David Cary and his family run a blog called “Still Thankful,” which is an acknowledgement of the fact that despite the severe health challenges their son Trenton has endured, they’re still filled with gratitude about where they’ve been, and where they are now. Recently, 1heart2lives spoke with David about Trenton’s story, what it’s like to live with a heart transplant, and how Still Thankful began.

When did you first learn about Trenton’s heart issues?
Valerie’s (Trenton’s mother) family has a history of heart problems in the women on her side of the family. One day when Trenton was about 11 months old, he was acting really lethargic over the weekend. We scheduled an appointment to see a doctor on Monday afternoon, but Valerie’s instincts kicked in and we took him to the ER that morning. She saved his life, because he stopped breathing in the ER, and doctors saw this heart was enlarged by 50%. While we were at the hospital, I saw someone from my church who let the community know where we were and what was going on, and there was a tremendous outpouring of support from them. It’s one of the many things we’ve remained grateful for.

Trenton, as a baby, post-transplant.

After four days with Trenton in the ICU we thought he was getting better. On Monday he was taken to the hospital, and by Friday was taken off the machines. I went home to rest, but Valerie stayed with Trenton in the hospital. At 4:00am that night, Trenton was in cardiac arrest. Trenton was gone for 9 minutes, and we didn’t know if he was going to make it. From there he underwent testing and was put on the transplant list.

One thing many heart transplant recipients express is the mixed feelings of both gratitude and guilt about receiving the heart. Can you tell us little more about the emotions surrounding this experience?
There’s certainly several difficult feelings to contend with. For instance, when we finished the testing and Trenton was listed, the doctor told us, “You need to be prepared to wait because this is March and babies don’t just pass away for no reason; this is not pool season.” It was a very morbid discussion about whether Trent could survive long enough for a heart. And I struggled with, am I praying for a baby to die so my baby can live? It’s certainly something we still think about today, because there’s only one way a heart becomes available for transplant. We ended up waiting only 2 and a half days before there was a heart for Trenton, and it was a miracle. Normally a heart transplant surgery takes 4-10 hours, depending on how long it takes to get the heart beating. But Trenton’s surgery was only 3.5 hours because the heart started pumping right away. We learned that the heart didn’t need to be airlifted from anywhere, which helped.
Through a series of fortunate coincidences, I found out who the donor baby was, and I went to the funeral to pay my respects, which was challenging for many reasons but I’m glad I did it. A year later we met the donor family through the Southwest Transplant Alliance, and we found out there were numerous similarities between our two families. We bonded over all of the commonalities, and later the father told me that it was the first time he’d seen his wife smile since the loss of their child.

Trenton survived more in his first year of life than most people do in a lifetime, but it’s just the beginning of his story. Tell us more about some of the health complications he’s lived with.
Trenton had to be on significant medication for the heart transplant since his first birthday, and he goes through the regular check-ups, including full days of testing, but it’s just regular life for us. It didn’t feel like a burden, it’s just what life was. However, when you’re on some of these medications there is the possibility of severe side effects. In our case, the meds caused cancer during Trenton’s senior year of high school. The most remarkable thing was his attitude, he never complained, he just acknowledged that he’d already been through a heart transplant. And despite the cancer, he still graduated on time!
From there Trenton went off to college, where he pursued a computer science degree. At the beginning of his sophomore year, during a check-up August 2013, we found out that he might be starting to reject the heart. It was slight enough that I didn’t worry, but Valerie certainly did. At his semi-annual check-up in March, they did a heart catheterization, and found out he was definitely starting to reject. One of the major signs is a narrowing of the arteries, and he needed a stent.
Trenton finished his semester and on May 21, 2014, a friend of Trent’s called to let us know he’d gotten dizzy, fallen and was bleeding from the mouth. He was rushed to the hospital, and when we got there he was joking around and seemed fine. The doctors decided to keep him overnight, they did another heart cath, and found out they needed to put three more stents in. By now the rejection was accelerating, but you have to be five years cancer-free to be on the transplant list. Nonetheless they started looking around the country to find someone who would do the surgery.
Moments after Trent was delivered from the procedure back to his room, a cardiologist and a chaplain came to us in the waiting room and said “Trenton has stopped breathing and his heart stopped beating. We’re doing chest compressions to bring him back, but we don’t know if we can bring him back.” Somebody was on top of his bed compressing on his chest, just like a TV show. We were waiting alone in a separate room, wondering if we’d just lost our son and trying to process what was happening. But I told Valerie, ‘They haven’t told us he’s gone yet, and until they do I have to have some hope he’s going to survive.’ Not long after the doctors let us know he’d been revived.

Trenton in the hospital during his second significant heart event.

At this point, how did Trenton feel knowing he was going to have to undergo a second heart transplant, assuming they could find someone to do the surgery?
His main concern was making sure it was done during summer break so he wouldn’t miss school! But at that point we still didn’t know if there was a hospital willing to perform the surgery. And sure enough Baylor called and told us, “There are no guarantees, but we’ll test him and be aggressive about it if we can operate.” It took a few days to test him, and once he got out of sedation on Friday the cardiologist let us know he’s going to be listed. As he was now an adult, Trenton listed himself at 6:00pm on that Friday night. Valerie stayed with him in the hospital and just nine hours later she called me and said “We got a heart, he’s going back into surgery.” He got through surgery just fine, and even though recovery was up and down, he got out June 17. Which meant he didn’t need to miss any school. And all the while, his attitude never faltered.

What is Trenton’s life like today?
He just graduated college, and is starting to interview for jobs. Has a great girlfriend and is living life. Today (May 21) is the three-year anniversary of Trent’s heart attack. People ask us, “How can you get through that?” But the truth is anyone can get through it, we’re not anything special. You do what you have to do to get through it. Friends and family carried us through it. The second time we were a lot more experienced, but it still didn’t make it any easier.

Tell us about the inspiration and purpose behind Still Thankful.
I started a blog to inspire people, connect with others who have shared experiences. How it’s changed them, how friends have helped them. In spite of life’s challenges, and maybe because of them, I’ve become more thankful. I feel other’s pain, and I’m thankful that I can, thankful that I can empathize with them.
Still Thankful exists to support parents who have lost a child, or have a child who has experienced a serious illness.  We hope to inspire and encourage parents who feel overwhelmed and struggle to cope with feelings of “why me” or “it’s not fair.”  Over time, we hope to add resources for support, connection, administration and education, and we would welcome your input and participation.

If you’d like to visit Still Thankful and learn more about the Cary family’s journey, click here. You can also watch a video about Trenton’s experience below.