Living Life Full Speed
January 16, 2010
By CHRIS MORRIS
Kerry Geron has never paid much attention to statistics. She has always put more faith in perseverance and determination, which are measured by a person’s heart, not by a calculator.
Geron has already beaten the odds. She gave birth to two children, and lived a relatively normal life for eight years with pulmonary fibrosis, until her ailing lungs quit functioning which forced her to receive a bilateral lung transplant in December 2008. In just 13 months since her transplant, Geron has participated in a 15-mile bicycle ride, played a pick-up game of ice hockey, and continues to workout regularly with weights and yoga. And in her spare time, she rides a bike upwards to 60 miles a week, attends her children’s activities, and lives her life at full speed.
Statistics of life expectancy, or the restrictions associated with a double lung transplant, never enter her mind.
“I have always been a very energetic person. I always fight for the underdog,” she said, with a big smile. “I don’t want to get into that [life expectancy]. If I worried about that I wouldn’t be able to live life the way I want to live it. I am still going 11 years after I first noticed symptoms and eight years after being diagnosed. I don’t think about stats. I expect to live a long life.”
No one will bet against her.
Geron, 39, never smoked, always took care of herself and lived a healthy lifestyle. But that didn’t prevent her from being struck with one of the most deadly diseases never talked about. Pulmonary fibrosis is the result of excessive scarring of lung tissue. As the disease progresses the air sacs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker, causing an irreversible loss of the tissue’s ability to transfer oxygen into the blood stream.
Geron said she began having symptoms — a cough that wouldn’t go away — in 1998. She said she was sick all the time and could not stay healthy. At first doctors told her she had asthma, or was suffering from allergies. But she knew otherwise. “I would have these coughing attacks where they would be so violent I would vomit,” she said. “If I learned anything through this it’s that you are your own best advocate. You know what is wrong with you.”
Finally, in 2001 and after seeing six specialists, Geron received the news. She only had 50 percent lung capacity. She had pulmonary fibrosis.
“I called my husband and told him I was dying,” she said.
She credits pulmonologist Dr. Kenneth Anderson for being with her every step during her journey, from being diagnosed, to the day she received her new lungs at Clarian Methodist Hospital in Indianapolis.
It is estimated that in the United States there may be more than 500,000 people who suffer from the disease and 40,000 will die from it each year. The average age of diagnosis is late 60s and the survival rate from the time of diagnosis is five years or less.
Geron was determined not to become a statistic.
She remained stable for a long period of time after being diagnosed. She had her daughter, and a son, and continued to live an active lifestyle.
“In my mind I was stable,” she said. “Doctor Anderson said I was a medical anomaly. He said I was so high functioning it was crazy.”
But after giving birth to her son five years ago, her health began to decline. She had to stop playing sports and the disease was affecting her life more and more. Her lung capacity dropped to 20 percent and she was forced to go on oxygen.
But she still was not ready to become a statistic.
Even wearing oxygen, she lifted weights at the YMCA and did yoga. But there came a time when she had to go on a donor list, and her active lifestyle became dormant.
“The can’ts started piling up,” she said.
She went on the donor list in April and on Dec. 18, 2008, she received her new lungs and a new lease on life.
“The time I got the transplant was the right time. It was very risky, but I had no choice,” she said. “I will do whatever it takes to be here for my family. I want to be able to play with my kids and run them around to activities.”
It didn’t take long for Geron to resume her active lifestyle following the transplant surgery. She began walking 23 days after surgery, and in June, just six months after receiving new lungs, she rode a bike 10 miles and continued her yoga. She even played a game of ice hockey with friends on her birthday in July.
“It’s wonderful,” she said of her new lungs. “Every single time I do something that I wasn’t able to do before, I pause. I remember the first time I was able to sing at church, I became hysterical.”
Dr. Dan Rose, president of the Pulmonary Fibrosis Foundation in Chicago, said the survival rate for lung transplant has “improved considerably” in recent years. He said the five-year survival rate is 50 percent, but with young, healthy patients, can be much higher.
“The technique has improved,” he said. “It’s not a normal life, but it’s a good quality of life. Kerry is a highly motivated individual. She is an inspiration to all of us.”
Geron has had a few setbacks over the past 13 months. She has had two bouts of rejection — in February and March — and this past November developed pneumonia and was hospitalized. She takes several pills each day and always uses “common sense” when it comes to being around a large group of people. She sometimes has to wear a mask outside, especially when she is doing yard work.
“I do whatever I have to to stay healthy,” she said. “But you get a transplant so you can live your life.”
Geron said she could have never made it through her ordeal without the love and support of her husband, Kevin, her two children, Kami and Kurt, and her extended family and friends.
“My husband has been hugely supportive. He has been through it all with me,” she said. “I have great family and friends. My support system is wonderful.”
Geron said she wants to raise awareness about pulmonary fibrosis. She said people don’t understand the disease, which gets little attention.
“As many people will die from pulmonary fibrosis this year as they will from breast cancer. And no one has heard of it,” she said. “That drives me crazy.”
She also said when she was forced to wear oxygen, people would look at her like the illness was her fault.
“That would make me so mad. People thought I did this to myself because I was a smoker,” she said. “I never smoked in my life. But that’s OK because if a smoker saw me on oxygen and then decided to quit, it was a positive thing.”
Rose said his organization donated $3 million to research last year. He said more breakthroughs are being made each year.
“We are pretty close to identifying the bio-markers ... who is at high risk of getting pulmonary fibrosis,” he said. “It’s exciting.”
Geron continues to push herself and live life to the fullest. She doesn’t worry about can’ts anymore, and said she expects to live a long, full life.
“I feel wonderful,” she said. “If I live one day shorter than I am suppose to, I will be really mad.”