From the heart: Transplant recipient now helps grieving families give gift of life
Editor's note: This is part of a two-day series that originally ran on May 3, 2018
Kelly Ellinger looked up at the priest standing at her hospital bedside.“Where's my family? If this is it, I need to tell them I love them,” the Cuyahoga Falls woman thought to herself.Less than 24 hours earlier, the otherwise healthy 35-year-old who played in three softball leagues drove herself to the Summa Health Akron City Hospital emergency room.“There's something wrong with me,” Kelly told her father, George Ellinger. “I can hardly breathe. My chest is killing me.”Her flu-like symptoms from a few days ago had worsened and back pain had begun to radiate to the center of her chest and down her arm.At the emergency room, a doctor whisked Kelly to the heart catheterization lab as she cried on the cold February day in 2003.“M'aam, you're having a heart attack.”But it was not a heart attack.
Within 2½ hours, doctors alerted her waiting family she was in complete heart failure, though they couldn't figure out why. No arteries were blocked.“She needs a heart transplant,” a doctor concluded.Kelly's mom, Carol Hohman, fell to the floor.Little did the family know that this was the beginning of a journey that would bring Kelly full circle after her own heart transplant to a new career helping grieving families who decide to donate their loved one's organs.Doctors and Kelly's family initially agreed not to tell her she needed a heart transplant. Doctors placed a balloon pump in her heart to keep the blood flowing. The next morning it failed.“We're losing her,” a doctor told her parents outside her room while the priest was at Kelly's bedside.A decision was made to send Kelly to the Cleveland Clinic's main campus for more intensive care. A large medical bus transported her ahead of a blizzard that made travel by helicopter too risky.“The next 72 hours are critical,” a doctor warned her family. “We don't know if she's going to make it.”For the next two weeks, teams of doctors came up with theories about what caused her heart to fail:Myocarditis, an inflammation of the heart, often caused by an infection.An infection from a rash, which developed after she had been to a tanning bed.On the 14th day, pulmonologist Dr. Mani Kavuru diagnosed Kelly with Churg-Strauss syndrome, a rare autoimmune disease that attacked her heart. Kavuru put her on large doses of steroids and told her she would need a transplant. Kelly was in denial.Three weeks after she arrived at the clinic, Kelly was sent home, about mid-March. She temporarily moved in with her father, wearing an external heart defibrillator. She was so weak she couldn't even lift her arms to wash her hair.Kelly tried to return to her job as an interior designer part time. She was too tired.She went for regular cardiologist appointments and visits to the emergency room to drain fluid out of her lungs since her heart was not strong enough to pump it out.Seven months later, in October 2003, Kelly's Clinic cardiologist, Dr. Randal Starling, told Kelly she needed to be put on the heart transplant list.Again, Kelly was in denial.“I'm not doing that,” she said. “I don't need to play softball. I'm getting used to this.”Starling replied, “Your heart is not going to last another year.”Kelly and her father, George, left the appointment and burst into tears in the elevator.In January 2004 and after 11 months in heart failure, Kelly started tests to prepare for the transplant list.
Getting on the list
On April Fool's Day, her phone rang.“You're on the list.”Kelly was told spring is commonly donor season, when motorcycle drivers tended to get into fatal accidents.“It could be you,” she thought to herself as she sat on her front porch, watching motorcyclists flying down her street during the unusually warm spring.Kelly struggled to sleep most nights, consumed by the thought that someone was going to die so she could live.On May 1, 2004, Kelly was in a church meeting learning about a trip to the Holy Land that other church members were taking.Her phone rang. It was a Cleveland number.Her hand started shaking. She walked toward the back of the church.The woman on the phone from the Clinic's transplant program asked Kelly, “How are you feeling?”Kelly knew why she was asked the question. If a patient on the transplant list is sick, even with the sniffles, they will get passed over.“I'm fine. I'm at church.”“We think we have a heart for you.”Kelly was told to go home immediately and wait to hear within a couple hours whether the transplant was a go.The organizer of the Bible Study stopped the discussion and turned to Kelly.“Is everything OK?”“It's the clinic,” Kelly responded. “They think they have a heart for me.”The fellow church-goers gathered around Kelly, laid their hands on her and prayed.Within several hours, Kelly got another call at home, this time instructing her to come to the hospital to get her new heart.Kelly and her father held hands and prayed as he drove to the clinic. They arrived by midnight.The next morning at 9 a.m., the transplant team came for Kelly.In the operating room, Kelly recited the Lord's Prayer while the anesthesia took effect.“Our Father, who art in Heaven…”The two-hour surgery was a success.Within three days, Kelly was walking on a treadmill. Within nine days, she was home.
New purpose
Once she was well enough, Kelly started volunteering by telling the story of her transplant for Lifebanc, the Northeast Ohio organ and tissue recovery organization and part of the nationwide network that coordinates organ transplants.She realized she wanted to make organ donation her life's work. Kelly went back to school and earned her social work degree with honors from Malone University in 2009. She volunteered and interned for Lifebanc.
After graduating, she started working full-time as a family support liaison for Lifebanc at Akron City Hospital, the place where her own transplant journey began.She now works on a Lifebanc team that covers 80 hospitals throughout northern Ohio.In her role, she meets with families who are facing a loved one's death and asks if they want to give the gift of life. A liaison comes to see a family after the loved one has been declared dead and stays until the final goodbyes take place and organs are procured.“Everybody I meet every day is losing someone,” she said. “I'm meeting them at the worst days of their lives. Every day is not a very good day for me.“But you know what? There was a family that did this for me.”In nine years as a family support liaison for Lifebanc, Kelly has only told a handful of families about her own transplant. She only shares her story if asked or when she feels it would help a family.In the past four years alone, she's likely helped to save the lives of more than 400 people by working with 159 donor families, according to estimates from Lifebanc. Each donor provides an average of three organs.But the work has taken its toll on Kelly.“It's hard because you know they're losing somebody. I'm driving home and my face is streaming with tears. And I worry about them and I pray for them.”Heroin overdoses and the young children left behind are the hardest for Kelly. She has walked into hospital rooms to find someone she knows personally.
New life
Kelly does not know anything about the donor of her heart. While some organ transplant programs are able to coordinate families who want to connect, not all efforts are successful.She wrote a letter to her donor's family in the summer of 2005, a little more than a year after her transplant.Kelly wanted to tell the family that she had gone on that trip to the Holy Land, where she was baptized in the Jordan River, and that she was going to school to become a social worker.The donor's family received the letter and Kelly was told they received a lot of comfort. But they never wrote back. She wrote a second letter five years later and it never got delivered. The family had moved.Kelly thinks it's better for her not to know who gave her a heart.“It would tear me up to know it was somebody young — somebody who had their whole life ahead of them… The Lord probably figured I couldn't handle it and said, 'You don't need to know who it was, just know that I took care of you.' ”“I figure when I'm done, that person will come and meet me at the door.”With every heartbeat, Kelly carries a tremendous responsibility to make the most of the life she's been given by someone whose own ended too soon.“Every day,” she said, “I have to do something worthwhile.”Despite being constantly surrounded by sadness and loss, Kelly knows she is helping those grieving families let a part of their loved ones live on through organ donation.On June 9, 2015, Kelly was called to University Hospitals Rainbow Babies and Children's Hospital.Seven-year-old Melody Kashawlic had just been declared dead after an asphyxic asthma attack.
She can still picture Melody in the hospital bed, looking like a little angel.“She had nothing physically wrong with her body. She was as perfect and beautiful as could be.”
Read Day 2 of the series: From the heart: Families forever tied by little girl’s gift of organs
Beacon Journal staff reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ To see her most recent stories and columns, go to www.tinyurl.com/bettylinfisher
This article originally appeared on Akron Beacon Journal: From the heart: Transplant recipient now helps grieving families
