Danielle Keller used to think of organ donation recipients as people whose healthy organs had just worn out.

“I didn’t realize how many children who were waiting, who never had a chance, who were never born with healthy organs, who really haven’t had a chance to live life,” Keller said.

That changed when her daughter, Lexi, was born. Danielle and Nicholas Keller’s firstborn had a severe heart defect that required surgery while she was an infant. Four years later, the little girl had open heart surgery, which was followed by a heart transplant that summer at Children’s Hospital Boston.

“She was in a medically-induced coma,” Danielle Keller said. “She didn’t know she had a transplant until she woke up.”

Lexi Keller, now 7, doesn’t remember much about being in the hospital except that she was scared. So were her parents, who had to leave their two youngest daughters at home during the ordeal.

The Kellers have sent letters to the family of the donor to thank them, but they have never responded.

“Things are so private these days,” Danielle Keller said. “We were just told it was a good heart.”





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Tough decisions

The importance of organ donation has permeated the Keller family. Danielle Keller speaks with junior high school students about organ donation and appears with the family at events through Upstate New York Transplant Services, or UNYTS. The non-profit organization coordinates the donation process in Western New York.

Smaller hospitals like Lockport Memorial are all visited by a UNYTS coordinator, who reviews records and educates people about donation. If a patient is eligible to donate organs, UNYTS is notified and a coordinator reviews the chart.

Before the family is approached about the possibility of donation, UNYTS coordinators meet with other hospital staff, said Phyllis Murawski, the manager of the organization’s organ department.

“We work in a team huddle with the nursing staff and physicians before talking to the family,” Murawski said. “There are family support people with them for support, and they give us an idea when the appropriate time is or isn’t.”

Although organ donation can be a delicate subject with families who have just suffered a loss, Murawski said more people are bringing up organ donation after a doctor tells them their loved one’s prognosis.

That’s something the people at UNYTS likes to hear. Murawski said there are more than 95,000 people are waiting for an organ nationwide, some 500 of which are from Western New York. One person is added every 10 minutes to the nation’s transplant list, while 18 people on the list die each day while waiting for a transplant. About 74 people receive a transplant every day.

April is National Donate Life Month, when groups like UNYTS try to raise awareness about organ donation.

When it comes to the donor families’ wishes, Murawski said the organization’s coordinators are taught to be respectful.

“When we talk to people about organ donation, it’s probably the single worst moment of their life,” Murawski said. “The fact that they are even considering helping anyone else ... we will do anything they want us to do. We say ‘thank you so very much.’ ”

Misconceptions abound

In order for a patient to donate, they must have the permission of their immediate family. Ultimately, the family has the last say on whether or not the patient will donate any organs, Murawski said. UNYTS also recommends filling out a donor card, registering with the state’s Organ and Tissue Donor Registry and signing the back of their driver’s license.

There is a wide variety of reasons why people avoid organ donation. According to UNYTS, donors’ bodies are reconstructed to appear as normal and don’t often interfere with funeral arrangements, including open-casket services. Most major religions believe organ donation is an “act of human kindness.” Donations are given to those who are most in need, which means that no one can buy a place on the donation list. Finally, the donor’s family will not have to pay anything to donate their loved one’s organs; the recipient and his insurance are billed for the transplant costs.

Unfortunately, not everyone can be a donor. Murawski said less than 2 percent of those who die are eligible to be organ donors. Most donors are brain dead, which means neither blood nor oxygen flows to the brain, rendering it permanently unable to function. While the brain no longer works, the person’s other major organs like their heart may still function for a few days and can often be used for transplants.

Waiting for help

Lockport resident Ronald Arne Jr. doesn’t know how long it will take before he gets a liver transplant, but his doctor has told the 21-year-old that he needs to get one as soon as possible.

“I just went for a test in March,” Arne said. “(The doctor) looked at it and said it got worse over the last year and that I needed to get a new one.”

Arne suffers from Crohn’s disease, an inflammatory disease of the digestive tract, and inflammatory diseases of the bowel and bile duct. His mother, Colette Arne, said his cholangitis has caused enough damage to his liver to warrant a transplant. The family looked to itself for a living donor, but the only match may be disqualified.

Right now Ronald Arne Jr. is at home nursing a shoulder injury. Despite his illnesses, he is still able to work at the Seneca Niagara Casino. Once he gets a transplant, he will not be able to work for a year.

“It does affect my daily life,” he said. “I try to run around, but I’m anemic now and then. My friends are pretty supportive.”

Now the Arne’s are looking to the community to see if anyone with a B positive blood type can help. Ronald Arne Jr. was recently reassessed for the transplant list, but the doctors told him that his body is less likely to reject a liver from a living donor.

Colette Arne said she thinks enough people donate their organs when they can.

“God forbid a family member dies, do you want to give up those organs or do you want to spare that person?” Colette Arne said. “A lot don’t feel right by doing that. Not everyone will do that nowadays.”

The donation process

Two sets of brain death tests are completed before a patient may donate, Murawski said. The process may take several days depending on how old the patient is. If the second exam is completed and nothing has changed, the patient is declared legally dead. Before donation, the patient also undergoes tests on his organs to make sure they are healthy enough.

A patient doesn’t have to experience brain death to make some kinds of donations. According to UNYTS, a patient whose heart stops beating (known as cardiac death) may be able to make an eye or tissue donation. That kind of donation only is possible as long as the patient has unrecoverable brain damage and his family decides to stop the ventilator.

Patients who have HIV, cancer or a disease affecting the organ or tissues up for donation cannot be donors.

Once the patient’s family has consented to donation, UNYTS enters that person’s information into a registry, Murawski said.

“We figure out the number one recipient, then call that patient’s surgeon,” Murawski said. “We give them that information and offer the organ to them if they feel the match is good.”

When Lexi Keller needed a heart, she had to wait 47 days while on life support, which kept her at the top of the list. Patients like her would be notified that an organ is available while surgical teams fly into the area to harvest the organs. Then the teams fly home and transplant the organs into their patients. Murawski said the organs will last six to eight hours after they’ve been harvested.

In Western New York, hospitals like Lockport Memorial can host surgeries on donors, but the nearest transplant centers are Buffalo General Hospital and Erie County Medical Center.

Aftermath

UNYTS keeps in contact with donor families long after the donation process, such as Wendy Lanfear. The Lockport resident and special education teacher lost her husband suddenly 18 months ago after the couple had been married for just seven months.

“He died from a fall down the stairs,” Lanfear said. “He stepped wrong and hit his head.”

Lanfear and her husband hadn’t spoken about organ donation, but UNYTS told her he would be eligible. Despite never having said it, Lanfear and her husband’s children finally decided donation would be something he would have wanted.

“They explained everything,” Lanfear said about UNYTS. “We asked all kinds of questions, like if we can still have an open casket. The UNYTS coordinator explained it. She was wonderful for the whole year after. It was almost like grief counseling.”

Lanfear said the UNYTS staff was compassionate. She was approached within an hour of her husband’s death and gently asked if she was interested in donation.

As a former critical care nurse, Murawski saw her patients’ families as her family too. There is a similar relationship between donor families and UNYTS, she said.

“Once everything is up and running, we make sure to honor our families as much as possible,” Murawski said. “It’s a commitment to help during the grieving process.”

UNYTS later sent Lanfear a letter notifying her that her husband’s donations had helped 50 people. His kidneys went to two Western New York men, both of whom were on the waiting list for at least three years.

Now Lanfear displays that letter as coordinator of the Life Lessons program at Lockport High School. She oversees a group of students who learn about organ donation and then create an awareness week to educate their peers.

“My story makes it real to them, especially since the way he died was so sudden,” Lanfear said. “It also got students to open about their experiences.”

Feeling better

Today, Lexi Keller is an unstoppable force. The second-grader attends St. Peter’s Lutheran School in Sanborn and likes to play with her sisters, Hannah, 5, and Ella, 4, in their Pendleton home. The eldest sister lives a pretty normal life assisted by a daily count of 21 pills and regular hand-washing, but it’s not something her family thinks much about.

“It’s part of her routine,” Danielle Keller said.

The Kellers will travel to Boston this month for a regular check-up and biannual biopsy. While most organ recipients suffer at least one bout of rejection in their first year, Lexi Keller has not suffered any rejection with her new heart.

She certainly makes use of it while playing with her sisters. Before the transplant, Lexi Keller had to take breaks in activity.

“Before I had it, I could only run a couple of minutes and then I was coughing,” Lexi Keller said.

“And now you can run without coughing, right?” her mother asked.

“Yes,” she replied.

Before they had their daughter, Danielle and Nicholas Keller hadn’t talked about organ donation. The couple has since had that conversation, and hopes other families talk about it in case something ever happens to them.

“It really is a miracle, especially in our case,” Danielle Keller said. “We wouldn’t have had our daughter unless someone decided to say ‘yes.’ ”

Contact reporter Tasha Kates at 439-9222, ext. 6241.