Living with Bronchiectasis: The Patient Perspective

Posted on January 27, 2021   |   

This article was written by Bret Denning, JD and Christina Hunt, BS, RRT-NPS


Brian Simpson

Brian Simpson is a registered respiratory therapist (RRT) who has lived with severe chronic asthma for more than 30 years. He has worked in pulmonary rehabilitation and as a COPD Navigator and case manager. When his bronchiectasis led to a rapid deterioration in lung function, Brian could no longer work with patients. He began working as a CDI (clinical documentation improvement specialist), reviewing inpatient accounts. Even with severe lung disease, Brian has completed 18 full marathons, more than 30 half marathons, and a 50K mountain trail race.

Thanks for talking with us today Brian. Can you tell us when you first started noticing signs of your bronchiectasis?

I first started noticing symptoms of bronchiectasis a little over four years ago. I had a rapid and severe decrease in lung function after finishing two marathons within a two-week period. Prior to that, I was running at least five to eight miles every day. My lung function dropped from just under 30% to 15% and I noticed muscle fatigue with any activity. Even coughing was a struggle.

What tests did the doctors do to confirm your diagnosis?

My physician ordered a CT scan of my chest and pulmonary function tests as part of a pre-lung transplant assessment. When my pulmonologist reviewed the results with the radiologist, they made the diagnosis of bronchiectasis.

I’m sure it was quite a shock to hear that. How did you initially react to the diagnosis?

I remember feeling somewhat overwhelmed being diagnosed with bronchiectasis. I’m a non-smoker who has suffered from severe chronic asthma my entire life. Over time, that developed into stage 4 COPD, and now I was adding bronchiectasis to the list of diagnoses.

Now that you are living with bronchiectasis, what are you doing to manage your condition? Are there changes you have made to your daily routine?

I continue to use my original asthma medications, and I have also begun using an inflatable, vibrating vest. I also try to exercise as often as I can. The treadmill works best for me and I try to use it four to five times a week. Nutrition is also important, and I try to keep a good balance between proteins and carbohydrates. Finally, I have realized how important it is to sleep well. I use a non-invasive ventilator, which has greatly improved both my sleep time and quality.

We have all faced challenges during the COVID-19 pandemic. Has it changed or affected how you manage your bronchiectasis?

I don’t believe the pandemic has had much of an impact on the way I manage my bronchiectasis. I have worked remotely for the last 4 1/2 years and often keep my distance from others, avoiding crowds and large gatherings. I continue to have routine telehealth visits with both my pulmonologist and primary care physician. I prefer these visits as I seem to have the complete attention of my provider with little to no interruptions.

As a respiratory therapist, you have worked with others living with bronchiectasis and other chronic respiratory conditions. What has been the biggest challenge you have learned from the patient perspective?

As clinicians, we often underestimate the actual work involved with airway clearance. It isn’t as simple as “cough it out” and going on to the next therapy. It can take a lot of work to cough effectively and clear out the troublesome (and at times copious) secretions. The act of coughing can be utterly exhausting, especially after just completing two or three nebulizer treatments.

Let’s talk about the emotional side of things for a moment, how has your diagnosis affected you emotionally and how do you cope?

Bronchiectasis was not my first respiratory diagnosis. After years of very severe asthma and a component of fixed airway obstruction, it was much easier for me to accept this diagnosis. I have always been used to dealing with lung disease, so it was just one more facet of airway disease.

What steps are you taking to make sure you get the emotional support you need?

Shortly after the start of the pandemic, I joined a couple online support groups. I have found so many people that can truly understand what it is I am going through. Often, we just talk about everyday life and don’t mention our lungs at all, and other days the empathy and understanding you receive can be very comforting.

How do you talk to others about your bronchiectasis?

I try to increase bronchiectasis awareness, and let others know that it may not just be COPD when they have a persistent cough. I tell many people to ask if bronchiectasis may be part of their lung disease, even if their physician has not mentioned it previously. The best patient advocate is the patient.

Thank you, Brian; one last question. What advice would you give others who are newly diagnosed with bronchiectasis?

My advice to newly diagnosed patients is to be informed about proper airway clearance techniques and therapies. Talk with your physician about the importance of exercise and what other treatments may be available.


This post was sponsored by Hillrom, Inc.

18 Comments



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  • Thank you, Brian, for sharing your perspective. I especially like the comments made as an RT - how we often underestimate the work involved. It *is* hard work and we need to keep that in mind. We also need to communicate that understanding to our patients. That really resonated with me. Thanks again!
    Reply
  • Great article, Bret and Christina. And thank you, Brian, for sharing your patient perspective! Something that stood out to me was your experience with being part of a support group. "Often, we just talk about everyday life and don’t mention our lungs at all, and other days the empathy and understanding you receive can be very comforting." It reminds us that sometimes simply being around others who share the same concerns is enough. Talking about things other than lung disease helps remind us all that people with COPD and other chronic lung conditions are so much more than their disease!
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    • I really have found so much support from the interaction with others suffering from chronic lung disease. The group is three times a week and although i don't make every meeting, i do try my best.
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  • Thank you for sharing your story, Brian! Every time someone opens up about their day to day with a lung condition, the world is better off for it. Thank you for that.
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  • Thanks for sharing your story Brian. As a COPD patient myself you give me inspiration to do all that I can to stay as active as I can for myself and anyone I may be able to help along the way
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    • You're very welcome, thank you for taking the time to read and respond. I am happy for you, just remember....go one day, one step, one breath at a time.
      Reply
  • Thank you for sharing your journey with bronchiectasis with our community Brian. I have followed your story on social media for a while and I was in awe how you motivate, yet "keep it real" for others. I agree with you wholeheartedly about how difficult airway clearance can be for the bronchiectasis community. It's a work-in-progress everyday to manage the airway and still be able to enjoy life. Thanks again!
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    • It was absolutely my pleasure! I am still amazed how underutilized Bronchiectasis treatment, really is. It definitely a disease that you need to "take charge of" as much, and as soon as possible.
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  • Thank you so much for sharing your story! It was very inspiring to me. I am 51 and have had asthma all my life. It was mild as a kid but I started smoking at 14, so by the time I was 18, the asthma worsened. I still continued to smoke for 35 years. Now I struggle with getting a deep breath and find myself using a rescue inhaler several times a day. I was diagnosed with mild copd in October 2019 after a pft. But its doesnt feel mild at all. I quit smoking for 7 months a d them started back again for another 8 or 9 months. Now trying to stop again. My breathing troubles is frightening and depressing to me. Reading your story helped me alot. I'm sorry that you've had so many issues. I'm very impressed with your positive outlook. Thanks for sharing. :)
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  • Howdy Brian, I'm always impressed with what impaired lungs can do.
    If I read your story correctly, you competed in marathons with a lung function in the high twenties. Was that your FEV1 number ?

    I also want to ask questions regarding the marathons you ran.
    1. What was your best finishing time ?
    2. Is your pace a constant run or do you need to walk at some point ?
    3. Does race recovery take longer or the same amount of time as healthy runners ?
    Reply
    • Yes, my FEV-1 was between 28-31% while running. My marathon personal best was 4:51:44. I always used the run/walk method where I ran 4 minutes and walked 1 minute for the entire duration of all marathons and half-marathons.
      My recovery time was a little bit longer than for others depending on how my kings felt. Sometimes I didn’t run for a couple of weeks, and other times I would run 4-6 miles the day after the marathon, but at a much slower pace. Thanks for the questions. 😉
      Reply
  • Thank you Brian for sharing your experience and knowledge with us. I admire your perseverance and positive attitude toward life and living it. You certainly inspire me to exercise regularly and I have modified my diet. Hopefully with more research and studies things will get better for us people living with lung diseases.

    Reply
  • Hi Brian,
    Curious about your experience with the vibration vest. I started using one a couple weeks ago. I have a diagnosis of bronchiolitis obliterans (2018) and now bronchiectasis as well. Hoping airway clearance will help with my stamina. My last FEV1 was 28.
    I am wondering if you use POC as well.
    Looking forward to having more stamina in the springtime.


    Reply