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

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.

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

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.

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).

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.

Recent research suggests that bronchiectasis is more common than previously thought¹, and you or someone you know may be living with this condition. We hope that this article will help to increase your knowledge of bronchiectasis and how it can overlap with COPD. There is power in knowing more about the ways these conditions can be treated to help one live better. This knowledge can also help increase awareness and improve communication between families, friends, and health care providers.

In addition to the details contained in this article, here are a few places to find more information. The Healthy Body, Healthy Mind video series includes an educational program titled Solutions for COPD and Bronchiectasis Patients, which can be viewed by clicking the link. Resources from the COPD Foundation include COPD360social and BronchandNTM360social websites, which host online social communities for members to communicate, share experiences and ask questions. These sites also include many articles, helpful blog posts, educational materials, and information about the COPD Foundation’s research programs.

The name ‘Bronchiectasis’ is derived from the Greek term “bronkhia,” meaning branches of the lungs’ main bronchi (aka airways), and “ektasis,” meaning dilation. Recent research estimates that 340,000-522,000 adults received treatment for bronchiectasis in the United States in 2013¹. Bronchiectasis develops when the airways are dilated (widened). When this occurs, the lungs struggle to clear themselves of mucus. When mucus is not cleared from the lungs, bacteria can build up. This environment in the lung may lead to repeated lung infections and cause more damage to the already impaired lungs.

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

Summary taken from presenter Rachel Thomson, PhD, MBBS, NTM/Bronchiectasis Patient Conference, May 2019, entitled Environmental Factors & Reducing Exposure

Awareness and prevention of NTMs has changed over the years. While it has been widely known that NTM is widespread in the environment, only more recently are physicians and researchers becoming more interested in where the bacteria actually live and thrive. Research has been conducted to determine this, but more studies are necessary. In addition, to further complicate this issue, not all NTM species have been associated with NTM lung disease. The question patients and their care team face daily is if these organisms are everywhere, how do we control our exposure and prevent new infections? To further complicate the issues, NTM organisms are ubiquitous and are resistant to chlorine, chloramine and chlorine dioxide, which are all used in the disinfection process. In fact, it NTM organisms can grow within the very small diameter within water pipes. Unfortunately, NTM is found in many places, some of which may surprise you. There is hope in preventing infection and precautions that can be taken to prevent contact and ultimately new infection. Rachel Thompson, PhD, MBBS spoke at the NTM/Bronchiectasis Patient Conference in May 2019, about the environmental factors of NTM and reducing exposure. Dr. Thompson's presentation is publicly available here.

Nontuberculous mycobacterial (NTM) lung disease is caused by serious infections brought on by bacteria that exist in the environment. There are many different types of NTM, but mycobacterium avium complex (also known as ‘MAC’) is the most common. MAC is a type of mycobacteria that is naturally found in soil, water and dust and can affect the lungs, creating shortness of breath, fatigue and cough, to name a few symptoms. MAC is currently treated with a multi-drug regimen, usually 3 or more antibiotics, taken for 18 to 24 months. Side effects of this multidrug regimen may be severe, typically including nausea and diarrhea. As one can imagine, both the disease and its lengthy multidrug treatment can impact patients’ quality of life.

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

Eating, breathing and feeling better are part of our daily goals and activities of daily life. What we consume on a daily basis definitely impacts our health and how we feel. A good diet can help to prevent respiratory infections and give our body the energy it needs to do the work of breathing and staying active.

As Hippocrates once said, “Let food be thy medicine and medicine be thy food.” We all wish it were magically possible to eat the right food and to feel better overnight. However, small steps made daily can help you on the road to feeling more energetic.

We must consume the vitamins and minerals our bodies need on a daily basis. When the number of calories taken in is too low to meet a person’s energy needs, the body breaks down fat and muscle for energy. This begins a negative cycle and could cause the breathing muscles to weaken and lead to shortness of breath. This could then lead to decreased appetite and weight loss and the cycle repeats itself¹.

Your body produces more carbon dioxide when it breaks down carbohydrates. The extra carbon dioxide must be exhaled so when our meals are heavy in carbs, breathing can become more difficult².

This blog post was written by Gretchen McCreary, Research Coordinator, COPD Foundation

The Food and Drug Administration (FDA) held a successful workshop on April 8, 2019 entitled, Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease. The workshop panelists included experts in their fields of NTM and Patient-Reported Outcomes (PROs). The goal of the workshop was to discuss clinical trial design related to the advancement of antibacterial therapies to treat NTM. Among the topics discussed, the panelists presented on and delved into the patient perspective for treatment of NTM, lessons learned from completed NTM trials and the implications for future trials, use of patient-reported outcome measures in NTM trials, as well as academic and industry perspectives on various case studies.