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 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.