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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.

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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.

In our study, we sought to analyze clinical outcomes in patients with productive cough and bronchiectasis, utilizing the United States Bronchiectasis and NTM Research Registry. Patients were divided into three groups: 1. Patients that did not use ACTs at their baseline visit and at one-year follow-up visit (no ACT use), 2. Those that used ACTs at both baseline and one-year follow up (continuous use), and 3. Those that used ACTs either at baseline or at one-year follow-up (intermittent users). Patients in the Registry were seen clinically from 2008-2019.

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Categories: Research

Re-entering the outside world as a bronchiectasis NTM patient

Posted on June 30, 2020   |   
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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.

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Categories: Awareness

Highlights from COVID-19 Survey #2: Pandemic Impact on the Bronchiectasis and NTM Community

Posted on June 16, 2020   |   
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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.

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Categories: Research

COVID-19: One Patient's Personal Account on the Effects

Posted on May 01, 2020   |   
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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.

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Categories: Quality of Life

COPD Foundation Resources on Coronavirus (COVID-19)

Posted on April 06, 2020   |   
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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.

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Tags: Awareness coronavirus COVID-19 NTM
Categories: Awareness

Coronavirus and the NTM Patient

Posted on March 30, 2020   |   
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Do you find yourself living in great fear since the outbreak of the corona virus?

Fear can paralyze us and create anxiety when we feel out of control. But we can also find an opportunity to practice letting go of the control we think we have. Awareness of our limits in the here and now is the antidote. I believe that we must accept the things we cannot change. And, we must change the things we can. For example, infection-control procedures in your home, getting involved in diversional activities, helping others, if possible, instead of focusing on all the media and news.

Ask yourself what is of utmost importance at this moment in time, and then prioritize the tasks.

Below are several suggestions to assist you throughout this challenging time:

  • Take one day at a time. If you haven’t been doing airway clearance/diaphragmatic breathing exercise, this might be the time to consider it, if advised by a healthcare provider. I have taken out my flute and am playing it twice a day. I also do basic yoga poses. Walking is a nice way to get exercise, so long as you do not come in contact with others. Practice meditation, mindfulness. Below are links to a few apps/devices that you may find useful during this time.
  • Get up and get dressed as you were going out.
  • Communicate to family and friends how very important it is to you that they work with you to stay well and keep you well; enlist their support. Try to reduce your exposure to the virus-explain your risk to family and friends. Explain to them that there is no cure at the present moment and it can be very dangerous to those with underlying lung conditions like NTM.  We must be hyper vigilant since the symptoms may not show up for days after exposure to the coronavirus; it can live on surfaces for hours. Younger people are now getting sick with the coronavirus; it just does not impact people with lung disorders and the elderly.
  • Speak openly and honestly with family about caregiving scenarios and detailed plans in the event that you or one of your family members or you becomes infected. Designate a room for the sick person.
  • Do not touch eyes, ears, nose, and mouth.
  • In public — if you must go out to a store, bring your own hand sanitizer. Purell in a dispenser is no good if the store doesn’t have a box of tissues next to it to push the pump with. Touching the top of the Clorox disinfecting wipes is not good either. Carry tissues with you and use a tissue to open the container. The virus can live for several hours on most surfaces.
  • Pubic bathrooms — Do not touch a public soap dispenser without a tissue or piece of toilet paper. Use a paper towel or piece of toilet paper to flush the toilet, to turn off water, and to get paper towels from the dispenser.
  • Home bathroom — Use your own hand towel in the bathroom as you would if family members were sick with the flu.
  • Home kitchen — Have your own kitchen towel to touch appliances such as the sink, microwave, oven, or refrigerator that other family members use, especially if other family members are still going out to work and or to the grocery or drug store. Be mindful of family community condiments, such as salt/pepper shakers, ketchup. Also, kitchen drawer knobs, light switch, etc.
  • Home doorknobs — Use a paper towel, towel, or Clorox-type disinfecting wipe, Sani-wipes to open them.
  • Clean all other possible contact surface areas regularly.
  • Bedroom — if your husband/wife/significant other is still going to work, ask your partner to wash and sanitize hands and change clothing upon coming home. You may even want to suggest that he/her take a shower upon arriving home from work. Wash clothes in hot water immediately if possible.
  • Order supplies — If possible, consider having on hand a 90-day supply of meds, such as nebulizers, nebulizer tubing, masks, .3%normal saline, alcohol wipes, thermometer, oximeter, mucinex, Tylenol.

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Categories: Awareness

COVID-19, COPD and You: Important Strategies from Leading Medical Experts on Managing Your Health

Posted on March 18, 2020   |   
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COVID-19, COPD and You: Important Strategies from Leading Medical Experts on Managing Your Health

The COPD Foundation wants you to know you are not alone during this time.

On March 17th, we hosted a webinar that provided updated medical information about managing your chronic obstructive pulmonary disease during the COVID-19 (Coronavirus) pandemic.

This webinar featured leading medical and public health experts including Dr. Josh Sharfstein from the Johns Hopkins Bloomberg School of Public Health, Dr. Robert Wise of Johns Hopkins University School of Medicine and Dr. Byron Thomashow from Columbia University/New York-Presbyterian Hospital, along with COPD Foundation staff members, Stephanie Williams and Jamie Sullivan.

The speakers addressed the most common questions we received about the coronavirus and COVID-19, including what we know and don't know about the disease, signs, and symptoms people with COPD should watch, practical action to prevent the disease, tips for maintaining your emotional well-being and resources for credible information.

You can now access the recording of the webinar from your computer, tablet or smartphone. You will be asked to enter your name and email address to join. If you are unable to access the recording on your device, please contact statecaptains@copdfoundation.org for assistance.

Join us in learning how we can face this crisis together.

Access the recording here: https://attendee.gotowebinar.com/recording/8346133687330994690

Sincerely,
The COPD Foundation Team

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Tags: COVID-19
Categories: Awareness

My Journey with Lung Disease: Referral and Initial Treatment

Posted on March 04, 2020   |   
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So I take my new IV machine home, along with two types intravenous medication, one to be injected twice daily through the machine and the other delivered through pressurized bottles not needing to go through the IV machine three times weekly. In addition, I need to take 500 mg of an oral medication daily. The long list of potential side effects include all sorts of gastro-intestinal discomfort and potential hearing loss. Through my own research with Dr. Google, the first intravenous medication was the hot new drug that stood the best chance of success, so I was happy (in a weird, medical sort of way) that the doctor had chosen to give me the cutting edge medicine. The second intraveneous medicine is an old school antibiotic not used very often in modern times, but it is the most effective medicine with NTM, from what I have seen so far. It is also the medicine that directly threatens my hearing. I do remember the doctor saying I would need a baseline hearing tests, and follow up tests every few months. Essentially, he gave me a choice between hearing and breathing.

With the Peripherally Inserted Central Catheter (PICC) line installed, machine plugged in, bathroom taken over by cases of medicine and supplies, I am ready to finally fight back against this crazy disease that has plagued me for three years. I am determined to take every dose of medicine and follow every bit of advice. Within a week, I find that the hot new medicine really throws my digestive system for a loop. I am begging the doctor for anti-nausea medicine and spending lots of time in the bathroom. Let's just say that food doesn't spend a lot of time inside of me. The course of treatment for this medication is eight weeks, so I perservere.

When you have a PICC line, you see the doctor every week, plus have weekly bandage changes. The place where the PICC line goes into your body needs to be kept dry and sterile, and requires daily attention. The PICC line needs to be flushed daily with saline, even if you are not taking any medicine. Due to the toxicity of the drugs, I also had twice weekly blood tests. Essentially, half of my waking hours involved dealing with medicine, doctors, machines, pharmacies, and bathrooms.

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Categories: Awareness

My Journey with Lung Disease: Family Connection

Posted on December 20, 2019   |   
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Written by patient and advocate John Torrence

The Infectious Disease doctor told me that this is an extremely rare condition, yet all of his big words sounded strangely familiar. My mother has had a long history lung issues, so I called her and asked her to describe her symptoms and medications. The more she relays to me, the more I remember about her condition. I remember being at her hospital bedside a few years earlier. At 76, my mom was diagnosed with breast cancer and had to undergo a mastectomy. I stayed with her the whole weekend, and what I remember most was the continual stream of doctors coming into her room changing her prescriptions. The Rheumatoid Arthritis doctor put her on steroids. The Infectious Disease doctor took her off, due to her lung issues... Back and forth.

Mom told me she has MAC, which stands for Mycobacterium Avium Complex, and is the most common form of Nontuberculous Mycobacterium (NTM). I remember her joking about it being closely related to Leprosy! Now that's something that should get your attention. It turns out, the sturcture of the bacteria NTM, TB and Leprosy all have the same triple wall around the cell that protect them and make them very difficult to treat. So, structurally the three bacteria are similar, but their effects on the body are different. After we finished joking about my mom having Leprosy, she also mentioned that she has something called Bronchiectasis. In three years of going to doctors, I have not heard my doctors use that term, but I planned to find out what it was.

At my next Pulmonology appointment, I reported to the doctor everything my mom had told me. He seemed unimpressed that my closest living relative has the same rare disease that I have. I mentioned Bronchiectasis, and I asked if I have that as well, and if NTM and bronchiectasis were connected, but I didn’t get much helpful information from him. I did notice, however, that my after-visit report from him indicated that I had "Acute Exacerbations of Bronchiectasis.” I am not sure if he indicated this on the report because I had mentioned bronchiectasis or because I was indeed experiencing an exacerbation of bronchiectasis. I wasn’t sure what an acute exacerbation was, but it seemed like if I was experiencing one, he should have noticed long before I brought it to his attention. I started to become concerned about the doctor’s knowledge of my condition(s).

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Categories: Awareness

My Journey with Lung Disease: Initial Diagnosis

Posted on December 09, 2019   |   
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Written by patient and advocate John Torrence

We very much appreciate that a fellow BronchandNTM360social community member and NTM patient is willing to share his journey with us. He will take us through his initial symptoms, diagnosis, identification of a clear family connection, his experience at a well-known health center and what the future may hold. This is the first blog in a series where John will take us through his experiences with lung disease.

I cough. You cough. We all cough from time to time. Ten years ago, the coughing began, occasionally at first and soon with great frequency. I attributed this to a cold, allergies or dust from work. I took every medication in the flu and cold aisle and ate cough drops, “like they were candy,” according to my wife. My local physician attributed the cough to the same allergies, cold, etc. as I had. It did seem seasonal and by the third year I was able to start anticipating the cough.

Eventually, as for most, the cough became chronic and intolerable. I had an x-ray that showed a white line on my lung. The doctor declared Pneumonia and I was prescribed a 10-day dose of antibiotics. I had no relief and once again went to see my physician. This time I was prescribed another type of antibiotic. My exhaustion reached new levels and I was napping every afternoon, thinking I was tired due to my work schedule. My wife chalked it up to laziness. I was so physically tired from the coughing I stopped in at a clinic and insisted the doctor see me. Upon another chest x-ray, this doctor called me to come back in and to bring my wife along. I knew there was something much more serious than a cold going on inside of me.

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Tags: NTM diagnosis NTM Lung Disease
Categories: Awareness

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