This road is not for the weak. A VCU students path to getting a new heart – Richmond.com

Juan Jones was a sophomore at New Kent High School when he was told a heart transplant was the only thing that would save his life. Photo was taken at Historic Jasmine Plantation.

His son's life was at stake when Woody Jones sat down at a long wooden conference table inside the University of Virginia Children's Hospital. It was Christmas Day 2017, and Woody had come with his oldest son, Juan, in hopes of fixing Juan's failing heart.

Juan (pronounced Ju-Wan), was a sophomore at New Kent High School. He had enduredfatigue, diminished strength and a rapid heart rate for more than a month. An X-ray revealed that his heart had enlarged well past its normal size, a condition known as cardiomyopathy. His ventricles swelled, his muscle wall weakened, and his heart struggled to deliver blood to the rest of his body.

Doctors at another hospital on the other side of the state had tried for weeks to shrink the heart using medicine. Their attempts had all failed.

Seated across from Woody were the health care providers trying to save Juan's life. One pediatric cardiologist looked at Woody and delivered a jarring message.

If Juan didnt receive a heart transplant, he would die. How long Juan had to live, they did not know. How long he would wait for a transplant, it was impossible to estimate.

Woody was in a state of shock. He tried to remember his faith in God. His mind raced back to Nicole, Juans mother, who had died 11 years earlier from Lupus. Now, he was on the verge of losing a second family member. He offered to give the doctors his own heart but was told he was an unsuitable match. He was too old.

Afraid every moment could be the last, Woody got out his phone and started filming interactions with his son. He filmed Juan seated in his hospital bed, smiling while a woman combed his hair. He filmed Juan unconscious with tubes emerging from his chest.

The scenes Woody captured were the most difficult moments of his son's young life.

When he was a sophomore at New Kent, Juan was one of the strongest players on the football team. Coaches promoted him to varsity, and by mid-season he was starting. Though he weighed 190 pounds, he played nose guard on the defensive line, battling against offensive linemen 100 pounds heavier than him.

In the winters, he grappled for New Kents wrestling team, one of the top programs in the state. Juan dropped a few pounds that fall and competed in the 182-pound weight class.

That November, he started losing sleep. He would wake up sweating, his pulse racing. His body started to swell. Maybe all that lifting at the gym paid off, he thought at first.

He experienced fits of coughing, which got worse, louder and harder over time. When he woke up in the morning, for a moment he couldnt feel his legs. But he never missed school or football practice. He figured maybe he had a bad cold.

After six weeks of discomfort, Juan told his dad and saw a doctor in Newport News. The doctor diagnosed Juan with pneumonia and sent him home with an antibiotic. After a few days, things had only gotten worse. Juans skin developed a yellowish hue.

Woody had never seen his son like this before. So he turned to an emergency medicine physician he knew, Dr. Paul Cash. Woody works as an administration associate at Sentara Williamsburg Regional Medical Center, where he checks in patients and reviews their health history. Cash told Woody to bring in his son.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones, a freshman at Virginia Commonwealth University, received a heart transplant three years ago when he was a sophomore at New Kent High School. He says his faith has played a major role in the journey.

Juan Jones was a sophomore at New Kent High School when he was told a heart transplant was the only thing that would save his life. Photo was taken at Historic Jasmine Plantation.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones has never met the family of his donor. He wants to tell them thank you.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Woody Jones and son Juan stood by a medevac helicopter on Saturday. Three years ago, Juan was flown from Norfolk to the University of Virginia Childrens Hospital, where he received a heart transplant. BELOW: Juan visits the grave of his mother, Nicole Mickel, who died of lupus when he was 4.

Woodrow Woody Jones and his son Juan Jones stand by a medevac helicopter Saturday, Feb. 20, 2021. Three years ago, Juan was medevaced to the University of Virginia Hospital where he received a heart transplant.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones, a freshman at Virginia Commonwealth University, received a heart transplant three years ago when he was a sophomore at New Kent High School. He says his faith has played a major role in the journey.

Juan Jones was a sophomore at New Kent High School when he was told a heart transplant was the only thing that would save his life. Photo was taken at Historic Jasmine Plantation.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Juan Jones has never met the family of his donor. He wants to tell them thank you.

Juan Jones, a freshman at VCU, had a heart transplant while a sophomore at New Kent High School. His faith has played a major part in his life. Photo was taken at Historic Jasmine Plantation Fri., Jan. 29, 2021.

Woody Jones and son Juan stood by a medevac helicopter on Saturday. Three years ago, Juan was flown from Norfolk to the University of Virginia Childrens Hospital, where he received a heart transplant. BELOW: Juan visits the grave of his mother, Nicole Mickel, who died of lupus when he was 4.

Woodrow Woody Jones and his son Juan Jones stand by a medevac helicopter Saturday, Feb. 20, 2021. Three years ago, Juan was medevaced to the University of Virginia Hospital where he received a heart transplant.

With Woodys car in the shop, a neighbor drove Juan to the emergency room, where his pulse was checked and an X-ray was taken. His heart raced, almost 200 beats per minute. The X-ray revealed Juans heart had grown dangerously large. A normal-sized heart is about as large as a persons fist. But Juans was the size of a melon. Years later, Juan put his hands out and extended his fingers as if he was gripping a ball with both hands to show how enlarged the organ had become. It was unmistakable.

Cash called Woody. But he didnt explain the details of Juans illness, saying only, You need to come now.

Back at the hospital, Cash explained the diagnosis, and Woody broke the news to his son. Juan stayed calm, the new information not really hitting him yet. He figured everything would be fine.

Doctors eventually learned that a virus caused Juans cardiomyopathy, Woody said. Though a rare affliction, a routine germ can lodge itself in the heart and cause it to malfunction. Its similar to how COVID-19 has been known to invade some patients hearts. If COVID develops in a patients heart, it can cause the organ to inflame, a condition known as myocarditis.

Juan later was transferred to Childrens Hospital of the Kings Daughters in Norfolk, riding there in an ambulance. When he arrived, his coughing became more severe and his condition worsened. Woody said later that Juan's heart was giving out.

Woody grew up in New Orleans but moved to Virginia in 2001. He got a job at a call center for MCI, a precursor to Verizon, making and receiving calls. Thats where he met Nicole Mickel. She liked bowling and ice skating and dining out at restaurants.

The two made plans to marry, and Juan was born later that year. Juan remembers sneaking down stairs to the kitchen late at nights to make dessert. Once, Juan and Nicole watched a scary movie with sharks on television, maybe Jaws, Juan remembers. Nicole jumped out from behind the door to scare her son.

Juan visits the grave of his mother, Nicole Mickel, who died of lupus when he was 4.

Nicole was diagnosed with lupus, an autoimmune disease that can cause organ inflammation or skin irritation. Four years after Juan was born, Nicole became ill. In the emergency room, Woody promised her he would take care of Juan. Nicole said she had no doubt of that. She died soon after.

Woody played both parts, as a father and a mother. He always tried to be strong for Juan, and he told his son to keep God on your side and that one day he would see his mother again.

Juan took hold of his dads Christian faith, and he grew up with an even keel personality. When given bad news about his heart, his emotions never got out of control.

Not wanting attention, he didnt tell his friends, teachers or coaches what had happened. They found out anyway. Enrolled in honors classes, Juan kept up with his homework. From his hospital bed, he studied the parts of the heart for his biology class.

Doctors at the childrens hospital had administered antibiotics, hoping to cure the virus and allow his heart to shrink back to normal size. After weeks of no improvement, Juan was transferred again, this time to UVAs childrens hospital, which is known for its pediatric cardiology department. Juan rode there in a helicopter.

Woody Jones and son Juan stood by a medevac helicopter on Saturday. Three years ago, Juan was flown from Norfolk to the University of Virginia Childrens Hospital, where he received a heart transplant. BELOW: Juan visits the grave of his mother, Nicole Mickel, who died of lupus when he was 4.

Christmas was spent in a hospital bed. Greeting cards arrived from school. Ms. Christian, the mother of one of Juans friends, sent a stuffed animal frog hobbling on crutches. Friends came to visit and crowded around his bed. One day, surrounded by the joy of his friends, Juan started to laugh so hard his pulse quickened, which set off an alarm. A nurse rushed into the room to see what was the matter.

After the doctors had told Woody about the need for a transplant, they came to Juans room to tell him. Juan remembers hearing a lot of gibberish. The next words they said are seared into his memory. He would need a heart transplant soon, they said. They gave no indication how soon one could arrive. As he had before, Juan remained calm.

Thats a major thing, but it didnt bother me, he said. I wasnt freaking out or anything like that.

Four days later, Juan underwent a procedure to have a Left Ventricular Assist Device, known as an LVAD, plugged into his heart. Implanted into his chest, the LVAD helped his weakened heart pump blood through his body. Doctors made incisions to his chest and stomach. Juan wore a control unit and battery pack around to his waist. He had to clean it every evening.

The worst part was the noise. The LVAD made a whirring sound that kept him up at night. It was prolonging his life, but he still grew to hate it.

He thought about death sometimes. The idea that he would see his mother again made the prospect of dying not so scary.

By mid-January, his doctors decided to send Juan home to await his transplant. Could he resume his normal life? he asked. Could he run? Could he play 7-on-7 football? Yes, the doctor said, but it would be much harder for him.

Only a few hours later, Juans course changed. That evening, dozens of doctors, nurses and staff came to his room, some holding camera phones. You know how youve been waiting for a heart? one provider asked. He then put two thumbs up.

For the first time, Juans emotions carried him away, and he began to cry.

I was shocked, honestly, Juan said. I didnt think I was going to get a heart so soon.

Other children awaiting transplants had waited longer. But the donor must be a suitable match. Juan needed someone with identical O-negative blood, similar age and body size to die with his heart intact in order for Juan to receive a transplant. A young man who passed away in Tennessee fit the description.

The night before the surgery, Juan prayed with his dad, his brother, Jeremiah, and his sister, Kristina. They asked God to give doctors the knowledge, strength and precision to deliver Juan safely through the 16-hour operation. There were many sleepless nights at UVA, but the night before the surgery, the LVAD didnt keep Juan awake.

Juan said goodbye to his family and the staff as they rolled him into the operating room. The anesthesia was readied, and Juan was asked to count down from 10.

Then everything went black.

Juan Jones in his hotel bed after surgery.

Doctors kept Juan asleep for three days. He had developed plastic bronchitis, where fluid built up in his lungs and hardened, restricting his airway. He needed time to heal.

When he awoke, his new heart was beating and his lungs were breathing. His body had accepted its gift. The next three months were spent at UVA, as Juan relearned the basic tasks of moving his body. It was a struggle to stand up and walk. A few months earlier, he had been playing football. Now he labored to maintain his balance while standing. It took weeks before he could easily walk.

He passed one test with flying colors eating.

Recovery was a journey of ups and downs. He made progress for a week, only to contract a cold virus, which knocked him back into his bed for several days.

In May, six months after he visited the Sentara emergency room, he returned to his classes. That summer, in 2018, he returned to the football for his junior season. But the next two seasons didnt meet his expectations. His stamina was far from where he hoped. Running across the field and tackling the running back took more out of him than ever before.

He played some and started a few games, but coaches took a risk-averse approach to playing him, he said. He played on and off during his junior and senior seasons.

He enrolled at Virginia Commonwealth University in 2020 and registered as a biomedical engineering major. Thanks to three scholarships he earned, he doesnt pay for tuition. One day, he hopes to invent technology that helps the human body. Maybe hell design an LVAD that doesnt keep patients awake at night.

Because of the medicine he takes that helps his body accept his new heart, Juan is immunocompromised. If he were to contract COVID-19, his body would be less prepared than most to fight off the virus. So Juan, now 19, takes all his classes online, leaving the house only for haircuts, food and exercise at the YMCA. He continues to live at home in New Kent with his dad and siblings. He has visited VCUs campus just once.

The urge to play football is still inside him. His muscles have regenerated, though he needs to slim down and get faster. He has considered transferring to a school that would give him a shot as a linebacker.

The day he went to the hospital, back in the fall of 2017, was the day before a big wrestling meet. Juan was scheduled to oppose a big-name wrestler, though he doesnt remember the kids name anymore. Juan never made it to the meet.

Thats a good thing, a doctor later told him. Had he wrestled that day with his heart in such dire condition, he could have died.

Juan Jones has never met the family of his donor. He wants to tell them thank you.

When he was a patient at UVA, one day a nurse asked, If you could meet anyone in the world, who would you want to meet? Juan answered Elon Musk. Juan has long been interested in rockets and astronomy. Little did he know, the Make-A-Wish Foundation asked the worlds wealthiest man if he would meet Juan.

In the fall of 2018, less than a year after he received his new heart, Woody got a call from Musks office. The woman on the phone invited Juan and Woody to fly to Los Angeles and meet Musk at SpaceX headquarters. Juan said of course, even though it meant missing an important football game against Smithfield.

After security confiscated their phones, Juan and Woody took a tour of the facility, seeing where rockets are conceived. They spent a day with Musk, who autographed a t-shirt and gave Juan a carbon fiber skateboard made from the body of a rocket.

Musk also wanted to give Juan a flamethrower, which were sold for $500 by Musks other venture, the Boring Company. But such a gift was problematic, they determined, and there were no flamethrowers left in inventory.

Juan asked Musk lots of questions and continually made notes on his phone, including the query, Whats the most valuable lesson you learned? Musk paused for a second and gave his answer: character. The people you meet in life will show you a side of themselves while hiding a completely different side, he said. Who a person truly is, thats what matters.

Losing his heart and gaining another made Juan a better person, he said. There are actions he used to take that he has erased from his life, though he wont explain in detail. Too many people are drifting away from God, he said. Theres too much lying, too much adultery, too much revenge. When he gained a new heart, he gained a new appreciation for God.

Id be completely different, he said, if he didnt focus on his religion. Juan is still in search of a small church community that would be a good fit for him.

The cost of Juans medical procedures grew into millions of dollars, Woody said. Insurance and UVA helped defer costs, but Woody was left with a bill that cost tens of thousands of dollars, some of which he is still paying. A GoFundMe raised nearly $8,000, and a documentary about Juan's experience will bring in more. Woody doesnt let the idea of paying bills burden him, and he tries not to think about financial costs. There's no price he wouldn't have paid for his son's life.

Before Juans heart arrived, Woody feared he would lose his son, so he took out his phone and started filming. He filmed Juan lying in his bed, pushed around in a wheelchair and encouraging other young patients.

Because of their journey, Juan and Woody got closer. Even though theyre stuck in the same townhouse throughout lockdown, Woody doesnt get on Juans nerves the way he used to.

After surgery, Woody filmed Juan limping through physical therapy. Eventually, Woody decided he wanted to give his sons story to the public. Woody wanted everyone to see what God had done for his son, and maybe it would uplift other people going through something terrible.

So people can understand God is still with us, Woody said.

Woody connected with Liam Thurkettle, a local filmmaker, who started following Juan in 2019. Thurkettle interviewed doctors and New Kents principal. Woodys visceral images fill the one hour, 20-minute film, which was released Friday and can be purchased for $12.99 at JuanStrong.com. A portion of the proceeds will go toward the Lupus Foundation and the UVAs childrens hospital.

"This road is not for the weak," Juan said. "If I didn't have my eyes set on God, I don't know where I'd be."

Throughout it all, Juan never forgot the fact that another young man died so he could live. Juan knows only a little about him. He was close to Juans age, and he lived in Tennessee. He hasnt met the young mans family, but he wants to.

Woody envisions the two families connecting on a national television show. It would be such a touching moment, its the kind of thing the world should see, said Thurkettle.

This week, the two families will speak over conference call on WAVY, a Norfolk-based NBC affiliate.

At times, Juan feels a touch of guilt that he gets to live while another familys son has died. But he also believes God has a plan.

Everybody has a purpose in life for something, Juan said. God is the only one who knows what hes doing. He knows what to do and what not to do.

When he meets the family of his donor, Juan intends to say thank you. He wants to tell them that he wouldnt be on this earth without them and that their son is literally a part of him.

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This road is not for the weak. A VCU students path to getting a new heart - Richmond.com