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Believing that I would get to the other side of the rainbow 🌈. Believing that I would eventually get the treatment that I needed and deserved. Navigating the health care system was much more challenging to deal with in the past than it is now.

Increased public awareness, education and the creation of the CCN has opened up doors to more patients throughout the country. We are here to support you on your journey, whether you are newly diagnosed or been dealing with BNTM for awhile. 

Christina,

Thank you!!! I have a list of my favorite things.😍😍😍🎉🎉🎉

🚀 Mission Log

If you could send one message back to yourself on the day you were diagnosed, what would it be?

✨ "Ask more questions."
✨ "Find a bronchiectasis specialist."
✨ "Stick with airway clearance—it really does help."
✨ "You're going to find people who understand."

Share your message below. Someone reading it today may need to hear exactly what you have to say. 💙

What a great way to celebrate such a caring member of our community! Happy Birthday, Katie. You deserve all of your favorite things! 

GaleC, Hello! I am so glad you were able to get to communicate with the doctor on call, got the initial testing done. I hope you can get some rest tonight and all goes okay at your doctors appointment today. Please keep us posted. 

I was able to talk to the on call Dr. She sent me to the ER and they ran lots of tests and consulted with an ophthalmologist. She wants to see me tomorrow to do her own checking. Thank you! 

So glad that the air is clearing up and you were able to get out for a hike; it was a challenging few days. Beautiful day here! 😊

Today AQI 47--Smoke all gone🤷🏻‍♂️--Just back from a hike👍

GaleC,

Hello! I am sorry that you are dealing with eye issues, over the weekend. I would strongly recommend to stop the drug today and await communication with your doctor.

I don’t know the severity of your eye issue based on your message. You can notify your doctor over the weekend if blurred vision, eye pain, red-green color blindness, or vision changes occurs during treatment . Your doctor may want you to have your eyes checked by an ophthalmologist sooner than expected .  Also, make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not able to see well. There are other options, you do not have to stay on a drug that is causing such issues. Your healthcare providers  will discuss the details with you. 

I’m having issues 2 weeks in on the Ethambutrol with my eye. I have a call into my pulmonologist and eye Dr. ( it’s a weekend). I’m freaked out but assume there are alternatives. Anyone else need to go off this medication? I’m not sure where to look on this site. Thank you!

Lucinda,

Thank you so much for the birthday wishes! Looking forward to a better year ahead! 😍

Das23,

I hope it is better tomorrow; meteorologists are predicting that it will clear up a bit after tonight’s storms. Keeping my fingers crossed- we need to get out and about. 

AQI 168 at 9:30 pm here in Beantown. Supposed to be ok tomorrow--we'll see

Happy Birthday, Katie!! Wishing you many more🎈🎂🎉

Have you been exposed to the wildfire smoke over the past week? Below is an article on 10 tips to assist you with detoxifying your lungs. I would exclude the tip on using a humidifier, not advised for BNTM patients. Do you have any other suggestions? https://www.respiratorytherapyzone.com/detox-lungs-wildfire-smoke/

Thank you , Das23.

We are so glad that you are a part of our BNTM community.  Have a great day!

Brandon,

Thank you so much for your beautiful and heartfelt post. I really do enjoy helping and supporting our patients whenever I can, and it means so much to me to know you see that.  I am so grateful to work with such wonderful people and a team that cares so much. Regards to your family.  Have a great weekend. :)

Happy Birthday Katie. Thank you for all you do

Below is information on the BNTM Care Center Network: https://www.bronchandntm.org/For-Patients/Find-Care-and-Support/Care-Center-Network/General-Information

Emex 56,

Hello! I am sorry to read about your current situation, dealing with Hemoptysis and respiratory infections.  Are you being evaluated by a specialist who truly understands bronchiectasis and NTM infections?  What type of sputum culture do they do? There are different types of sputum tests. Do you have to wait weeks for the results? 

You may need to take different antibiotics to help clear your infection.  Clearing your infection may lead to less coughing up blood.  Where do you currently reside? We have BNTM Care Centers throughout many parts of the USA.  These centers offer comprehensive care and expertise for BNTM patients.

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Hi everyone, I'm Emex56, please this haemoptysis affect me anytime I come out in the cold weather or air-conditioned office, mall or room or just 1minute inhalation of cool breezy wind air or even on mild to moderate exertion like climbing staircase normal pace or little faster; all these will instantly induce haemoptysis; 

If I rush and start nebulization with albuterol solutions and sodium chloride solutions; I will start getting relief and gradually the haemoptysis will start declining and sputum changing from bloody to less bloody. 

Honestly the situation make to be afraid of coming out to attend events, or to go anywhere. I stay indoors to avoid haemoptysis. Please I need advice on what to do to neutralize these haemoptysis triggers permanently and be able to live slightly good quality of life before I die. Thank you all as I wait for responses. 

I also have phlegm coughing out 24/7  color light greenish with bad offensive odour.

My health care provider did laboratory test sputum culture etc and antibiotics prescribed but once I start taking the antibiotics the odour declines, sputum frequency reduces I feel better but once I completed the antibiotics,  one week time the whole symptoms are back; bad odour,  plenty voluminous phlegm, etc 

Please, what will I do? Solutions please my friends. Ideas please 

Alyssa,

So glad that you can get 30 minutes on your walking pad as frequently as possible.  Can you please post a picture of your walking pad?

I am sure that many members have not seen walking pads before.  Walking pads are portable, easy to store away, unlike a treadmill. Thank you, Katie 

Care Centers offer the specific lab work that can identify possible causes of bronchiectasis. It is important to identify the root cause of a disease when possible, before a treatment plan starts.

We must continually remind ourselves that "This too shall pass".  We will get through this air quality challenge and will be able to enjoy some nicer summer days. We must keep ourselves busy with a new hobby, some good diversional activities while mostly indoors at this time..  

Tim,

Hello! Sorry to read that Michigan is already in the Red Zone.  I am in the Orange Zone and will soon be in the Red Zone in the Northeast.  The EPA developed the AQI (Air Quality Index) to provide information on the health effects of the most common air pollutants and how to avoid them. Below is a link to review more information about the Air Quality Index: AQI Basics | AirNow.gov 

Please stay safe and take necessary precautions.  Let us know if you have any questions.

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for the advancement of care. Suggested questions to ask before beginning a research trial:

Participation

• What is the purpose of the trial?

• How will this treatment be different from what is currently being used?

• How long will I be in the trial?

• How many visits will I need to make to the hospital or clinic?

• What kinds of tests and treatments are involved?

• How will the doctor know if the treatment is working?

• Who will oversee my care?

• Who can answer questions I have during and after the trial?

Risk and benefits

• What are the possible side effects or risks of the new treatment?

• What are the possible benefits?

• How do the possible risks and benefits of this trial compare to those of the current treatment?

Rights and costs

• How will my health information be kept private?

• If I decide to leave the trial, what other options will I have?

• Who can help answer questions from my insurance company?

• Are there any out-of-pocket costs if I take part in the trial?

• Are there payments for participating or to cover travel?

Please let us know if you have any questions.  I will continue to post more information on clinical trials throughout the week. Please stay tuned. :)

Thanks for sharing that, Tim!

The heat is no joke, especially when you're dealing with a lung condition. Even people without breathing issues can feel wiped out, so it's easy to see how much harder it can be for those of us who already have to work a little harder for each breath.

If you have to be outside, try to get things done early before the day really heats up. Take your time, pace yourself, and don't feel like you have to push through it. It'll still be there later.

And with everything else you're already juggling—airway clearance, medications, and just day-to-day life—I hope you're able to stay cool, stay hydrated, and make it through this stretch of hot weather with as little trouble as possible. Easy breathing, my friend.

Hello Gretchen,

I am glad you reached out with this important question. I am curious about how much blood did you cough up with your four episodes? 

Bronchial artery embolization has become mainstay therapy for many patients with both acute massive hemoptysis and chronic hemoptysis from a variety of causes. While this procedure can be lifesaving, recurrence and complications can occur.  

I don’t know anyone who has been through this procedure. Have you asked your doctor about the number/ volume of cases UNC does each year and their success rates? 

Hi! I'm 82. Have had bronchiectasis for probably 40 years. Hemoptysis 4 times: 2009, 2017, 2026 (2 x's). Am considering – seriously – BAE (Broncial Artery Embolization) and would LOVE to hear from anyone with experience with this procedure. I had a consult today with a UNC Interventional Radiologist who would perform the BAE. 

Boil water for at least 3 minutes after it starts to boil, then cool it for at least 10 minutes to room temperature before placing the water into the plastic nasal wash system.  I hope this helps you. Please keep us posted. 

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer, and more effective treatments. There are four phases carefully designed to study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, and treatments. Below is a summary of what occurs at each phase of a clinical trial.

• Phase I – Explores whether a treatment is safe in a small group.

• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and assess how well the treatment works at different doses.

• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.

• Phase IV – Monitors long-term safety, interactions with other medications, and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks, and benefits. Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

Have you participated in a clinical trial? Would you like to share your experience with the community?

Prima,

Hello! I agree with Christina that a neti pot / nasal wash can assist you in clearing your nasal passages. You can purchase it at local drugstores or online. A popular brand is the Neil Med nasal wash. It is important to use clean water, water that has been boiled for over 3 minutes, then cooled prior to placing it in the net pot with a salt solution. 

If you use a neti pot, make sure you do not use tap water. Use either distilled water or water that has been boiled and then cooled. I am hoping Katie can chime in on what type of water she recommends as best.

For a vest system to be covered by most insurance plans, there usually needs to be documentation that you have tried other airway clearance methods for about six months first. If you do not already have a flutter device or an Aerobika, it may be helpful to start with one of those and work with your health care team to document how you do with them.

It is usually best to do airway clearance first thing in the morning. When we lie down and breathe more shallowly during sleep, parts of the lungs can temporarily collapse, a process called atelectasis. Because of this, and because bronchiectasis causes the airways to become widened and misshapen, it can be harder to move mucus out. Doing airway clearance in the morning can help you remove mucus more effectively, which may help you avoid future infections, shortness of breath, coughing, and the feeling of having a lot of mucus sitting in your chest.

I would also recommend making sure you have a good airway clearance routine in place. Once you have a routine, it is usually best to wait about two hours after eating to perform your therapy, or to do it before meals, to help reduce the chance of acid reflux.

Do you currently work with a bronchiectasis specialist? If you are having frequent pneumonias, I hope your team is sending sputum samples to the lab so they know exactly which bacteria are present and can target them with the right antibiotics, and also to check for any NTM infection.

I really enjoy walking on my walking pad. I try and do this for 30 minutes a day. 

Hi Pam.

I hope that the fires have decreased and air quality has improved. I personally think that you can't go wrong with adding an air purifier when air quality seems to worsen. This goes for folks living in areas where pollen and other triggers are prevalent. Most of the year, you can accomplish improving air quality in your home by having the filters changed frequently in your central AC unit and using good-quality air filters. However, the separate air purifier could be a good thing from time to time. I don't have a recommendation for a specific brand, but read the reviews, focusing on effectiveness, how loud some can be, and ease of changing filter in the unit/maintaining it.

Hi SusuG.

Great question! We definitely want you to feel your best with grand kids and an active lifestyle!

I think Katie is on the right track of suggesting that you avoid foods that may cause increased acid and elevating the head of you bed a bit. I would also recommend (in addition to taking an acid reducer - very common prescription with this diagnosis) that you avoid eating late in the evening. Aim for early dinner times and avoid acidic beverages when watching TV/movies or lounging at night. For instance, I LOVE sparkling water but between the fizz and the acidity of most sparkling water, I found that I had more acid at night. You would be surprised what can flare acid up!

If you try any of these tips and they work for you, please report back. We want our community to share and support, and often, the best recommendations come from our community!

Bronchiectasis can not be spread from person to person. However, there can be a genetic component that affects your lungs that can lead to bronchiectasis within your family. Have your mom talk to her pulmonologist about testing that may be available. Is she seeing a doctor at one of our Care Center Network sites?

Hi Prima.

With your bronchiectasis diagnosis, airway clearance will be key to help you avoid flare-ups. If you have a lot of mucus production associated with your sinuses, inevitably you are going to have drainage and that drainage can go down into your lungs. I recommend you using a neti pot to help clear sinuses. Are you seeing an ENT or allergist for management of your sinuses?

In addition, you may want to think about escalating your airway clearance routine to include a type of vest to when mucus production is higher. I'll let some others chime in with ideas as well.

Prima,

Hello! Have you discussed this with your healthcare provider, an Ear, nose and throat specialist? It sounds as if you may have a sinus infection, and be in need of antibiotics? 

My bronchiectasis results in constant coughing and spitting up of phlegm 24/7.   I feel like I have a continuous head cold.   Do I still need to do airway clearance since the problem seems to be in my sinuses?   I spit up a lot of mucus/phlegm all day long so I don’t want to produce even more by doing airway clearance.   Please  enlighten me….

Bronchiectasis can be associated with genetic factors, particularly through hereditary conditions that impair mucus clearance or immune function. While bronchiectasis itself is not inherited as a single-gene disorder, various genetic mutations and autoimmune diseases can contribute to its development.

Genetic testing can assist your health care provider to determine the right treatment plan. Please discuss this further with your healthcare provider. 

Larry,

This maybe a genetic issue for your mom and her sister.  Bronchiectasis is not communicable. Hemopytisis is a symptom in some Bronchiectasis patients, not the majority. Does your mom and your aunt see the same pulmonologist? It would be great for the pulmonologist to discuss the details with both of them. Below is a booklet on Bronchiectasis for your review. https://resources.bronchandntm.org/public/document-library/25/english/20260421130948.pdf

Larry,

Hello! Bronchiectasis is not a communicable, contagious disease in itself . Catching a germ , flu, bacterial infection from a person who has Bronchiectasis is a possibility. Researchers are continuing to research the genetic component since there has been a link amongst family members getting diagnosed with Bronchiectasis. 

Brandon,

Great post!!! A sense of humor certainly keeps in going on such days. I have a ton of stories, laughable moments from over the years. 
On the funny side- I write a poem with a fellow NTMer while  awaiting to see our pulmonologist in his office many years ago. It included actors such as Dr.Mucus Welby, Md Peggy Flem and a lot  of other uplifting mucus characters. It was quite comical. We were both sick and stressed at the time and in need of a good laugh. I cannot find the poem at this time.

On the not so funny but funny in its own way - I drove up to the pharmacy window when I first started Tobramycin, this drug was new to me and I had no idea how costly it was. The pharmacy tech asked for my credit card, informing me that it was $4800.00 at the time. I had to put the RX back and get home and do some research, call my insurance company. I eventually solved the issue and was able to get the drug at a reduced cost. It was just one of those days.

We gave good days, not so good days. Supporting one another assists one another to keep marching forward.