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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

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.

We will continue to use telemedicine, unless in-person visits are necessary (we do acknowledge that unfortunately, not everyone has access to telemedicine).

We can recall the compassion and empathy expressed by friends and family members as they realized how challenging and lonely daily life can be in isolation, while living with a chronic illness. Many took their lifestyles for granted before the coronavirus and had never been homebound for any extended length of time.

People are more mindful of their own health and preventative measures to keep their immune systems in the best shape possible. Much information is being presented in the media every day about vitamin D and other supplements that boost a person’s immunity.

Most people are eating more nutritious meals at home since many are not going anywhere. Cooking skills have been sharpened with family members. While most of us do not have the energy to prepare three meals a day, we can now work out more efficient ways for healthier meal planning with family members.

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.

When it comes to the upcoming holiday season we must be assertive and protect ourselves, even if that means not hosting others or attending a gathering at someone else’s home . Learn to say “no” now so that you can say “yes” later. Don’t become a victim of the present circumstances, become a victor. You are the only one who will be enduring the challenges if you do become ill.

In the meantime as we await for a vaccine and more therapies in the pipeline to become available, here are some suggestions of things you CAN do to feel more in control of your circumstances and put yourself first. It’s not selfish; it’s smart.

Purchase a pulse oximeter, blood pressure machine and thermometer if you do not already have one. A pulse oximeter can alert you if your oxygen levels are changing and it is always wise to know your regular blood pressure readings. Symptoms of COVID often mimic other health issues.

Try to adhere to a schedule and do something meaningful each day to derive a sense of purpose. A simple change of clothes can make all the difference. A few safe and emotionally rewarding ways to spend time are listed below:

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.

Exercise — a walk, yoga, whatever you are capable of — to detoxify your system. Perhaps consider putting on your headphones, listen to motivational music whether you are walking miles or just doing arm exercises in a chair. A few of my upbeat and inspirational favorites are Gloria Gaynor’s I Will Survive, Bee Gee’s Staying Alive, and Rocky Balboa’s Eye of the Tiger. Start a new hobby, such as crocheting, take a virtual tour around the world, see National Geographic website, https://www.expeditions.com/destinations/virtual/

We must stay positive; we all have been through many difficult times before and have found relief. Consider making your bucket list for when we get to the other side of the coronavirus challenge (and we will!). Maintain a sense of purpose, whatever that means for you. This page on the Mayo Clinic website includes information on coping through the coronavirus pandemic in an effort to maintain your mental health. Similarly, this page on the CDC website includes information on coping with stress during the pandemic.

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.

If you must enter a doctor’s office- please use all possible infection-control preventative measures while at the doctor’s office . Bring tissues or paper towels to open the doors, to push the elevator button. Wear your mask, double mask if you can tolerate it. Bring your own pen with you and Clorox wipes since you may have to fill out forms, touch the computer screen. Use gloves, but remember to dispose of them properly if you touch any possible contaminated surface. Wash hands as soon as you are finished , use a paper towel to get soap and to turn off the water faucet. Remember, do not touch your face.

Be prepared with a detailed history of the onset of your current symptoms—type of cough, time of day you cough the most, color and quantity of mucus, etc. Discuss coughing triggers, if any exist. Be prepared with the list of medications you are currently taking; discuss which ones are effective. Ask about the potential side effects of the medications and how your doctor will monitor you with lab tests and referrals to specialists, such as an audiologist or ophthalmologist, as needed. Mycobacterium compete with our body’s nutrients, resulting in weight loss and fatigue from not getting the nutrients we desperately need. Please report any drops in weight.

It is important to describe how your current symptoms impact your daily life. Just saying “I feel tired” is too broad, vague of a description. No one can really envision what your life is like behind closed doors if you do not describe how your life is dramatically changed by your illness. Many of us with NTM look normal; NTM is another invisible disorder for many patients. A detailed description of ADLs—(activities of daily living) and IADLs (instrumental activities of daily living) can assist you in describing how your daily quality of life is impacted. Below is a few links that may provide a foundation to assist you:

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.

This blog post was written by Katie Keating, RN, MS, patient advocate

It has been a long, challenging spring since the news of a quarantine hit in early March. The coronavirus outbreak was a huge adjustment for most of the world. For many of us, however, the change was not as drastic, and we did not have to make too many adjustments. People with NTM and bronchiectasis have been practicing infection-control measures for years and faced aloneness and loneliness from social isolation long before the pandemic hit. Many of us have dealt with the challenges of living with an invisible disease. Many never realized, dealt with or grieved the multiple losses we faced — career, financial, and social life losses due to the onset of a chronic lung disorder.

The general public is now grieving the abrupt changes and anticipatory modifications in their lives. This will hopefully be a short period of time for them, in comparison to others living in semi quarantine for life.

As part of our diagnosis, some of us have been left to deal with our losses silently and adapt on our own. Since most did not understand this invisible disorder, I was told to “put your big-girl pants on” when I was first diagnosed. Now that the general public has experienced the loss of social interaction because of living in quarantine, they may now have insight into what patients with invisible chronic disorders such as ours have been dealing with for some time. Give yourself permission: it is okay, even beneficial, to take the time to grieve for such loss of life as “normal” and provide yourself the needed self-care.

I was fortunate to find the New York City support group a year after my symptoms began. We shared our experiences and found that many doctors did not inquire about our emotional wellbeing at that time; many patients just went home feeling isolated. No real pity was offered by former coworkers, friends, and family. Easy shame was given and associated with a chronic invisible illness. Shame may lead to depression as well as lack of hope for some patients.

How are we going to go forward from here? We are witnessing people literally throwing their masks away and behaving as if nothing ever happened. They have no idea what it is like to live daily with a chronic lung condition and the impact it may have on the individual’s life. Social distancing is a sacrifice, yes, but we help one to help another.

I do not feel comfortable taking a risk at this point of time. I will continue wearing a mask; I will take every infection-control precaution possible until we have more medications on board and an effective vaccination.

Written by: Delia Prieto, Danielle Boyce, Bill Clark, and Ruth Tal-Singer

The COPD Foundation (COPDF) continues to monitor coronavirus 2019 (COVID-19) and the way it is impacting chronic lung disease communities. We are providing resources to the community based on needs expressed through a series of surveys we are conducting throughout the COVID-19 pandemic. The COPD Foundation COVID-19 resources include a blog post being updated regularly, a series of live webinars (which are recorded and transcribed), a lengthy list of questions/answers important for the community, and important guidance information from the Centers for Disease Control and Prevention (CDC).

In late March, we launched a global survey aiming to evaluate the experience of individuals affected by chronic lung diseases during the COVID-19 pandemic. This was the first of a series of surveys we are deploying to learn about how the COVID-19 pandemic is affecting our communities. We reported some highlights of Survey #1 in a COPD Digest post, which can be found here. In late April, we launched Survey #2, which included the same questions from Survey #1 as well as more detailed questions about the effects the pandemic is having on the community. The survey was live for a little longer than one month and was completed by 776 respondents.

Below are some highlights of the results from respondents who reported having bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease. For the purposes of this article, we will refer to NTM Lung Disease as ‘NTM’. Additionally, it is important to note that not all respondents answered every question, so the percentages reported reflect only the respondents who answered that particular question.

Written by patient and advocate John Torrence

Which way is up? In this new crazy world of Coronavirus, we are being told not to go to work, to stay away from everyone, and just sit at home. Meanwhile, the bills keep coming in the mail.

For me, the world changed while I was on a road trip, 450 miles from home. I had been aware of this new virus in China, but suddenly it took over. The only talk on the TV and online was about this new virus, and the president decided it was the national priority. It is hard to know when the press is making a big deal about a small matter, and there is a long history of them doing it. My initial reaction was that things were overblown, and that we just needed to get on with our work and daily lives.

But then the death count started rising. First oversees, then here in the US. Again, I tried to use my rational mind. People die every day, from smoking, from accidents, from heart attacks, from the flu. When the doctors say that 200 people died today – that is in a country of 328 million people. But the next day, the death count doubles, and doubles again. That is something the flu death rate does not do.

I want to believe I am a young, healthy male, capable of doing a full day's work, climbing mountains, enjoying the physical world. In truth, I am a 61-year-old male, with one lobe of my lung removed due to bronchiectasis, and an eleven-year history of nontuberculous mycobacterial and other miscellaneous pulmonary infections. I use a nebulizer and vibrating vest twice a day to keep my lungs clear, and my pulmonary health is always foremost in my mind. I get tired walking across the street, so let's forget climbing mountains.

The COPD Foundation continues to monitor the outbreak of the novel coronavirus disease (COVID-19). As time progresses, our medical and scientific experts learn more how the disease behaves, and they continue to provide important information and recommendations to our community.

What is COVID-19?

COVID-19 is a new disease caused by a novel coronavirus that is different than the common cold, flu, or pneumonia. COVID-19 is spread from one person to another through respiratory droplets that are spread when an infected person sneezes or coughs from less than 6 feet away. One can also be infected from touching contaminated surfaces and then touching the eyes, nose and/or mouth.

Symptoms of COVID-19

According to the Centers for Disease Control and Prevention (CDC), reported illnesses have ranged from mild symptoms to severe illness and death for confirmed COVID-19 cases. Symptoms include fever, cough, and shortness of breath. These symptoms may appear 2-14 days after exposure.

The CDC recommendations on when to seek medical advice are: if you develop symptoms and you have been in close contact with a person known to test positive for COVID-19 OR If you live in or have recently been in an area with an ongoing spread of COVID-19. The CDC is actively monitoring COVID-19 and will update guidance as new information becomes available. For more information and guidelines from the CDC visit www.cdc.gov/COVID19.

Who is at risk?

Because this is a new virus, no one has any built-in immunity which makes everyone at risk of contracting COVID-19. Older adults, especially those with underlying medical problems including heart and lung disease and diabetes, are at a much higher risk of severe complications. Younger and generally healthy people can and have contracted the virus. While they are less likely to develop severe problems, severe problems have been seen in younger people. Everyone needs to take appropriate precautions.