At 19, a heart attack is one of the furthest things from a person’s mind. For Ryan Sule, a 23-year-old NMU student who is currently awaiting a heart transplant, it was the age when the concern became very real.
On Thursday, Sept. 18, contributions will be collected at the NMU v. MTU football game to help Sule’s family with uninsured expenses related to his heart transplant.
The need for the transplant dates back to August 2001, when, during his first day on campus, Sule suffered a serious heart attack.
According to his mother, Karan Hendricks, Sule’s parents were helping him move in to his dorm room when he collapsed.
“I knew what it was right away,” Hendricks said. “I had been trying to get doctors to test him.”
She knew Sule was at risk for cardiomyopathy, because the same condition caused his biological mother’s death when he was young, Hendricks said. Cardiomyopathy is a disease that causes the heart muscle to inflame, often resulting in failure.
Because of Sule’s age, however, doctors at Marquette General Hospital didn’t immediately suspect it was a heart attack, Hendricks said. After searching for other explanations, an electrocardiogram confirmed what it was, and he was transferred to the Mayo Clinic in Rochester, Minn. for further treatment.
When they arrived at Mayo, Sule’s cardiologist asked Hendricks what it was he needed to do to make Sule feel most comfortable.
“I told him that Ryan needs to know he’s going to live, and he needs to know he’s going to go back to school,” she said, “He wanted to live in the dorms, he wanted to eat dorm food, and he wanted to experience all college had to offer.”
Despite knowing the problems he faced, Sule returned to campus within a week. Although his wish for the college experience was fulfilled over the next four years, his heart gradually worsened.
He is currently receiving treatment at the Mayo Clinic and is on an IV pack, which will help strengthen him for a heart transplant, Hendricks said. He has been on the waiting list for a heart since last September and recently has moved to 1B on the list, a priority category for patients who are critical, she added.
Because Sule was hospitalized at press time, he could not be reached for comment.
“We are hoping soon we’ll get a heart,” Hendricks said, “It’s hard, because you need a heart and you want a heart, but in the same breath you know someone else is losing their life for your son to live. That’s a hard place to be.”
Hendricks said they are hoping for a heart within the next few weeks, but the doctors make no guarantees. They have chosen to keep Sule at Mayo because if a heart becomes available, it is only viable for six hours, she added.
Despite being at Mayo, Sule continues to take online classes and by next semester will only need one credit in order to graduate, Hendricks said. He hopes to graduate in May with a degree in Geography.
Because his biological parents are deceased, Sule had received survivor benefits from the state of Illinois up until six months ago, Hendricks said. He is currently covered by Cobra Continuation Coverage, which according to cobra-health-insurance.com only lasts 18 to 36 months, depending on state wide requirements.
After he is uninsurable, Sule will only be covered by Medicare, Hendricks said.
Hendricks estimates her son’s uninsured expenses to date have been about $50,000. Sule is currently on $300,000 worth of medication and will have to pay between $20,000 and $40,000 a year toward the medication for the rest of his life, she said.
The fundraiser is being put on by the NMU Volunteer Center and Students for Organ Donation. All contributions made will go directly to the National Transplant Assistance Fund (NTAF), the organization Sule’s family is fundraising through, and placed in to a fundraising campaign specifically for Sule.
Judy MacGregor, a patient service worker at NTAF, said going through the school is one of the best ways to fundraise.
“Where you want to raise money is where someone knows the patient,” MacGregor said. “When someone is a student, (like Sule) the school is a fabulous place to fundraise because everyone wants to help.”
Sule’s family came in contact with NTAF through the social worker on their case, MacGregor said. When a patient is brought to the transplant center, the family meets with a social worker, as well as a financial advisor.
“There are so many hidden costs in transplants,” MacGregor said. “Most people have to fundraise even if they have insurance.”
Kristi Leidi, an event coordinator for the volunteer center, said a family member contacted Northern after NTAF suggested getting the school involved.
Booths will be set up at both main entrances in the Dome. More information about Sule will be available, as well as a place to contribute.
Students and community members can give contributions while buying tickets, concession items or just passing by.
“Basically, if people are entering the Dome, they will see us,” Leidi said.
Danielle Foulks, president of Students for Organ Donation, said the volunteer center contacted them to help.
“We work a lot with the volunteer center, and we also do the Gift of Life Challenge, where we try to register as many donors as possible,” she added.
In addition to taking donations for Sule, people will also be able to register as an organ donor at the football game, Foulks said. All that is needed is a driver’s license from any state, since the registry is national.
The volunteer center and Students for Organ Donation are also combining to create a benefit spaghetti dinner for Sule within the next month or two, Foulks said.
For more information about contributing to Ryan Sule, contact National Transplant Assistance Fund at 800-642-8399 or visit the NTAF Web site at http://transplantfund.org
