Tales of 2 women, both named Melissa, on their IPF journeys

My name is Sam. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, and I hate this disease. My life was extended by a bilateral lung transplant in July 2021, thanks to an unknown donor who gave me a gift for which the value cannot be measured.

Pulmonary Fibrosis Awareness Month and Blood Cancer Awareness Month are in September. I want to share the stories of a couple of people on this journey for two reasons. First, their stories offer compelling reasons for increasing awareness of both diseases. Second, the women involved are at different points in their journey and have had significantly different experiences.

Melissa King

Melissa King from Buffalo, New York, was diagnosed with IPF in April 2014. She’d been stable for years, she says, and in February 2020, she began taking Ofev (nintedanib). That seemed to cause a small improvement, and she ultimately became stable again.

This year, however, on May 2, the trajectory of her disease changed. She was admitted to her local hospital because she was struggling to breathe, even with her oxygen concentrators providing her 16 to 18 liters per minute.

Her care team at the Cleveland Clinic was following her, and on the morning of May 3, the decision was made to transfer her there by ambulance. Less than 48 hours after being admitted for sudden-onset acute respiratory failure, her team moved her to the clinic’s cardiovascular intensive care unit. Melissa was now on extracorporeal membrane oxygenation (ECMO) watch. On May 8, she was placed on ECMO, and a tracheostomy was performed for a ventilator connection.

Today she’s been on ECMO for 119 days while she awaits compatible donor lungs for a transplant.

I interviewed King by Facebook Messenger on Aug. 28, and I asked her what she thought her future holds. This is what she told me:

“My donor pool is roughly 2% of the population, but I definitely didn’t come this far to only come this far. My future holds a ‘unicorn’ donor and a chance to pay forward all the goodwill given to me over the past four months. I am extremely lucky to have so many thinking of and praying for me. I hope to be able to help others get through this process, and to be able to walk my dogs with my husband, see my son get married, and hold my daughter’s future child in my arms.”

King has a high level of antibodies, which makes a donor match more difficult; that’s why only 2% of the population might be a match. Despite that, she continues to smile.

Melissa King, left, and Melissa Wheeler. (Courtesy of King and Wheeler)

Melissa Wheeler

Melissa Wheeler, known as Moe, from Round Rock, Texas, was diagnosed with IPF on Sept. 24, 2017, just two weeks after taking part in an Ironman competition. Wheeler’s IPF progression accelerated, necessitating a bilateral lung transplant on June 30, 2020. Like many post-transplant patients, she’s had minor setbacks, but she’s overcome them.

In August 2024, however, Wheeler’s red and white blood cell counts became erratic. After multiple visits to the emergency room for Neupogen (filgrastim) shots, she worked with her care team to be admitted to William P. Clements Jr. University Hospital in Dallas, commonly referred to as University of Texas Southwestern. It’s the same hospital where she’d received her lung transplant more than four years earlier.

Wheeler received platelets, blood transfusions, and a bone marrow biopsy there. Late afternoon on Aug. 20, a team of four doctors came into Wheeler’s room to deliver an unexpected diagnosis: myelodysplastic syndrome, a form of blood cancer that wasn’t in her playbook.

While they’re awaiting test results that could take two to three weeks, Wheeler began chemotherapy on Aug. 26.

During an interview with Wheeler by text message, I asked her to share her view of the future. Here’s what she told me:

“I live each day like it’s my last because I don’t know what tomorrow may bring.”

My connections with the Melissas

I met both women as Pulmonary Fibrosis Foundation Ambassadors.

King and I hit it off immediately because we’re both ardent fans of the Buffalo Bills football team. She also persuades authorities to turn the Niagara Falls blue and green for Pulmonary Fibrosis Awareness Month.

Wheeler is a huge Smokey Bear fan who’d spent time as a U.S. Forest Service firefighter, a job my son, Christopher, has also filled.

Both women have been shepherds to so many others on their journeys. I do not doubt that both are in it to win their battles. Sharing their stories to give you the courage to fight is how I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.