Pulmonary Fibrosis Awareness Month

Cincinnati woman Tammy Robinson was young and active until idiopathic pulmonary fibrosis derailed her life.

By the time she was in her 40s, she was so breathless that she struggled to walk the short distance between her car and the door to her work. But now, she is able to compete in events like the American Lung Association’s Fight For Air Climb at Carew Tower thanks to a double lung transplant. During September for Pulmonary Fibrosis Awareness Month, she is sharing her story to inspire others who have been diagnosed with the disease.

In early 2000, Robinson became fatigued, short of breath and had unexplained weight loss. Her doctors diagnosed it as stress and mild asthma, but this illness continued about every six months for years. After several tests and a lung biopsy, she was diagnosed with idiopathic pulmonary fibrosis at just 43 years old.

“I lived with pulmonary fibrosis for many years,” said Robinson. “I worked for a while and then I noticed that I was struggling to walk from my car into work. With pulmonary fibrosis, you can’t catch your breath. Simple everyday tasks become nearly impossible due to shortness of breath. It is very scary.”

At that point, she was unable to work. On April 9, 2015, her disease was so bad that her doctors told her that she needed a double lung transplant.

“ It was devastating to hear that I needed a  Double Lung Transplant to save my life.” “My emotions went wild,” she said. “After 3 months of waiting  for an appointment, my Lung Journey began, so that I could be placed on the Lung Transplant List.”

On March 9, 2016, Robinson got the call she had been waiting for — the hospital had received donor lungs for her. But she wasn’t out of the woods yet. Lung transplants are very complicated and serious surgeries. Robinson had several life-threatening complications, which resulted in her being in the intensive care unit for 45 days, for a total of 90 days in the hospital.

“I am truly an organ transplantation success story,” said Robinson. “I took a year to recover, but I never gave up the fight. You have to have will, determination, and a positive attitude to make it through something like this.”

With a new set of lungs, Robinson is able to do things that she has never done before. In August 2018, she traveled to Salt Lake City, Utah to participate in the Transplant Games of America where she competed in the 5K race and volunteered. On February 10, 2019, she participated in the Fight For Air Climb at Carew Tower in Cincinnati with four other people who had received lung transplants. For the event, she climbed 45 floors, for a total of 804 steps and raised more than $300 in the fight against lung disease.

“I was slow, but I was bound and determined to reach the top,” said Robinson. “I hope to do it again this February.”

Today, she is feeling great, travels often and focuses on doing things that she has never done, like the Fight For Air Climb. She is sharing her story to raise awareness about pulmonary fibrosis and also inspire those who are currently living with the disease.

“If you are newly diagnosed, definitely don’t read what you see on the internet,” she said. “Stay as active as possible and try to eat the best that you can. It is OK to be sad and angry when living with this lung disease. Build a strong support system to get you through those tough times.”

To learn more about the Fight For Air Climb at Carew Tower, happening on February 9, 2020, visit FightForAirClimb.org/Cincinnati.

Tammy – Transplanted: March 9, 2016

Story originally published by the American Lung Association

Support Lung Transplant Foundation

A lung transplant transforms lives affected by diseases such as cystic fibrosis, pulmonary fibrosis and COPD. These diseases affect more than 15 million Americans and are the fourth leading cause of death in the United States. Rejection rates for lung transplant recipients are worse than that of any transplanted organ. We want to change that through funding research to stop all lung transplant rejection. We can’t do it alone. We invite you to help people like Tammy. Make a donation or learn more about how you can be involved.