by Sherida Mock
Johnny Costarell recently turned 14, but he’s already gone through two heart transplants. His first was at age 3, when his original heart gave out. Then in March 2015, it became clear that Johnny’s transplanted heart was failing. The Costarells went into crisis mode. His mother, JoAnna, quit her job to be with Johnny in Houston while he awaited a new heart.
As the months dragged on, Johnny’s spirits flagged. But the community cheering for him at home rallied to keep him going, and Johnny received a new heart in November 2015. He and his mother spoke to us from his hospital bed at Texas Children’s Hospital in Houston.
af: When did Johnny get his original diagnosis?
JoAnna: Johnny was born perfectly healthy, but when he was about 12 hours old, he went into distress. They were able to keep his heart going until he was almost 3. At that point, all they could do was a transplant.
His blood pressure was so high, he was denied by the transplant board twice. The doctors really fought to get his numbers where they needed to be. But the surgery was perfect, and his recovery was great. He had that heart for 11 years, which is a good average.
af: When did you find out that Johnny needed a second transplant?
JoAnna: On March 17, 2015, he had his annual heart test. He went in feeling great. We were just at the Austin Fair and Rodeo two days before, and he was going on all the spinning, fast rides. But any time they would mess with his heart, it would stop beating. His heart actually stopped beating for four minutes. He went straight from there into ICU, where he was sedated for a few days to recover. They told us the only thing they could do was a second transplant.
af: What was the community response?
JoAnna: It has been amazing. We are just so overwhelmed. Johnny’s school, Leander Middle School, sent us cards to cover an entire wall. They did a fundraiser and dedicated an entire week with different dress up days of all Johnny’s favorite things. They ended the week with a pep rally. You could pay $1 for a piece of duct tape and tape your favorite teacher to the wall.
I was the receptionist at Leander High School. I had to quit my job, and they gave me an amazing bag of cards and goodies. The dance team gave gift cards and goodies. The Lady Lion volleyball team combined with Cedar Park High School’s volleyball team at their rivalry game in September. They pick a family in need to donate to every year, so this year they did it for us.
We had another friend that started a t-shirt fundraiser. There were hundreds sold. It was very humbling. And another family friend started a GoFundMe page, which we were hesitant on, but when you’re down a job and you have an extra living expense and travelling—my husband and daughter were traveling hundreds of miles every weekend—we needed it.
I don’t know where we would be if we didn’t have our community and all our friends supporting us.
af: What are some of the challenges you’ve been going through?
Johnny: I was losing hope and didn’t feel the need to continue with school.
JoAnna: We learned that was very common with transplant kids who have been on the wait list for quite some time. Texas Children’s was amazing at helping Johnny get through this. We just met with homebound school services today.
Johnny: There’s some physical limitations. I can’t play football.
JoAnna: Anything that would have a hard hit to the chest, he’s not allowed to do. But, pretty much anything else. He could do swimming, soccer. He was taking tumbling classes, and he did cheer at Leander Middle School.
af: How are you doing now?
Johnny: I’m doing good. I’m excited to get back on track. We’ll hopefully be back home around February 1. I’m looking forward to being with all my friends again. I look forward to doing high school cheer and tumbling.
JoAnna: I’m just happy to say that we can start making those plans for the future.
af: Any last thoughts?
JoAnna: I want to say that how thankful we are to everyone at Texas Children’s Hospital—the staff, nurses and doctors. Johnny is here today because the doctors and nurses here are such heroes. From the bottom of our hearts, we are so grateful to the donor’s family. What they gave during their time of grief is the ultimate gift. Their graciousness has allowed Johnny to continue living. DonateLife has been amazing. Ronald McDonald House is an incredible organization. I can’t say enough about them.
And I’m glad that I started the Facebook page (Johnny’s Heart Journey). That was definitely not my personality, but there were so many people who were interested and had known Johnny. I thought this would be the easiest way to get the word out and keep people up-to-date. It turned out to be therapeutic for both Johnny and me, to see all the well wishes and love and prayers from so many people. It helped tremendously. I never thought something so simple could have helped us so much.
About 124,000 people are awaiting organ transplants in the U.S. Visit DonateLifeTexas.org for information about tissue and organ donation.
Ronald McDonald House Charities help families stay close to a child going through hospitalization. Visit RMHC.org for more information.
February is American Heart Month. For tips to keep your own heart healthy, visit Heart.org.