Putting a Face to the Disease: Meet Pulmonary Fibrosis Foundation Ambassador Melissa King
Every September, the pulmonary fibrosis (PF) community comes together for PF Awareness Month, sponsored by the Pulmonary Fibrosis Foundation (PFF). Melissa King, a PFF Ambassador from Buffalo, NY, has participated in PF Awareness Month since 2017. Her reason for participating is inherently personal. When first diagnosed with PF, she thought, “Thank goodness it’s not cancer.” But after researching PF, Melissa was shocked to discover there was something worse than lung cancer. A positive person by nature, Melissa was determined to do whatever she could to stay healthy, pushing to get a prescription for pulmonary rehab, where she’s often the youngest patient in the room. She believes in the power of positive thinking and uses humor to get through the hard parts. As a PFF Ambassador, she wants to spread the word about PF and support those just finding out they have the disease.
Here’s what Melissa had to say about the impact of diagnosis, managing therapy, available resources and advice for others living with PF.
How did you feel when you were diagnosed with PF?
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Melissa and daughter, Adriana, attending Pulmonary Fibrosis Awareness Month special illumination of Niagara Falls (#BLUEUp4PF) September 9, 2022 |
To understand my feelings about my PF diagnosis, I want you to first know that I am an extremely optimistic person – like beyond glass half-full. I like to say that the glass is completely full, it’s just that half of it is liquid and the other half is air. I look at problems as opportunities, for the most part. In that frame of mind, PF was going to be a huge opportunity (and that has proven to be true tenfold, at least).
In the beginning, though, diagnosis was incredibly scary. Like most people, I had never heard of this terminal disease. The internet misinformation network fed the worst fears with stories of a horrendous, drowning death in 2-5 years. Despite having a phenomenal support system of family and friends around me, I felt lonely. We were all going to fight together, but I was also mourning the me I thought I was and would be. My kids were in high school, and I was jumping ahead to thinking of missing their future possible weddings and children.
Luckily, the phases of my grief were brief. After starting pulmonary rehabilitation, I realized it was not necessary to mourn any parts of me. (Also, my youngest just graduated from college and my oldest just bought a house and got engaged!!)
What impact does PF have on your daily life?
PF has tremendous effect on my daily life. For the past 8 years, I have needed supplemental oxygen continuously – every moment, every activity. Whether it is compressed oxygen tanks or oxygen concentration machines, I must be connected to the oxygen 24/7 via plastic tubing known as a cannula. It is my physical leash. The self-reflection that comes with a terminal diagnosis, however, created a psychologically life altering “unleashing.” While every human being has a limited number of days, being consistently confronted with that truth shifted my focus toward identifying and improving the fragile but significant moments of life, both big and small. Daily, I may have to focus on medications and fighting PF, but I also get to live my best life according to my true reorganized priorities.
What should pharmacy staff know when talking to PF patients?
Obviously, kindness and patience are two of the best qualities pharmacy team members can share with PF patients. Many patients may have not yet found the right doctor fit and may feel uninformed about the disease and medications. Helping patients find support groups and evidence-based information can be extremely valuable. Being knowledgeable about medication costs, out-of-pocket expenses, and available financial help would also be helpful to patients.
Tell us about the PFF Ambassador program.
The PFF Ambassador program encourages and empowers patients, caregivers, and health care professionals to become spokespeople for the PF community on behalf of the PFF. Ambassadors participate in comprehensive program and public speaking training, and speak at PFF Care Center Network sites, support group meetings, fundraisers, educational events, and many other settings. They also represent the PFF and share a message of hope and inspiration to those affected by PF.
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How did you become a PFF Ambassador?
I became a PFF Ambassador in 2017 after responding to an open call for volunteers and filling out an online application. I was thrilled when a staffer from the PFF called to interview me about my interest. In April 2018, 18 of us met in Chicago for our initial training session and became like family. Five members of that group have passed since our first meeting, but more are added each year. This year, I have also had the pleasure of mentoring a new Ambassador and sharing the ins and outs of this amazing position. Sharing my story as a PFF Ambassador has given me deep satisfaction and a small measure of control in what is an otherwise uncontrollable existence.
What are some additional resources that PFF provides?
The PFF’s mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers.
In addition to the PFF Ambassador Program, other signature programs include the PFF Care Center Network, PFF Registry, PFF Help Center, the biennial PFF Summit. The PFF also offers an international network of support groups and online communities, as well as comprehensive disease education materials.
What advice would you offer someone newly diagnosed with PF?
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Melissa King and Truffles walking for the 2021 PFF National Walk Day in LaSalle Waterfront Park, Niagara Falls, NY. |
First, and most important, your life is NOT OVER! A fulfilling, even happy life is still totally possible. You CAN live with PF, not just lay down and die from it. Ok, now that the cliches are out of the way, I would tell anyone newly diagnosed with PF to research medically credible sources (ever if you are afraid of what you might find.) Arming yourself with information is the first way that you can get some control back.
Secondly, focus on what you can do, not on what you can’t do. Push yourself to live a robust rewarding life despite your PF. Most patients deal with some level of depression and anxiety, so reach out to appropriate mental health professionals, if necessary.
New patients should know you can be an outstanding self-advocate. It is helpful to identify one or more people who can also advocate for you through the entire process, from doctors’ appointments to hospitalizations to everything in between. Speaking of doctors, do not be afraid to seek a second opinion, or to switch doctors if yours doesn’t make you comfortable. You should be able to ask lots of questions and get information and advice that you can follow.
Last but not least, do not let yourself become isolated. Expand your support network beyond your family and friends to other PF patients. Empathy feels worlds better than sympathy. Use the internet or find a face-to-face group of fellow patients – you will not regret it!
Resources:
Understanding Pulmonary Fibrosis – AllianceRx Walgreens Pharmacy patient condition guide
Qué es la fibrosis pulmonar - AllianceRx Walgreens Pharmacy patient condition guide en espanol
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