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This transplant recipient and med student has a heart for patients

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Jon Hochstein mostly remembers the good times, like when he proposed to his favorite nurse with a Spider-Man ring. Or when Santa Claus visited the festively decorated hospital at Christmastime. Or when one of the nurses gave him a squirt gun, pushed him around the halls in a wheelchair and encouraged him to shoot all the medical professionals who regularly drew his blood. To the little boy’s delight, they all dramatically clutched the wounds he inflicted and fell to the floor, or in one case, pretended to fall out the window.

But his parents Barb and David remember the whole ordeal: the months they spent in the hospital as their son’s heart was failing, hearing that their 4-year-old probably wouldn’t live through the night and then learning doctors had found a heart for Jon that just might work. The transplant that saved Jon’s life changed all their lives. The happy memories Jon made waiting for a heart inspired him to study medicine. Complications from the transplant led him to have major back-to-back illnesses in elementary school. And it forever linked them with the family of the boy whose heart beats in Jon’s chest.

Receiving

Barb didn’t think anything of it when her 3-year-old son complained about going up the stairs or when they had to carry him trick-or-treating on Halloween. But when he got sick and the flu-like symptoms persisted, she asked the doctors to run a few tests. Eventually, he was diagnosed with idiopathic dilated cardiomyopathy  — “(basically), the heart gets big and fails,” explained Jon. They checked him into the hospital and put him on the transplant list.

Barb, David, and all their friends and family began to pray. “It was a very tough time because you’re not praying for anybody else to have a tragedy, but you’re just praying that if they have a tragedy, that they would be open to donating their loved one’s organs,” said Barb. “It was just surrendering and trusting (that what) God wanted for Jon and for us… he would journey us through it.”

As Jon took a turn for the worse, his parents learned there was a heart for him. The donor was an 8-year-old boy who was hit by a car as he walked home from school. Doctors worried the heart would be too large, but Jon was dying and they were out of options. In surgery, the boy’s heart slipped into the enlarged cavity made by Jon’s ballooned heart. It started beating right away, said Barb.

Shortly after the transplant, the family moved from Utah to Ashburn. Barb and David enrolled Jon and his younger brother, Mike, in St. Theresa School. Jon’s health was stable until the fourth grade — he stopped gaining weight, felt fatigued and then spiked a fever of 105 degrees.

Jon explained the journey to his diagnosis with the expertise of a medical student combined with someone who lived through it. “The expert in post-transplant lymphoproliferative disorder, which is sort of like the pre-cancer syndrome that transplant patients sometimes get, was in Pittsburgh. So we went there and we got a diagnosis of Hodgkin’s lymphoma,” said Jon. “Honestly (why transplant patients get cancer) is not well understood. How I explain it to people is, you mess with the immune system, it gets a little cranky and sometimes cancer happens.”

Once again, his youth saved him from understanding the gravity of the situation. “I’m 9 at this time, so when my parents told me I had cancer, it was one of those, ‘Oh I thought this was for old people. OK, cool, what do we have to do?’ ” he said. For the next six months, Jon received chemotherapy and other treatment. He lost his hair, so his brother shaved his head in solidarity. Friends called and visited, and his class made him a book of all their favorite memories of him. His principal brought him cookies.

“The St. Theresa community was so supportive and helpful, financially and with dinners and all kinds of things,” said Barb. “It was unbelievable.” But a few months later, his body began to reject his heart. For two months, they were in and out of the hospital, and Barb and David turned once again to God. “Without having faith, you can’t get through something like this,” said David. He more deeply understood that children are a gift from God, and that God can take them home at any time. “You know your children are basically borrowed,” he said. “You don’t own them and you don’t know how long the lease is for.”

Eventually, doctors were able to get Jon stabilized and on new medication. It’s worked ever since.

Giving

As Jon grew up, his parents encouraged him to be grateful for his life, even when going through bouts of grave illness. “My parents really tried to frame the transplant in this positive light, that God had given me, through this donor, a second chance at life and that I was meant to live that life, not to live in a bubble,” said Jon. “That’s still really internalized in my mind.”

After graduating from St. Theresa, he attended Broad Run High School in Ashburn and then earned a degree in biomedical engineering from Johns Hopkins University in Baltimore in 2017.

The 24-year-old is now in his second year at Harvard Medical School. He hopes to specialize in something he already has a bit of experience with — pediatric transplantation. “The door is still open as to whether I want to do surgery or longitudinal care,” he said. “(As to which organ I’ll specialize in), I’m trying to be open, but I like hearts a lot.”

As with every doctor, Jon wants to heal his patients. But he also looks forward to accompanying them through their illness. “It’s a dream to be able to share how transplantation has worked for me with a family who’s likely scared about what their kid is going to go through. I think I’m blessed to have my patient experience,” he said. “I'm very excited to have the opportunity to give back because (being a transplant recipient) has been and still is such a big part of my life.”

The medical miracle that made Jon’s life possible became even more tangible he finally met the people he’s only imagined for the past 20 years — the family of his donor, Christopher. A few weeks ago, the Hochsteins traveled to upstate New York to meet Christopher’s sister and mother, to hear stories about him and the details of the accident that took his life.

Jon gave Christopher’s mother the gold medal he won at the World Transplant Games. He received her blessing to name his firstborn son Christopher. Then, the family leaned in close to Jon and heard the thump-thump-thump of Christopher’s heartbeat.

It was an emotional moment for everyone. “It's bizarre to even comprehend a child dying but then to hear their dead child’s heart still alive, animating this other human being is an out-of-this-world experience,” said Jon.

 “Now that I have had the chance to meet the donor family, I see that it could’ve been their kid, it could’ve been the reverse situation. Why me?” he said. This side of heaven, Jon and his family won’t know. But until he finds out, Jon intends to hold Christopher’s gift, his doctors’ efforts and God’s mercy at the forefront of his mind and deep within his heart.

“That relationship with God has helped me start to ask these questions in my life and helped me see how I want to be as a doctor and as a man and hopefully as a husband and father.”

© Arlington Catholic Herald 2020

@ZoeyMaraistACH