“I’ve taken my donor everywhere. She’s given me life; the least I can do is to show her the world.”
By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org
Alexis Pavlopoulos had just gotten off the elliptical machine to get a drink of water when she blacked out.
She remembers waking up on the gym floor to the sight of EMTs standing over her.
Her heart was beating wildly – 216 beats per minutes – as medics struggled to slow it down. A normal resting heart rate for adults ranges from 60 to 100 beats per minute.
It was Jan. 13, 2014. Pavlopoulos was 24 years old. She’d always been active, a four-season athlete throughout high school.
She thought maybe she was just out of shape, but after being rushed to IU Health Bloomington Hospital one mile away, she learned she was suffering heart failure caused by viral cardiomyopathy – an infection had weakened her heart muscle.
The next days, weeks and months would be filled with challenges. Like when she had an ICD (implantable cardioverter-defibrillator) implanted to detect abnormal heart rhythms.
She had the flu and was home sleeping on the couch not long after that surgery. She remembers springing up and screaming once, then again and again. Her ICD had shocked her three times when her heart rate climbed close to 300.
After repeat episodes, it got to the point where she was afraid to go to sleep.
When she was sent to IU Health Methodist Hospital for evaluation in May of 2014, doctors discussed the possibility of a transplant but thought she wouldn’t need one for another 10 years. Less than two years later, they determined her heart was failing rapidly.
“THEY HAVE A HEART”
Pavlopoulos was put on the transplant list June 15, 2016. Fifteen days later, the phone rang at her parents’ home in Bloomington.
“I got the call at 9:24 in the morning June 30. I was lying in bed, getting ready to take a shower.”
A heart was available.
She struggled to process the news as fear welled up inside her. From her bedroom, she called down to her mom on the first floor: “Mom, it’s the hospital, they have a heart.”
Pavlopoulos and her family were caught off guard. They expected to wait months for this call, but now they were scrambling to get ready to make the hour-long drive to Methodist.
Before she was going anywhere, however, Pavlopoulos was going to take a shower and shave her legs.
“In that moment, that was the most important thing to me – that I had a shower and shaved my legs. They told me I’d be in the hospital for about 14 days post-transplant and I didn’t know when was the next time I’d be able to shower.”
They arrived at the Indianapolis hospital at about 11 a.m., and soon they would be joined by a host of nervous family and friends. Someone brought in bags of peanut butter sandwiches and M&Ms to keep people occupied.
Pavlopoulos did her best to keep the mood light. When the surgery was pushed back to 7:30 that evening, the medical team asked her if she needed a Xanax to calm her anxiety.
“I said, ‘No, but can you divide it up and give it to all these people?’ ” She still laughs at the memory.
A NEW LIFE
That night – June 30, 2016 – into the next day is when Alexis Pavlopoulos started her new life. The day a new heart began beating in her chest. She was 26 years old.
Less than a year earlier, when her future was uncertain, she had married her longtime sweetheart, George.
“I told him to run. He said he was in it for the long haul.”
Three-plus years have passed since her transplant, and Pavlopoulos, 30, is living a life that honors her multi-organ donor.
“I’ve taken my donor everywhere. She’s given me life; the least I can do is to show her the world.”
Chicago, Virginia Beach, Asheville (N.C.), Cabo San Lucas and last year – Greece, where Pavlopoulos met her husband’s family.
This summer, Pavlopoulos sat down to write the hardest letter she’s ever written – to her donor’s family. Following is an excerpt:
“I hope to live a life worthy of the precious gift I have been given. You and your loved one are never far from my thoughts. Thank you for your generosity and selflessness to choose to give another life. Thank you for making such a sacrifice in the deepest time of your family’s grief and saving my life. Please know that her spirit lives on. I hold her in my heart. And she is with me, literally, with every breath I take. I promise to take good care of her. I promise to honor her with everything I do.”
BEATING HEART IN A BEAR
The letter, accompanied by a bear with a recording of the donor’s heartbeat, was first sent to Pavlopoulos’ IU Health transplant coordinator, Alejandra Darroca, who then forwarded it to the Indiana Donor Network. That organization is responsible for sending it to the family, provided they are interested in hearing from their loved one’s organ recipient.
Darroca believes the bear (and letter) will be meaningful to the family because it is a gift from Pavlopoulos.
For privacy reasons associated with organ donation, organ recipients can’t divulge much personal information in their letters, said Darroca, who continues to coordinate all of Pavlopoulos’ medical care post-transplant, maintaining a vital link between her and her evolving healthcare team.
“Alexis is a very sweet girl, and the bear is a very small part of saying thank you. It’s not enough to say thank you, but I tell her the best thing you can do to thank your donor is to take care of yourself, be a good steward of your heart and help your community.”
Pavlopoulos, “the perfect patient,” is doing just that. She is eating right, working out and staying away from people during flu season as best she can. That can be hard for the self-described social butterfly.
She now is back to working full time in payroll for Indiana University, and she and her husband have bought a house. She uses her Facebook and Instagram pages to reach out to others going through similar health challenges, talking to people around the world.
Now that she knows her letter and bear have been delivered, she hopes someday to hear from the family, but it’s enough that she has been able to share a little of what is in her heart.
“A lot of people have survivor’s guilt,” she said. “I don’t. In my support group, somebody said it best: This person chose to save a life in the tragedy of losing theirs. So you honor your donor. You live a life worthy of receiving that gift.”
To learn more about organ donation, contact Indiana Donor Network.