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Communication – A two-way street between health care provider and patient

Posted on September 14, 2021   |   
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This blog article was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education at the COPD Foundation.

The outcome every patient wants from good communication with their health care provider is a plan. A plan to help them feel better or cope with their condition . However, somewhere between “signing-in” and “riding home” patients often find themselves still with questions and a lack of confidence regarding their needs being met. As a healthcare provider, a respiratory therapist, I want to know that when you leave our time together that you have taken the advice and feedback that I have given you and will do your best to implement the plan at home. The question to be asked is, “How can we improve the communication between health care provider and patient?”

Here are some tips for improving communication with your health care providers to ensure that your needs have been met and all your concerns have been addressed.

  • Prepare some talking points: Your doctor or health care provider only gets a “snapshot” of how you are doing when you arrive at your appointment. Sometimes, this “snapshot” is very telling, and your needs can immediately be addressed. Other times, a health care provider requires more background on what symptoms you are experiencing and how your life is being impacted by your condition. Make a list of talking points that you would like to discuss with your health care provider. A list of talking points will help you remember to mention details that may be important for your health care provider know.
  • Show and Tell: Your appointment is your time in the spotlight. Share any information that you feel may be helpful in treating your condition. Bring a list of your current medications with you to review with your health care provider. If you are having trouble with a piece of medical equipment (like a CPAP machine or nebulizer), feel free to bring it with you so they can teach you how to use it properly.
  • Consider the “buddy system”: Doctor’s visits can provide a wealth of information on your condition. Health care providers can provide feedback, tips, and a plan of care. All these things mount up to a ton of information for the patient to digest. It is easy to miss some important details while you are chatting with your healthcare provider. Consider asking a friend or loved one to come with you to your visit. Having a second set of ears to listen and perhaps take notes may help to catch details that may be missed or forgotten. You can review these details at home together to make sure the advice of the health care provider is implemented and that you are clear on a plan of care.
  • Be an active listener. Active listening requires that you fully concentrate on what is being said rather than just passively “hearing” the message of the speaker. Be sure to use eye contact, nod your head when you understand, and refrain from doodling or fidgeting. Feel free to stop the speaker if you don’t understand and ask questions for clarity. I find it helpful to use phrases like, “What I am hearing you say is….” or “This is what I am hearing…. Is this correct?” These types of statements signal to your health care provider that you do or don’t understand the information and feedback that they are giving. At times, it may inspire them to convey things differently. Remember, there are no “stupid questions” when it comes to understanding your plan of care.

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Categories: Quality of Life

Sleep and Healing for NTM/Bronchiectasis Patients

Posted on August 17, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Initiative Content Review and Evaluation Committee.

Sleep impacts every part of our lives and our health. It is essential for immune health and overall psychological and physical health. Sleep is a time for our bodies to rest and repair on a cellular level, for the brain to detoxify, and it helps regulate our hormones and neurotransmitters. Sleep is our greatest recovery tool.

We cannot achieve optimal health if we aren’t sleeping well. When we’re sleep-deprived it is hard to think straight, stay in a good mood, or have a positive outlook on life. On the other hand, a good night’s sleep empowers the body to recover and allows one to wake up somewhat refreshed and ready to take on the challenges of the day.

Insufficient sleep and poor-quality sleep can be due to diverse factors including medications, food sensitivities, chronic medical issues, possible neurodegenerative issues, angst, or depression. Vitamin deficiencies can impact the production of neurotransmitters and sleep patterns.

Many have experienced sleep issues throughout the pandemic due to social isolation and financial concerns- these are issues which many patients with chronic disorders deal with on an ongoing basis.

Between 10% and 30% of adults struggle with chronic insomnia. The numbers are even higher for seniors — 30% to 48% suffer from insomnia. Women have a lifetime risk of insomnia that is as much as 40% higher than that of men.1

In the beginning of my NTM journey, sleep was never an issue. I was so exhausted from infections stealing my nutrients and my body fighting the inflammation that I slept like a baby at night. Over time, and not in an acute infectious state, sleep became an issue.


How We Sleep

Sleep progresses through a series of four stages in which different brain patterns are displayed: three non-rapid eye movement (NREM) stages and one rapid eye movement (REM) stage.

Stage 1, “drowsiness,“ is the transition period between wakefulness and sleep. It’s easy to wake a person during this period. Stage 1 is essentially the “dozing off” stage.

In stage 2, “light sleep,” the brain begins to produce bursts of rapid, rhythmic brain wave activity known as sleep spindle. Body temperature decreases, heart rate slows, muscles relax, and breathing slows. People spend approximately 50% of their total sleep in this stage.

Stage 3 sleep is also known as “deep sleep”. It is harder to wake someone up if they are in this phase. Muscle tone, pulse, blood pressure, and breathing rate decrease as the body relaxes even further. This stage is critical to restorative sleep, allowing for bodily repair, recovery, and growth. It may also bolster the immune system and other key bodily processes. We spend the most time in deep sleep during the first half of the night. From deep sleep, we go back to stage 2 sleep before entering REM sleep, stage 4.

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Categories: BronchandNTM360social Tips

Nutrition and Markers of Disease Severity in Patients with Bronchiectasis – A Bronchiectasis and NTM Research Registry Study

Posted on August 04, 2021   |   
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This blog post was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

Bronchiectasis is a lung disease characterized with enlarged airways that are thickened and/or dilated. Individuals that have bronchiectasis typically have a cough that is usually productive with mucus. Recurrent lung infections or exacerbations can plague those with bronchiectasis. Recently, there has been more awareness of bronchiectasis likely from improved testing techniques which have allowed physicians to recognize and diagnose those with the condition. Interesting data shows that individuals with bronchiectasis live all over the world, are diverse in age groups, and other demographics. This has made studying bronchiectasis to find new therapies and treatments a challenge.

One way to classify bronchiectasis is by severity. The Bronchiectasis Severity Index (BSI) uses information about individuals with bronchiectasis like body mass index (BMI) to predict patient risk of hospitalization and prognosis. BMI is a measure of body fat based on height and weight that applies to men and women. It is an inexpensive, easy method for categorizing weight – underweight, normal/healthy weight, overweight, and obese. There have been several studies that suggest that if an individual with bronchiectasis is underweight or suffers from malnutrition, they have a higher rate of exacerbations, hospitalization, and mortality.1-3 Thus, better nutrition may be beneficial for managing and coping with the diagnosis. Therefore, if poor nutrition is associated with poor outcomes, improving nutrition of bronchiectasis patients might help to improve or prolong the progression of bronchiectasis lung disease.

Researchers at the University of North Carolina in Chapel Hill recently conducted a study using data from the U.S. Bronchiectasis and NTM Research Registry (BRR). The goal of the study was to assess the relationship between nutritional status of non-CF bronchiectasis patients enrolled in the BRR and other markers of bronchiectasis severity. The study took place using patient data from the BRR over a span of 5 years. Patients were categorized based on their BMI into four groups: underweight, normal/healthy weight, overweight, and obese. The data analyzed for each group included: number of exacerbations and hospitalizations over two years, PFT results, history of hemoptysis (coughing up blood), and history of lung resection (surgery to remove part of a lung or an entire lung). Other patient information like age, gender, race/ethnicity, infection with pseudomonas aeruginosa and/or NTM, smoking status, underlying causes of bronchiectasis, as well as coexisting conditions were also evaluated.

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Categories: Awareness

Vitamin D and Its Importance for Respiratory Patients

Posted on July 06, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate.

Vitamin D, also known as the “sunshine” vitamin, is vital to your physical and mental health. Although it has the word vitamin in its name, vitamin D is technically a hormone. It is an essential fat-soluble nutrient. Unlike many other essential nutrients, your body can make vitamin D, synthesizing it when your skin is exposed to the sun. You can also get it through foods and supplements.

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Categories: Quality of Life

Facing a Post-COVID World as a Bronchiectasis/NTM Patient

Posted on June 02, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate.

The COVID-19 vaccine has proven to be 94-95% effective in preventing coronavirus infection.1,2 This is good news, but it’s important to keep in mind that there is still a chance that you could become infected with COVID-19 or one of the variants. Positive results regarding the vaccine’s effectiveness are allowing for decreased restrictions throughout the United States. As people begin to engage again, adhering to the Centers for Disease Control (CDC) guidelines is of utmost importance, as we are still awaiting herd immunity within our communities. Be on the lookout that these guidelines are constantly changing.

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Categories: Awareness

Long-Haulers Syndrome, The Post-COVID Infection Journey

Posted on April 14, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate.

Long-haulers syndrome can affect anyone who has been affected by a serious illness — young, old, those who were healthy, those who have had a chronic condition, those who have been hospitalized and those who have not.


What is Long-haulers Syndrome?

Long-haulers syndrome related to COVID-19 is characterized by long-lasting symptoms which often include coughing, tightness in the chest, shortness of breath, headaches, muscle aches, and diarrhea. The most significant symptom that is being seen in coronavirus long-haulers syndrome is fatigue; this group feels very run down and tired. Patients with this syndrome may not be able to exert themselves or exercise, and simple tasks could leave them feeling exhausted with debilitating and frustrating chronic fatigue-like symptoms. Many long-haulers also report brain fog, difficultly concentrating, or feel as if they aren’t “as sharp as they used to be.”1

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Tags: COVID-19 Long-Haulers
Categories: Awareness

Hope is here with COVID-19 vaccinations — a few myths and facts on the vaccinations

Posted on February 12, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate and reviewd by the Bronchiectasis and NTM Initiative Content Review and Evaluation Committee


Do you have concerns about getting the COVID-19 vaccination? Many myths, misinformation exist on social media, the news, newspapers. Below are a few of the most common myths and facts for you to ponder.

Myth #1: The vaccine contains harmful ingredients.

Fact: There is no evidence of the vaccine containing harmful ingredients.

"There are no harmful ingredients associated with the COVID-19 vaccines," according to Graham Snyder, MD, MS, Medical Director, Infection Control and Hospital Epidemiology, University of Pittsburgh Medical Center, in their online health newsletter. "The Pfizer-BioNTech and Moderna vaccines are different from traditional vaccines. Instead of containing weakened or inactive portions of the virus, the Pfizer and Moderna vaccines contain messenger RNA (mRNA). Using genetic code, these vaccines teach your body how to make select components of the virus, which triggers the immune system to attack and destroy it."

"Although these are the first examples of mRNA vaccines, the technology surrounding mRNA is not new. Data on the Pfizer and Moderna vaccines suggest they are safe, but they will continue to be monitored,"1 writes Snyder.

The COVID-19 vaccine may cause side effects similar to signs and symptoms of COVID-19. If you've been exposed to COVID-19 and you develop symptoms more than three days after getting vaccinated or the symptoms last more than two days, self-isolate and get tested.2

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Tags: Bronchiectasis COVID-19 NTM vaccinations
Categories: Awareness

Gratefulness — Going Forward in 2021

Posted on January 12, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Gratitude and attitude are not challenges; they are choices. -Robert Braathe, business trainer and author.

Gratefulness is so important, now more than ever. Let's use our 2020 vision and sense of gratitude to make 2021 the best year possible. This is a time to reset. Yes, we definitely have challenges with our respiratory issues and limitations; however, we can work on keeping on . . . in the best way we can.

We can seek the support we need from others who have been down the path before and continually learn from them.  BronchandNTM360social allows you to post publicly (or message other members privately) to get answers that may save you days, months, or years of difficulty or unnecessary suffering. We want to support and empower you to make the very best choices on your path to wellness in the days ahead.

We must see the silver lining of the current days and recognize that what we are going through is truly eye-opening. 

A few lessons learned — positive gifts received:

While we have been quarantined, we have had access to internet, zoom, and audio/visual devices. We are not living as they did in other times of great difficulty, such as world wars, without access to robust communication means.

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Tags: Bronchiectasis COVID-19 gratitude NTM
Categories: Quality of Life

This Holiday Time: Activities That Put You First

Posted on December 01, 2020   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Do you feel misunderstood with your concerns and fears about your chronic lung disease and the coronavirus? Do other people compare their current lockdown experiences to yours?

For many NTM/bronchiectasis patients, our lung diseases are invisible; the COVID-19 virus is also invisible. The coronavirus can spread like wildfire before a person exhibits symptoms.

Family and friends may not understand our fears and concerns since they do not live with a chronic lung disorder and may not understand the increased risks that people with chronic diseases confront amid the added challenge of a killer virus. But as our country continues to face the limited social interaction of this pandemic, the coronavirus may give the general public better insight into — and understanding of — what patients with chronic illness deal with.

For example, many of us have lived “quarantined” to a certain degree for years; I know that I have. I can recall, more than a few times, declining an invitation for coffee with someone who casually mentioned on the phone that they are recovering from a cold or that their child is home from school with the strep throat. Our “normal” is not the same as everyone else’s – whether you’re thinking of pre-COVID times or even now more so than ever.

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Categories: Quality of Life

Fall Precautions for NTM/Bronchiectasis Patients During the Covid-19 Pandemic

Posted on October 22, 2020   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Fall is upon us; winter is approaching. Days are getting shorter with less sunlight and cooler temperatures. This can be a very challenging time of year if you are mostly homebound and especially difficult as we deal with the challenges of the pandemic. We are making history with the COVID-19 quarantine.

We have restrictions, yet we can still reach out to others.

Consider join some type of community organization — whether it is a church or synagogue group, a meet up group, a library, a recreational center — where you can chat with friends (safely in person or virtually) on a weekly basis. We all need something to look forward to and to have a sense of connectedness. Consider whether you can develop a 6-foot distance relationship with a neighbor if you have not already done so. Speaking with someone (rather than texting) for a few minutes a day is very therapeutic for both the mind and the body. It is ideal to speak with positive, understanding people about your present concerns. Avoid spending time speaking with negative people.

Focus on what is possible. If we think creatively, canceled events can turn into new opportunities of working with others.

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Categories: Awareness

Being a Patient with NTM/Bronchiectasis Can Seem like a Fulltime Job - Tips on Navigating Doctor Office Visits

Posted on September 23, 2020   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

For many patients, having NTM can turn into a fulltime job—and then some. Outsiders cannot comprehend some of the tasks we deal with unless they have walked in our shoes. Many of us must continue the tasks, week after week for an extended period of time. Not only do we not get paid a penny for this work, we also are left to deal with diminished earnings from our previous jobs and careers, time lost with our friends and families, and an overall lower level of social life and recreational activities.

Some patients do get well, go into remission, and can resume a normal quality of life. Others are bombarded with recurrent NTM infections and or other respiratory infections on an ongoing basis.

To begin with, scheduling a doctor’s appointment these days can take up to 20 minutes after you give the scheduler your insurance information and demographics data each time you call, even if it is in the computer system from a few months ago. Hopefully, you will be able to do a telehealth office visit due to the corona virus threat. Doctor’s office staff will assist you with setting up telehealth visits if needed.

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Categories: Awareness

Airway clearance techniques in bronchiectasis: Analysis from the Bronchiectasis and NTM Research Registry

Posted on July 15, 2020   |   
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This blog post was written by Dr. Ashwin Basavaraj, who serves as Pulmonologist at NYU Langone Health, Assistant Professor in the Department of Medicine at NYU Grossman School of Medicine, Section Chief of Pulmonary, Critical Care and Sleep Medicine at Bellevue Hospital, and Associate Director of the Bronchiectasis Program at NYU.

Airway clearance techniques (ACTs) are important management strategies in the care of patients with bronchiectasis and non-tuberculous mycobacterial (NTM) lung disease. ACTs may help bring up mucus that often times are difficult to clear from large airways. This may, in turn, help reduce inflammation, and improve symptoms and quality of life. ACTs include the use of instrumental techniques, such as positive expiratory pressure devices and high frequency chest wall oscillation vests, and various manual techniques, such as manual chest physical therapy, chest percussion, postural drainage, and active cycle breathing techniques.

Although ACTs are widely recommended by guidelines and expert opinion, high-quality research studies on the utility of ACTs are lacking. Moreover, reports suggest that ACTs are under-utilized by patients, and rates of adherence are not high. Further studies are needed comparing the effectiveness of different ACTs, as no one technique has shown to be superior to another.

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Categories: Research

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