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Even During a Pandemic, Kansas City Pulmonary Fibrosis Foundation is Finding a Way to Empower Patients

October 2, 2020

Even through the COVID-19 pandemic and the challenges it brings, the Kansas City Foundation for Pulmonary Fibrosis (KCFPF) has found new ways to continue their mission to improve the lives of local pulmonary fibrosis patients.

According to the Mayo Clinic, “Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred. This thickened, stiff tissue makes it more difficult for your lungs to work properly. As pulmonary fibrosis worsens, you become progressively more short of breath.”1

In 2018, Dr. Mark Hamblin, pulmonologist at the University of Kansas Medical Center, founded the KCFPF after noticing that there was limited support for early detection and limited opportunities for education around pulmonary fibrosis. The non-profit typically focuses on raising awareness of the disease in their community, providing sponsorship to patients and caregivers to attend educational events and providing grants for patient needs. When COVID-19 began to impact daily life, the organization had to think outside of the box.

KCFPF Board Member and pulmonary fibrosis patient, Dale Brommerich, who is also actively involved with local pulmonary fibrosis support groups that the foundation supports, said that because of COVID-19, pulmonary fibrosis patients have had to adapt. “We have had to change our support groups from in-person to Zoom meetings…when the pandemic started, the hospital systems were overly cautious for the safety of patients and asked pulmonary fibrosis patients to only come in for appointments if there were emergencies.”

Without regular office visits during the start of the pandemic, Dr. Hamblin found that patients using pulse oximeters on their own to monitor their disease could sometimes tell when things were changing and even help determine if they were having an emergency that required them to come in to the hospital, “…one of the big things that we worry about with pulmonary fibrosis is what we call an acute exacerbation, which is a rapid progression over two to five weeks,” he continued, “I’ve had patients using a pulse oximeter at home and notice their oxygen levels dropping, needing up to 6, 8 or 10 liters of oxygen, and that’s probably because they have a potentially life threatening event.”

A KCFPF patient using a personal use pulse oximeter provided by Nonin

Dr. Hamblin also said that home pulse oximetry monitoring has helped him determine when patients may not need to come in to his office, “I have some patients that we see in August every year because the humidity makes it harder to breath, but they’re completely fine, it’s just the weather…I try to educate those patients to get pulse oximeters so they can get some reassurance and not incur that additional expense.”

From a patient perspective, Brommerich echoed those sentiments, “If you understand the basics of pulse oximetry levels and have an oximeter, it can lower your stress level knowing you are OK and not needing to call your physician…Even more so under the pandemic, because a common conversation in our support group Zoom meetings is a fear of going into the office or hospital and contracting COVID-19.”

Through the pandemic the KCFPF has continued to find ways to continue their mission. In lieu of sending people to in-person educational events, the foundation has purchased hundreds of pulse oximeters for patients in need so they can better manage their pulmonary fibrosis. In addition, they have continued raising awareness of pulmonary fibrosis, working with the Kansas City mayor to have September proclaimed pulmonary fibrosis awareness month.

For more information on the KCFPF, visit https://www.kcpulmonaryfibrosis.org/.

1 https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690