AUBURN | "Can I watch the SU game?"
That was the question Auburn resident Anny Ockenfels asked her family after she discovered her double-lung transplant surgery was a success. Ockenfels has battled cystic fibrosis her entire life and needed the transplant to make the battle easier. The operation itself took seven hours and Ockenfels could not speak afterward, so she had to write out the question to her attending family members.
She wanted to watch the game. It was the Final Four, after all.
This is the type of person Ockenfels is, according to her family members. She has always downplayed her disorder, doing her best to keep it from being the center of attention.
But on a Sunday afternoon at the Ancient Order of Hibernians in Auburn, there was no avoiding the overwhelming amount of support she has received.
More than 100 people attended a benefit to raise money for Ockenfels' battle. All proceeds were for Ockenfels primarily to pay for her out-of-pocket expenses not covered by her insurance.
These expenses include her medical flight to Cleveland, where her transplant took place, as well as her parents' living expenses in the Ohio city where they have been by her side since she was transported. The flight amounted to almost $10,000 and her parents living expenses are about $1,600 per month.
Ockenfels' sister, Jennifer Ambrose, said they had made $10,000 before Sunday's event had even begun.
"The support from family, friends, acquaintances, businesses, people we don't even know has been very overwhelming, generous and humbling," Ambrose said.
In March, Ockenfels had received some creative support from students and staff at the Cayuga-Onondaga BOCES via the Harlem Shake.
Live music was performed at Sunday's benefit by local band Silver Queen Casket Co. and DJ Tim Murphy. General admission was $10 with raffle tickets on sale and attendees could participate in a silent auction for a variety of prizes.
The benefit was hosted by a group of Anny's friends and family named Anny's Angels, a name that Ockenfels bestowed on them when she began preparation for her surgery. Raffle prizes included more than 60 gift baskets with a variety of prizes including some photography taken by Ockenfels herself.
Photography is one of Ockenfels' many hobbies, which also include reading, traveling and skeet shooting. But cystic fibrosis has left her little time to enjoy these hobbies, and skeet shooting is something Ockenfels will not be able to do at all after the double-lung transplant.
Cystic fibrosis is a genetic disorder that results in mucus buildup in various parts of the body, including the lungs and the intestinal tract, and leaves Ockenfels very susceptible to infection. Ockenfels has dealt with the disorder all of her life, but really started to display signs of it affecting her when she was attending college on her way to a bachelor's degree in business in 2007.
A typical day for Ockenfels before the surgery included about five hours of treatments performed to keep her healthy, Ambrose said. This included one-and-a-half hours of a respiratory treatment involving a cystic fibrosis vest designed to clear away any mucus and secretions from her lungs through vibrations. Ambrose said cystic fibrosis took away her appetite, so she uses a feeding tube to keep her weight up.
She would sometimes have to work from home for her job with O'Hara Machinery if she was not feeling well enough to go into the office. Her brother, Patrick Ockenfels, would go to her every night to perform more physical respiratory treatments for 45 minutes at a time.
"If I had to describe my sister with one word, it's 'strong,'" Patrick said. "She's silently strong."
Ockenfels was also going to Upstate Medical in Syracuse regularly to participate in their cystic fibrosis program and attended Planet Fitness two or three times a week. It was decided in January by physicians at Upstate and the Cleveland-based hospital, the Cleveland Clinic, that she would be transferred to Cleveland and put on the lung transplant waiting list.
Seven weeks after her transfer, doctors found a compatible set of lungs for Ockenfels. The surgery took place Apr. 6, fitting as April is National Donate Life Month.
"We were all very excited — excited, but nervous," Ambrose said. "It's a huge surgery."
The double-lung transplant gives her a new set of lungs unaffected by cystic fibrosis, which allows her to endure her treatments easier, Ambrose said. She will be sore for a year or so and she will have to make adjustments to her life that she did not have to before due to her condition. For example, Ockenfels needs to buy a car with air conditioning since she cannot breathe the open air.
"She'll have to balance between living her life and being safe," Ambrose said.
Ockenfels will live her life with the support of countless others including, but not limited to, friends and family, the Cystic Fibrosis Foundation and people she has never even met before. This includes the donor of her new set of lungs.
"Thanks to a wonderful family's generosity, I have been given a second chance on life," Ockenfels wrote in a statement. "A chance to live longer and enjoy and appreciate the little things in life, an overwhelming experience that I will never forget and will always be with me."