“Heart sisters” wait for lifesaving transplants

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Samantha Hacker and Jamie Purvis have been cardiology patients at Riley Children’s Health their entire lives, but they met for the first time just this year.

Now they consider themselves “heart sisters.”

Hacker, 30, of Bloomington, and Purvis, 32, of Wabash, were admitted to Riley Hospital for Children several months ago, each waiting for a heart transplant.

For now, Riley is their home, and they’re doing their best to stay strong and ready for lifesaving surgery.

One of the most important things they do is help each other through the ups and downs of living with heart failure.

“To have someone who understands all the little feelings that you never thought were normal, it makes such a difference,” Purvis said. “Sam is a very caring, generous and open person who will always be there for me, who will always offer support, no matter if it’s an ugly day or we’re having fun. She’s there.”

Hacker feels the same way.

“I look forward to talking to Jamie because I know at least we’re going to be laughing about something. She can relate to how I’m feeling, and we can talk about our experiences. I’ve never had that person I could talk to about my heart issues that has actually been through something similar,” she said.

It’s not the first time adult patients have spent months at Riley, nor is it the first time that more than one adult has been inpatient waiting for a heart transplant at the same time.

Riley treats congenital heart defects in kids through adults – up to and including transplant.

Both were diagnosed shortly after birth with heart defects – Hacker with tricuspid atresia and hypoplastic right heart syndrome, and Purvis with hypoplastic left heart syndrome, atrial septal defect and ventricular septal defect.

They’ve had multiple surgeries, most performed by the esteemed Dr. John Brown, who retired in 2020 but still occasionally assists in the operating room.

“He has meant so much to me growing up,” Hacker said. “Just seeing him again would be nice.”

Hacker and her husband, Jon, have a daughter, Kaylee, who has made new friends with pediatric patients on the unit since her mom has been at Riley.

Purvis shares four stepchildren with her wife, Gena McDonald.

Together, the women and their spouses have formed a bigger family that includes other patients and parents on the Heart Center.

“We all look out for each other, in every way we can,” McDonald said. “Without us bonding together like we have, it would be hard to get through the day.”

They enjoy pizza and movie nights, making art, playing games and visiting with loved ones while they wait for word that a good heart has been found.

The two have had several offers, even matching on the same heart at one point, but none have been quite good enough for surgeons to take the risk.

“I told my husband this is my one and done,” Hacker said about transplant. “I won’t do it again. I’ve been a heart patient my whole life and I’m just tired. I’ll do this and that’s it.”

Committing to staying at Riley until a donor heart becomes available was rough for Hacker, who misses being home with her family.

“It’s hard to be a mom when you can’t be present all the time. When I was a child and here for months at a time, I was still carefree,” she said. “It was very different. Now, I have responsibilities outside of here and all these things running through my mind.”

One of those responsibilities was finishing her degree in psychology. She completed her course work last week. Hacker already has a degree in early childhood education, but she wanted more.

“I don’t want to be defined by my health. That’s my big thing, pushing through,” she said. “I want my daughter to be proud of me. I want to make a difference in the world, even if it’s something small.”

There’s nothing small about Hacker’s impact on the unit. She befriends pretty much everyone she meets, including the younger patients. She works on crafts with them, watches movies with them and plays games with them. She wears a necklace made by a young patient that says “best friends.”

Still, she and Purvis can’t help but be apprehensive about transplant surgery and life after transplant. For their entire lives, they’ve been told what they can’t do, which snuffed out some of the joy of being a kid.

Purvis, who celebrated her 32^nd birthday on the unit last month, said she sometimes struggles with the idea of receiving someone else’s heart.

“It’s beyond what I can really speak to,” she said. “There are no words I can give it that do it justice.”

And having a full functioning heart, well it’s hard to even imagine what that will feel like, both say.

“You’re going to be able to do all these things that you can’t regularly do, and I don’t know how that’s going to feel,” Hacker said. “Like walking my dog normally. I don’t know yet. I’m so used to my heart and knowing what my heart needs. It’s going to be a big 180.”

Transplant cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy have been anchors for the two since Hacker and Purvis were little girls.

Hacker remembers telling Murphy more than once that she couldn’t retire until Hacker gets a new heart.

“I just love that woman,” Hacker said. “She is wonderful, making herself available to talk about all my concerns.”

And Dr. Darragh has seen them both through many ups and downs. His presence is always reassuring, they said.

“Dr. Darragh wears his heart on his sleeve, and all of his patients mean something to him,” Hacker said. “He listens, and he hears you when you’re all in your feelings.”

“You can tell he really cares about you, not just as a doctor,” Purvis agreed. “He forms a bond. He takes the time to get to know his patients and actually have that rapport. He’s very valuable to both of us.”

After transplant, the two women will transition to IU Health Methodist Hospital for care, but they’ve promised to keep in touch, even talking about taking a trip to Disney World some day to learn what it feels like to be a kid.

Riley Children’s Health is ranked among the best in the nation by U.S. News & World Report for its cardiology and heart surgery programs.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org