This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

What is mold? Mold is another term for fungus. Mold grows inside and outside your home in places such as decaying vegetation, leaves, and damp wood. Mold multiplies by creating spores that can grow into mold when exposed to damp surfaces.

Mold spores can cause allergic reactions or infections, especially in people with suppressed immune systems or lung disorders. These two groups are at the highest risk of developing health problems after breathing in mold.¹

There are many types of molds. Some types of molds form colonies that can be seen with the naked eye, while others are only seen under a microscope. Outdoor mold peaks throughout summer and decreases following the first frost in cooler climates.

Causes: Mold allergy symptoms are triggered by a sensitive immune system. Your body senses the mold spores as invaders and develops antibodies to fight them. Bronchiectasis can result when the lung is injured from swelling or infection of the airways. Molds can be a common cause of non-cystic fibrosis bronchiectasis.²

Symptoms: Mold allergy symptoms can vary depending on the type of mold and the type of reaction you experience. If you inhale mold into your lungs, it can cause a condition called bronchopulmonary aspergillosis (ABPA). Symptoms of ABPA can include:

• coughing,
• wheezing,
• shortness of breath
• worsening of asthma symptoms.³

If ABPA becomes more serious, it can cause chest pain, cough, coughing up blood, shortness of breath, fever, and potentially life-threatening symptoms if it spreads past your lungs.³

Mold allergy symptoms can range from mild to severe. You can have year-round symptoms or seasonal symptoms. There is also a possibility of developing greater symptoms when the weather is damp or when you are in an area with higher mold counts^{. 1}

Diagnosis: Your health care provider will review your symptoms and your medical history. A skin test can be done to identify the specific mold causing the reaction. Your doctor may also run a blood test to look for fungal spores or antibodies in your blood. Additional testing may be performed like x-rays, CT scans, or bronchoscopy.¹

Treatment: Your health care provider may recommend treatment if you are experiencing mold allergy symptoms. Corticosteroid drugs often help open your airways. You may need to use them daily or only as needed. Sometimes your HCP will prescribe an antifungal medication.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Sunshine, warmer weather, and longer outdoor days are a highlight of summer. There are so many great parts of summertime but for those dealing with lung conditions, the summertime can leave you more prone to heat-related issues. Heat-related illnesses happen when the body is unable to regulate its temperature when the temperature outside is high.

Mild forms of heat-related illness include edema (swelling), muscle cramps, and heat rash (miliaria rubra). Swelling can occur in the lower body, specifically the legs and feet. This is usually relieved by elevating the legs. A heat rash is caused when pores in the skin that are covered with clothing become trapped with sweat.¹

If mild heat-related illness progresses, it can lead to heat exhaustion.¹ Some signs of heat exhaustion occurring include hot skin, little to no sweating, increased heart rate, confusion, and poor coordination. Heat exhaustion can also cause headaches, dizziness, nausea, or vomiting. These conditions can lead to heat stroke if they aren't treated.¹

Heatstroke, also called sunstroke, is the most severe form of heat-related illness. Heatstroke occurs when your body cannot cool itself down. It is caused when your body temperature reaches 104 or higher as a result of ongoing exposure to heat or exertion in high temperatures.²

There are 2 types of heatstroke: exertional and non-exertional. Exertional heatstroke usually results from being too active in hot, humid conditions. This can happen in as little as 2 hours. Non-exertional heatstroke occurs after exposure to hot, humid weather for long periods. Non-exertional heat stroke can occur due to age or chronic health conditions. It tends to develop over several days.²

Heatstroke Symptoms may include confusion, seizures, agitation, slurred speech, trouble walking, or loss of consciousness. High heart rates, headache, nausea, and vomiting are also symptoms.²

Risk factors that may increase your risk of heat-related illness include:

• Age
• Sudden increase in temperature, such as an intense heat wave
• Lack of air conditioning
• Drugs that affect your body’s ability to regulate temperatures (e.g., diuretics, sedatives, anti-depressants, heart and blood pressure medications) Talk to your pharmacist or health care provider if you are not sure if your medications impact temperature regulation.

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This post was authored by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

To be very honest, the topic of research and how to educate others on it gets very little attention when allied health professionals are training for their careers. In fact, in my short tenure here at the Foundation, I have learned more about research than in my 20 years of working at the bedside. There definitely are some misconceptions about research that I thought might need clarifying for our community. So, let’s talk about it!

Myth #1:
I will not see the benefit of participating in a clinical trial for years to come.

vs.

Truth:
In the short run, you may or may not. It is true that clinical trials will take quite a while to result in approved treatments, and you may not personally see a benefit during the trial itself. On the other hand, you may benefit from participating in clinical trials by getting access to treatment to which you would normally not have access. And in the long run, successful clinical trials are the only way to see new treatments approved for the disease or condition you may be living with. Clinical trials need to have heavy involvement from the patient community in order to prove that medications and/or other forms of treatment are effective.

Myth #2:
I need to live close to a research facility to participate in a clinical trial.

vs.

Truth:
Not all clinical trials need participants to live nearby. Some facilities or research sites will allow participants to take part virtually and have any necessary testing done at their local health care facilities. When a clinical trial is conducted, each trial will have guidelines for participation. Before participating, all details required by the participant will be reviewed and agreed upon. This way you can make an informed decision on whether participating will be right and convenient for you.

Myth #3:
Participating in a clinical trial will negatively affect my health.

vs.

Truth:
The goal of clinical trials is to advance research to improve the health of those with specific conditions. Yes, there are potential risks. There are also potential benefits to participating in a trial.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Occasionally we have questions from our community members about video-assisted thoracic surgery, also known as “VATS.” This is a surgical procedure used to diagnose and treat problems in the chest area when cheaper, less invasive options have not provided answers. Surgeons insert a thin instrument with a camera called a thoracoscope into a small incision in a patient’s chest. The scope allows the surgeon to view the inside of the chest. Being able to see inside the chest helps the surgeon guide and perform procedures.¹

VATS helps health care providers to

• Establish diagnoses or treat conditions, including infection or other processes, which involve the lining of the lung.
• Take tissue samples and examine them under a microscope.
• Remove small parts of the lung for diagnostic purposes.
• Remove a large section of the lung to treat select lung conditions or infections.²

Before a VATS procedure. Patients will be given instructions on what to do before the procedure by their surgeon’s office. Fasting before surgery is required. The patient may be asked not to take certain medications, vitamins, and herbal supplements before the procedure.

Testing such as an EKG (a test that monitors the electrical activity in your heart), chest X-ray, CT scan, PET scan (positron emission tomography), PFT (pulmonary function test), and blood tests may be ordered before the procedure.

Before the procedure, ask about the weekend/ holiday contact information for your doctor’s office.

What to expect. The VATS procedure is done in a hospital or an outpatient surgical center under anesthesia by specially trained surgeons or pulmonologists. The physician will either make several small incisions or a single incision. He/she will then insert the thoracoscope device, which sends pictures of the inside of the chest to a video monitor. The video images will be used to guide the procedure. The surgeon will insert some small tubes into the chest once the procedure is completed. These chest tubes allow for the drainage of any fluid or air. Any tissue samples will be sent to a lab for testing. The tissue may be tested for signs of infection or disease.

Benefits of VATS include:

• Smaller and fewer incisions than the traditional open surgery known as a thoracotomy.
• Shorter hospital stays.
• Less pain and scar tissue after the procedure
• Less need for a blood transfusion
• Lower chance of infections and other post-op problems

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Complementary medicine describes the types of treatments you may be given along with traditional Western medicine. In the past, many referred to Western medicine as traditional medicine, and Eastern medicine as Complimentary Medicine. Integrative medicine mixes traditional Western medicine with researched, evidence-based complementary therapies to achieve the best results for each patient.

The National Center for Complementary and Integrative Health divides complementary medicine into four categories: nutritional, psychological, physical, and combination.¹

Nutritional - how someone eats daily which may include special diets, dietary supplements, herbs, probiotics, and other therapies.

Psychological - may include meditation, music therapies, and relaxation therapies.

Physical - may include acupuncture, massage, and spinal manipulation.

Combination - may include multiple types of complementary medicine from the other three categories.

It is not recommended that those with lung conditions substitute integrative medicine for traditional medical care. These therapies should be combined with traditional medical care.²

Reiki, which began in Japan is a therapy based on a "life force energy" flowing within your body. When a person’s energy is low, they may get sick. The goal of Reiki is to restore this energy.

Ayurveda started in India and focuses on using treatments that involve purification panchakarma (a treatment that uses medicated oils and herbal remedies to detox the body via massage³), herbal remedies, special diets, yoga, massage, and meditation to treat certain conditions.

Naturopathy which began in Europe views disease as changes by which the body naturally will heal itself over time. The term "naturopathy" translates as "nature disease."

Homeopathy uses very naturally occurring substances to treat ailments. These practitioners believe that a very small amount of a substance that causes symptoms of a disease in healthy people can cure similar symptoms in sick people.⁴

Chiropractic medicine continues to increase in popularity in the U.S. Seeing a chiropractor may help to reduce pain and improve how your body functions. Techniques are used to work with your spine, joints, and skeletal system and help align your body.⁵

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This post was authored by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

The occurrence of nontuberculous mycobacteria (NTM) lung disease rises each year¹, yet many have never heard of this condition. NTM are common bacteria found in soil and water sources (both residential and naturally occurring). The most common type of NTM is called Mycobacterium avium complex, or MAC for short. These bacteria can be inhaled into the lungs and cause an infection. Most people can inhale the bacteria without getting an infection, but if you have a pre-existing lung condition like COPD or bronchiectasis, you may be more likely to develop an NTM lung disease.²

When someone is diagnosed with an NTM lung infection that requires treatment, they are typically treated with multiple antibiotics at the same time. NTM are hard to kill, so it is expected that those who are being treated with medications stay on them for 12 months after their sputum cultures are clear of the bacteria.³ While on treatment, sputum will be collected regularly as part of routine monitoring. If, after 6 months of initial treatment, sputum samples remain positive, the patient is considered to have refractory NTM lung disease. When this happens, health care teams may choose to change and/or add to the type of medication that a person is taking.⁴ Health care teams hope that this treatment change will kill the NTM and that the sputum culture will show less NTM in the lung.

If NTM lung disease is left untreated, further damage can occur to the lungs. This may lead to the person with NTM lung disease having worsening lung function and quality of life. In select cases of refractory NTM lung disease, doctors may choose to surgically remove sections of the lung that seem to be extremely damaged.⁵ This procedure, also known as lung resection, is only done by highly qualified, skilled surgeons.

Currently, research studies are being conducted on NTM, including refractory NTM lung disease. You can learn more about these studies by visiting the Ongoing/Actively Recruiting Studies page. Have you ever been diagnosed with refractory NTM lung disease? Tell us more about your experience below.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Rare Disease Day is a global awareness day to raise knowledge of rare diseases. It helps to promote a better quality of life for the 300 million people with a rare disease worldwide. More than 7,000 rare diseases exist, and 72 percent of those are genetic. A disease is considered “rare” when it affects fewer than 1 in 2,000 people. This year, Rare Disease Daywill be celebrated on February 28^th.¹

Rare Disease Day began in 2008. It is organized by EURORDIS and more than 65 national patient organizations.² EURORDIS (or Rare Diseases Europe) is a group of nonprofit partner organizations that works together to improve the lives of people living with rare diseases. EURORDIS is a patient-led, international organization. It includes those with rare diseases and their families, caregivers, healthcare professionals, researchers, policymakers, industry representatives, and the general public. Organizations from North America joined the effort in 2009, followed by the rest of the world in 2010. The long-term goal of Rare Disease Day is to make sure that everyone with a rare disease gets access to diagnosis, treatment, and care.

NTM lung disease is a rare disease. People with NTM are misdiagnosed frequently. Because the symptoms of NTM lung disease and COPD are similar, most people go through a maze of specialists before they are accurately diagnosed. As you might have noticed, many people in our daily lives have never heard of NTM lung disease. Sometimes, it can be hard to find a physician that feels confident treating it.

Rare Disease Day gives people throughout the world a chance to raise awareness of rare diseases. For many, this is the one day in the year when they feel a spotlight is shown on conditions that are not as common as others. Requests for action can be at local, national, and even international levels.

It can be difficult living with a rare disease and often lonely because many people have never heard of your condition. It can be difficult at times to find support and education on how to manage your condition effectively. Also, people with rare, invisible disorders may be frequently misunderstood by others. Increased awareness may allow more people to better understand these conditions, leading to greater support for individuals with rare, invisible diseases.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Alpha-1 antitrypsin deficiency disease (also termed alpha-1) is a rare disorder that is often mentioned at patient conferences for bronchiectasis/nontuberculous mycobacteria lung disease (NTM) patients. However, this condition is not understood by many patients. An estimated 100,000 people are affected by alpha-1 within the United States. Alpha-1 can be linked to bronchiectasis.¹ It is important, therefore, to occasionally consider ruling out this condition when a person notes ongoing respiratory issues.

Bronchiectasis results in swelling of the airways and an increased chance to develop repeat or chronic respiratory infections.² The most common diseases associated with bronchiectasis are COPD, acute bronchitis, post-inflammatory fibrosis, and genetic disorders including alpha-1.³

Alpha-1 occurs when there is a lack of a protein in the blood known as alpha-1 antitrypsin (AAT). This protein is produced by the liver. In this condition, the liver cannot secrete this protein at the normal rate, and it collects in the liver resulting in less AAT in the blood. An increase in this protein in the liver can cause liver disease, and a decrease in this protein in the blood can lead to lung disease. The function of AAT in the blood is to protect the lungs from damage to the airways and air sacs caused by infection and other damaging irritants such as cigarette smoke, respectively.⁴

How alpha-1 impacts the lungs:

• Breathlessness
• Wheezing
• Cough (with or without sputum production)
• Frequent flare-ups (exacerbations)

Alpha-1 affects the liver as well. Frequent symptoms include the skin having a yellowish appearance (jaundice), the belly appearing swollen, and vomiting or passing of blood.⁴

Who should be tested?

• All patients diagnosed with chronic bronchitis, bronchiectasis, NTM, COPD, or emphysema
• Individuals with unexplained liver disease
• Individuals with a family history of COPD or liver disease
• People with granulomatosis with polyangiitis (GPA). GPA is a disorder that causes inflammation of the blood vessels in the nose, sinuses, throat, lungs, and kidneys.⁶
• Necrotizing panniculitis (inflammation in fat beneath the skin) that causes the skin to harden and form painful red lumps and patches.⁶

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Treatment for NTM lung disease can be overwhelming for patients, their families, and caregivers. Good communication across the health care team is important for those needing NTM treatment.

Management and treatment of NTM lung infections usually include multiple specialists to help deliver the best quality of care. The health care teams for those who have NTM lung disease may include pulmonologists (lung doctors), infectious disease specialists (someone who specializes in the treatment of infections), primary care physicians, nurses, respiratory therapists, pharmacists, surgeons, dietitians/nutritionists, and mental health care providers.

Before someone with NTM lung disease starts a treatment plan involving medication, they should talk to their health care teams about the following topics.

• How long they will be taking the medicines
• How will they know if the medicines are working
• Follow-up appointments
• Any possible side effects
• How will questions and side effects be handled if they arise

Talking about what to expect in the months ahead may help people taking medicines for NTM lung disease stay on their treatment plan. Worry and anxiety often related to taking medicines for a long period may decrease once a person understands the treatment plan ahead.

The goals of the treatment of NTM lung disease vary between patients but may include improvement in symptoms, stabilization of abnormal CT scan or chest x-ray results, and/or improvement in sputum culture results. In 2020, experts in the field of NTM lung disease developed guidelines for treating the most common NTM infections, including Mycobacterium Avium Complex (also known as MAC) and Mycobacterium abscessus. Instead of treating the NTM with one medicine, experts recommend taking 3-4 antibiotics for the treatment of NTMLD.¹ Based on the type of NTM someone has (e.g. MAC lung disease) their health care provider may recommend the following medicines clarithromycin or azithromycin, rifampin or rifabutin and ethambutol, and possibly streptomycin or amikacin. The treatment guidelines advise that those taking these medicines should stay on them for 12 months after sputum cultures are clear of NTM germs being treated.

Your health care team may suggest that you begin taking the medicines slowly. This may mean that you start the first medicine, then begin the second and third medications one week later. This staggered start will often help those taking the medicines decide whether they are tolerating the treatment.²

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Getting a diagnosis of bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming, to say the very least. It is important to understand the path ahead for you as an individual with a rare disease.

Communication with your health care provider

Communicating with your doctor about the details of your treatment plan is the key to the best care possible.

Before Your Appointment, prepare a list of questions you have for your doctor. Plan for a family member or a friend to attend the visit with you, if possible

During Your Appointment —Inform your doctor of whether you understand the course of treatment that he/she is suggesting. Be open with your major concerns. Understanding and sticking to your treatment plan can help you manage your condition and may result in better outcomes.

Questions to Ask Your Doctor:

• What medicines will I be taking and for how long?
• What side effects are common for each of these medicines?
• What over-the-counter medicines may help me manage symptoms as well?
• What treatment options are available to me (including airway-clearance devices that may help to break up the sputum and nebulizers that deliver inhaled medications that may assist with symptoms)?
• What precautions should I take? What infection-control practices? Home modifications? Lifestyle changes?
• How often should I schedule office visits and do repeat testing?
• What are some side effects that I should report immediately?
• How can I access my medical record? Ask for and keep copies of all your lab work and test results.

Medications and Treatment

Take all medicines as prescribed by your doctor. Ask your pharmacist if you have any specific questions about each medicine. Keep an updated list of the medicines that you and keep it with you at all times

Begin a routine airway clearance practice. Get assistance from your doctor or a respiratory therapist to find the best techniques and/or devices that will help to clear mucus and prevent it from pooling in the airways. Report flare-ups, changes in sputum production, increased shortness of breath, fatigue, fevers, and night sweats to your doctor.

Nutrition and exercise

Proper nutrition and maintaining your weight are necessary for overall wellness. Eating a healthy diet with nutritious foods will help you to feel your best and have the energy you need. Exercise when you feel up to it. A small amount of exercise is better than no exercise. Movement is so much better for our lungs, bodies, and minds than staying sedentary.

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This blog post was authored by Emily Henkle, PhD, MPH, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Hello NTM community!

The MAC2v3 clinical trial led by Dr. Kevin Winthrop and team at Oregon Health & Science University is beginning its 5^th year. This study is important to the NTM lung disease community as it is designed to test whether two drugs (azithromycin and ethambutol) are as helpful in treating MAC (a common type of NTM) as the “big three” (azithromycin, ethambutol, and rifampin) in producing a negative sputum culture. The researchers are also studying whether two drugs are easier to tolerate than three.

As of today, the study has enrolled over 300 participants, but are wishing to increase that amount to reach a target of 500. Therefore, there are plenty of openings for new participants. Now that most people with NTM lung disease are feeling more confident following the pandemic and returning to doctor’s appointments in person, we are hoping to quickly recruit more patients with MAC interested in participating.

We are pleased to share that our funder, the Patient-Centered Outcomes Research Institute or PCORI has extended the project for two more years. However, the MAC2v3 study does not have any analysis planned until all the data is in, so we need to finish enrollment before we can look at the results.

We have gained some great insight on how symptoms of MAC change in the first 6 months as we have continued to enroll new participants in the study. This information was presented at the American Thoracic Society (ATS) annual meeting in May 2021 and May 2022. We observed significant improvements in overall self-reported Respiratory Symptoms and Health Perception scores. Patients reported a wide range of symptoms at study start. As expected, the most common self-reported treatment side effects were GI-related, occurring in about half of study participants. In addition, we continue to meet with our study advisory committee and data monitoring committee regularly. These committees provide guidance and ensure that all aspects of the study remain safe.

As we began this study in the midst of the COVID pandemic, we adjusted how those interested in the study could be referred. Patients can be referred virtually for this study without the need to travel to OHSU or local sites. There is no additional requirement other than reaching out to study coordinators. Those interested candidates as well as those accepted can remain with their preferred (treating) physician while getting the benefit of guidance from NTM experts.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

The holidays are quickly approaching. We have gotten through an extremely challenging pandemic. However, many people with lung conditions are also worried about RSV Respiratory syncytial virus (RSV) and the flu. Are you prepared to enjoy the holidays despite concerns about how your lung disease may impact your time with family and friends?

Below are a few tips that I have learned over the years on how best to enjoy the holiday season when you have bronchiectasis and/or nontuberculous mycobacteria (NTM) lung disease.

Ask about the health of guests

During the upcoming holiday season, we must protect ourselves. It is important to inquire about the health status of all who will be attending a holiday get-together the day before and/or the day of the event. If a child or adult has mild respiratory symptoms, it's OK to be assertive and say "no." It is best to reschedule another time to get together with these individuals. Put yourself first and make the right decision; it is being smart, not selfish. Many people may not think about or realize that their mild symptoms can lead to major symptoms in a person with a lung condition.

Also, realize that people can be carriers and not know if they are sick. It is up to us whether or not to take risks in all situations. It is important to continue practicing the basic infection-control measures (e.g., hand washing, mask-wearing) reviewed throughout the pandemic. These viruses will be around for quite some time. People need people. Our mental health is so important for our physical health.

Think about food and drink alternatives

After doing your family/friend assessment, enjoy the day. It is great to be around family, friends, and little children who light up your day. Regarding holiday dining, check out possible food interactions if you are on antibiotics. For example, you may need to avoid dairy foods within a few hours of taking antibiotics. Think about drink preparation in advance. I drank O'Doul's nonalcoholic beer and alcohol-free Fres wine while I was on the "big three" antibiotics. I would have preferred to indulge in a good glass of vino during the holidays, but the alcohol/drug interactions were too risky.

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