While area residents are being asked to stay home, to use hand sanitizers, and before the current shutdown, to avoid large groups, some people have been following those strictures for several years.
Mark Nolf, of Fairmount City, has had to make such choices during the flu season each year. It’s a small price to pay though for the extended lifetime he has received.
Nolf is a double lung transplant recipient.
It was during the fall of 2012 that he says he noticed a shortness of breath and after he “finally quit telling myself that I was getting out of shape, I decided to go get an X-ray.” The first X-ray he had potentially showed idiopathic pulmonary fibrosis or IPF.
According to the American Lung Association website, IPF is the “most common type of pulmonary fibrosis” and “causes scarring (fribosis) of the lungs.” Idiopathic means that there is no known cause. The “scarring causes stiffness in the lungs and makes it difficult to breathe.”
Nolf said the disease can go on sometimes for many years, sometimes progressing fast, sometimes slow. He said he found that the average lifespan for someone diagnosed with this disease is anywhere from six months to two years.
“It was seven months by the time I was diagnosed and I wound up in UPMC (in Pittsburgh) for three weeks,” he said. “They gave me some experimental treatment. They felt my immune system was attacking the scarring in my lungs, which made it get very bad very quickly. That worked and they got me stabilized enough to give me time to get a transplant.”
By December of 2013 Nolf had gone through all the evaluation and was put on the transplant list. By November 2014 he would make seven trips to Pittsburgh but would not undergo the transplant surgery for one reason or another. Nolf said he would be prepped for everything and ready to go when word came that the lungs would not work for him. He said, “probably five of the seven times (he) was sitting outside the operating room waiting to go in when we would get the call” that the lungs weren’t viable for him for one reason or another.
“The first time was just an unbelievable roller coaster. It’s not designed to be that way but it happens that way,” he says of those trips to Pittsburgh. “You’re excited, you know. You get ready to take off for down there. We kept a bag of clothes and stuff ready to just grab and go from wherever. I actually kept it in the car with me if we were out anywhere (when the call came).
Each time they rushed to Pittsburgh Nolf would go through a “whole battery of tests.” Once that flurry of activity was over waiting would begin. Nolf said his wait time ranged from 12-20 hours then he’d be prepped and taken down to just outside the operating room. One time he even had an IV started because the nurse thought it was a go and he’d be getting a new set of lungs. Each of those seven times, however, someone would come out and let him know he wouldn’t be having a transplant operation.
He said his emotions when a call came ranged from excited to scared.
By the time the call came that actually ended with Nolf going through the transplant operation he was numb to the process he said. In fact when the doctor first came out to him outside the waiting room and “his first words were we have a good set of lungs and my spirits just soared. And his next words were there’s somebody ahead of you. At that point I kind of shut down and quit listening.” Then he heard the doctor say “Do you want them or not?”
The person ahead of him had decided not to take the lungs, so Nolf underwent the surgery and everything went better than planned. Within seven days he was being released from the hospital.
Nolf says he is back to doing much of want he wants to do but his priorities in life have changed. “I try to enjoy life more as I go because you never know when it’s going to end.”
He actually was able to meet the family of the person whose lungs he now has. The lungs came from Cynthia Rose, who was 15 1/2 when she died from a cardiac arrest at basketball practice.
“I’ve gained a second family,” he says. The first day they met her grandfather he told Nolf, “She picked you...you have a wonderful family...you’re really trying to do good ...spreading the word about donation, she would have wanted to help you.”
Nolf has continued to spread the word about the importance of organ donation through CORE, the Center for Organ Recovery and Education.
He knows first hand how having a donor can give one a new lease on life.