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Once struggling to breathe, avid runner in recovery from pulmonary fibrosis with help from VCU Health

After searching for answers throughout Virginia, the patient says VCU Health’s dedicated and attentive team of lung experts made all of the difference.

Two women standing in rain jackets with signs after a race. Elizabeth “Libby” Allen and her daughter are very active in the Richmond area running. (Contributed photo)

By Jayla Parker

Elizabeth “Libby” Allen planned to start her day off by going outside and running ten miles. Running long distances is one of the 57-year-old's favorite activities. Little did she know that her run on this October day in 2022 would begin the longest race yet.

Those ten miles soon became five with a tough walk back to her car. Allen struggled to catch her breath.

Realizing that her body was not functioning normally, Allen quickly traveled from her home in Deltaville, Virginia to multiple hospitals to find a diagnosis and treatment. Her medical team found blood clots as well as evidence of inflammation and fibrosis throughout her lungs.

“I kept telling myself, I've got to run again. It's my drug. I've got to run again. I want to run in the Richmond Marathon,” Allen said, as she described her motivation to find answers.

After hearing the possibilities of pneumonia, her doctor referred her to VCU Health for answers.

A full team to support a patient

Pulmonary fibrosis is a lung disease that causes scarring and inflammation to the lungs. Federal health experts estimate there are 250,000 people with pulmonary fibrosis throughout the United States.

“Scarring of the lungs is not much different than scarring in any other part of your body. It helps heal damage, but at the same time, it affects the ability of the body or the organ to function,” said Apostolos Perelas, M.D., a pulmonary disease and critical care medicine specialist in VCU Health’s Department of Internal Medicine. “As a result, as the scarring becomes worse, people are feeling more out of breath, and they become less able to do their daily activities.”

Other symptoms can include a dry cough, swelling of the legs, dizziness, palpitations or chest pains.

There are more than 200 types of pulmonary fibrosis. Fibrosis can happen for a variety of reasons, including prior infections such as COVID-19, exposure to coal or other dusts at the workplace or exposure to mold or birds. Some types of pulmonary fibrosis are idiopathic, meaning that they happen by themselves, or we have not identified yet why they happen.

“Unfortunately, for the majority of our patients, especially those who have a particular type of disease we call idiopathic pulmonary fibrosis, their condition is expected to get worse over time,” Perelas said.

Depending on the diagnosis, treatment for this condition can be as simple as taking a prescription medication along with physical therapy to complex surgeries such as a lung transplantation. The overall goal for most patients is to help make symptoms more tolerable for everyday life.

VCU Health’s Interstitial Lung Disease (LID) and Idiopathic Pulmonary Fibrosis Program, led by Perelas and Patricia Sime, M.D., a world-renowned fibrosis expert, focuses on understanding the disease and raising awareness. The program consists of thoracic radiologists, thoracic surgeons, rheumatologists, pathologists and pulmonologists, who serve about 350 patients in the Richmond region.

VCU Health’s team was recently recognized in 2022 as part of the Pulmonary Fibrosis Foundation’s (PFF) National Care Center Network, a group of 74 medical centers with expertise in accurately diagnosing and treating individuals with pulmonary fibrosis (PF) and interstitial lung disease (ILD).

“For us, fibrosis is more of a team game than one physician game,” Perelas said.

Woman in a striped black and white shirt smiles.

Libby Allen says having a dedicated team and attentive doctors made all of the difference. (VCU Enterprise Marketing and Communications)

Race to recovery

What is pulmonary fibrosis? When will I be able to run again? Those were some of the questions running through Allen’s mind when she searched for a specialist. That’s how she found her way to VCU Health’s Interstitial Lung Disease (LID) and Idiopathic Pulmonary Fibrosis Program, where she met Perelas.

“I immediately thought, he's going to figure this out,” Allen said.

By the time Allen made it to Perelas, she was so weak that she couldn’t walk from her own bedroom to the kitchen without needing oxygen. This was the result of what Perelas identified as developing a progressively worsening shortness of breath over a period of months.

After undergoing a physical exam, imaging and extensive lab work, Allen was diagnosed with fibrotic hypersensitivity pneumonitis.

“When she came to see me, she was on supplemental oxygen and very, very limited. Once I looked at her scans, I realized that she had an inflammatory type of interstitial lung disease that we call hypersensitivity pneumonitis. These are conditions caused by exposure to a number of different agents,” Perelas said. “And we worked very, very closely with Ms. Allen to identify potential exposures both in her house and workplace.”

As a woman who wears many hats, Allen not only enjoys running, but also gardening and working in an antique store. Unfortunately, as noted by Perelas, those two activities may have been contributing factors to her condition. She may have breathed in mold and bacteria from antiques or the fresh mulch she spread while tending the garden.

With the support of Perelas, VCU Health care team and her mother, who temporarily moved in with her, Allen’s race to recovery officially began as she was prescribed blood thinners and steroids to clear up the blood clots found in her body and overall heal her lungs.

“My mother, who kept pushing me to get up, would say “We're going to walk to the end of the driveway. Today, we're going to walk to the end of the cul-de-sac.” And every day I started from January on, just pushing,” Allen said.

Woman in an bright green active wear shirt smiles as she runs.

Libby Allen has now fully recovered from fibrotic hypersensitivity pneumonitis after receiving care from VCU Health experts. She hopes to run the Richmond Marathon with her 21-year-old daughter. (Contributed photo)

Support, medication, breathing exercises, therapy, and — as Allen described — pure stubbornness to run again lead to many successes in her recovery.

By the end of March 2023, three months after meeting Perelas, Allen no longer needed the assistance of oxygen.

“It's very important to catch it early. It's something that most of the time isn’t reversible, but for Miss Allen's case, the earlier you catch it, the more potential you have to preserve your lung function,” Perelas said.

Having a dedicated team and attentive doctors made all of the difference for Allen, who says she regularly reached out with questions if something with her health seemed to take a step back.

“He just cares. He cares about everybody and their goals,” Allen said. “You could email or send a message to Dr. Perelas any time of the day, and he would answer back if I had an issue. With some of the medicines I was on, my feet would get swollen, or I just had strange reactions, and I'd have a response in an hour. I know very few doctors that compassionate and readily available to answer a question.”

Now in full recovery, Allen has stopped working at the antique store and takes extra precautions when it comes to cleanliness and her health. For example, she vacuums her home three times a week to avoid any dust or mold, and she wears a mask around anyone who may have a cold.

She is also training in hopes of accomplishing her ultimate goal of running the Richmond Marathon in November with her 21-year-old daughter.“I will never again take breathing for granted,” Allen said. “I hope that sharing my story will help some others who need some hope.”

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