can irritate sensitive airways, cause airway tightening, increase respiratory symptoms, increase hospital admissions, exacerbate COPD, and decrease your ability to breathe normally. Simply put, if you have a lung disease, breathing in wood smoke can make your disease worse and cause a flare-up.

Smoke isn’t the only health hazard you should avoid. Y The heat itself can be harmful. Inhaling air that is consistently at a higher temperature than the surrounding air can cause more damage to the lining of your lower respiratory tract than smoke inhalation. (1)

Environment Canada and Health Canada has identified many hazardous chemical substances in wood smoke, including: (2)

  • PM2.5 consists of a mixture of microscopic particles of varied size and composition and  has been declared a toxic substance under the Environmental Protection Act. These particles can be inhaled deep into the lungs, leading to serious respiratory problems, including mortality, especially among those with pre-existing cardiopulmonary illnesses.
  • Carbon monoxide (CO) can reduce the blood's ability to supply necessary oxygen to body's tissues, which can cause stress to the heart. When inhaled at higher levels, CO may cause fatigue, headaches, dizziness, nausea, confusion, and disorientation.
  • Oxides of Nitrogen (NOx) can lower the resistance to lung infections. In particular, nitrogen dioxide can cause shortness of breath and irritate the upper airways.
  • Hydrocarbons (HC) — can damage the lungs.

 

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Tags: Bronchiectasis Firepits NTM Respiratory
Categories: Awareness

The Bronchiectasis and NTM Information Line is now open!

Posted on September 25, 2017   |   
Author: Gretchen   |   
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The COPD Foundation is happy to announce the release of the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864). The Bronchiectasis and NTM Information Line is a toll-free number managed by the C.O.P.D. Information Line for peer-to-peer information and referrals on Bronchiectasis and NTM by patients and caregivers. Callers receive one-on-one support from an Associate that speaks English and Spanish.

All Information Line Associates are trained over a rigorous 80-hour process on customer service and call etiquette, service to sales, Health Insurance Portability and Accountability Act (HIPAA) compliance, patient resources, and the programs of the Bronchiectasis and NTM Initiative.

The Bronchiectasis and NTM Information Line is now available for patients, caregivers, and friends looking for more information. A live Associate can be reached Monday through Friday from 9:00am to 6:00pm ET.

 

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Tags: Bronchiectasis COPD Info Line NTM
Categories: Support

Why Weather can Worsen your Lung Condition

Posted on September 05, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Weather can affect most of us in general, but understanding weather forecasts is especially important for people with respiratory disorders.  My objective is to discuss a few of the different terms often used during weather forecasts and to share experiences I have had in regard to the weather. I hope that this will help you to have a better understanding of their meaning and how they may impact you as a patient. I sometimes have days when I feel awful, not realizing that it is a temporary issue due to the weather. Please note that this is my experience, but this may not always be the case and you should always contact your doctor if you are unsure.

Dew point is the first temperature at which the moisture in the air begins or would begin to collect on surfaces. Humidity refers to the saturation of the water vapor or moisture and is expressed in percentages. 

A high relative humidity implies that the dew point is closer to the current air temperature. Relative humidity of 100% indicates the dew point is equal to the current temperature and that the air is maximally saturated with water.  High relative humidity is when air is holding as much water vapor as it can. For clouds to form, and rain to start, the air does have to reach 100% relative humidity. Typically, rain falls into air with less than saturated humidity. More moisture in the air results in less oxygen to breathe and some patients may experience bronchospasm. Bronchospasms are a spasm of bronchial smooth muscle producing narrowing of the bronchi.

The following link goes to a TEMPERATURE/DEW POINT/RELATIVE HUMIDITY CALCULATOR. Although this was designed to be used to preserve artifacts, it also provides an indication for possible humidity, mold growth, etc. Dew point is the better measurement of how humid the air feels.

Heat Index is a measure of how hot it really feels when relative humidity is factored in with the actual temperature. You can use this HEAT INDEX CALCULATOR of quantity expressing the discomfort felt as a result of the combined effects of the temperature and humidity of the air.

 

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Tags: bronch and NTM Quality of Life weather
Categories: Awareness

The Challenges of Summer for Respiratory Patients

Posted on July 14, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Summer has finally arrived!!! It is a happy season for most people who enjoy spending more time outdoors. I loved summer to the nth degree when I was younger and before I experienced respiratory issues. Now, summers can be challenging for me for several reasons.

The warm temperatures are great as long as it is not too hot or humid. However, because high temps and high humidity can make respiratory patients feel exhausted quickly, I am now very cautious not to stay out too long on humid days because I know it will make me feel run down.  While every patient is different, historically, I have been ill with either MAC or another gram-negative infection every year in mid-August, over the past decade. My goal for this year is to prevent this reoccurrence.

Below are a few preventive measures that I am mindful of during the summer:

  • Pay attention to the weather channel to check when there are severe weather alerts for patients with respiratory issues.  Elevated ozone and particulate levels can greatly impact the way respiratory patients feel.It is wise to follow the recommendations made by your local weather channel to stay indoors during this time period. 
  • Stay hydrated with fluids. Water and non-carbonated beverages are the best choice. Caffeinated beverages may give a boost; however they can lead to dehydration. Avoid high sugar drinks since mycobacterium thrive in high sugar mediums. We also want to avoid the co-morbidity of type-2 diabetes.
  • Have an extra inhaler, nebulizer solution, and mucinex on hand in case you cannot get out to the drug store for a few days in the extreme heat.
  • Avoid hot tubs, as tempting as they may be, since mycobacterium can dwell in hot tubs and easily become airborne.

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Tags: bronch and NTM preparations Summer Tips
Categories: Quality of Life

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   |   
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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   |   
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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   |   
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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

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