A new heart, new start for Jacob

At 2:30 a.m. March 21, the Luchsinger family got the call they'd been waiting for.

"It's time," Paula Luchsinger told her son Jacob as she woke him from his sleep.

Jacob, a 17-year-old junior at Tartan High School, knew exactly what it was time for: a new heart.

At just three weeks old, Jacob was diagnosed with tricuspid atresia, a serious condition in which the tricuspid heart valve is completely missing.

"It's a very rare congenital heart defect," said Rebecca Ameduri, medical director of the Heart Failure and Transplant Program at the University of Minnesota Amplatz Children's Hospital.

Jacob underwent his first major heart surgery when he was just 7 weeks old, and a second when he reached 15 months.

The paired surgeries -- common practice for this uncommon problem -- use shunts to reroute the oxygen-rich and oxygen-depleted blood in the heart to their correct destinations. Babies born with tricuspid atresia can appear blue, because their hearts aren't getting enough blood flow to their lungs and they aren't getting the oxygen they need. They may still appear listless and blue until after the second surgery.

Even with such challenges so early, Jacob led what he now describes as a relatively normal life for nearly 15 years. As a young child, Jacob enjoyed sports, but couldn't play most of them because his oxygen saturation level hovered around just 85 percent.

"I've always liked sports, but I just accepted it," Jacob said.

Nonetheless, Jacob found multiple activities he could do for fun while growing up in Oakdale: golf, Frisbee golf and bowling are some of his favorites.

And though Jacob had already had to make some sacrifices due to his condition, his life changed even more drastically in late 2010 when his health began to deteriorate further.

Losing the rhythm

When Jacob was 16, he experienced a bout of atrial fibrillation so severe his heart had to be shocked and restarted. About one year later in November of 2011 it happened again, and it was clear his heart could no longer keep its own rhythm.

Over the next few months Jacob was hospitalized for 21 days and had to be cardioverted eight more times. In the "cardiovert" procedures, his heart was still beating, but needed to be brought back into rhythm with electrical impulses.

Jacob was taken in for open heart surgery just after the Christmas holiday in December.

As Jacob's parents waited for what they expected would be a lengthy, grueling surgery to finish, surgeons came back out to talk to them frighteningly early. They'd found once they opened Jacob's chest cavity his heart was too enlarged to withstand surgery or to carry him much longer. It was now clear he'd need a heart transplant to save his life.

What had been a lingering concern now hit the Luchsingers like a body blow.

"We'd always 'grown up' with that thought," Paula said of Jacob's difficult journey with his own heart. "But it was devastating when they couldn't fix it in December."

Jacob was put on the national transplant waiting list in February, classified as "Status 1A," the highest priority level for patients who need a new heart, Ameduri noted.

In March, the Luchsingers got the call they'd hoped for -- and dreaded. A heart was available for Jacob.

As welcome as the 2:30 a.m. call was, Paula said it was a bittersweet relief to hear a heart was available. Though Jacob was a huge step closer to resuming his life, she knew that somewhere, a family was mourning the loss of a loved one.

"It's kid of hard to celebrate when you know it's someone else's suffering," Paula said.

'They almost lost him'

After the Luchsingers got the call they rushed to the University of Minnesota Amplatz Children's Hospital and waited for Jacob to be taken into surgery.

The surgery, which Jacob's parents initially were told would last 10 to 12 hours, stretched to an agonizing 21 hours as surgeons repeatedly struggled to keep Jacob alive.

As the surgical team worked on Jacob's heart, his aorta -- the vessel leading blood out of the heart -- began to tear from the inside out, and blood rushed into the surrounding tissue. Jacob was suddenly losing blood profusely, as surgeons tackled what is in itself a life-threatening condition so they could return to the original challenge of transplanting a heart.

As complications developed, Jacob's parents received updates from the doctors and nurses -- not all of which were pleasant to hear.

"They basically had no guarantees at that point," Paula said. "They almost lost him a couple times because he was bleeding to death."

Despite the difficulties, doctors were eventually able to place and attach the new heart, and after 23 long hours, Paula and Jacob's father Marv were finally allowed so see their son again.

"That was the longest day of my life," Marv said.

"It is truly a miracle that they were able to get accomplished what they did," Paula added.

After spending two weeks in the hospital, Jacob was allowed to go home, and despite some lasting effects of the surgery he finally appears to be on the road to recovery. An emergency bypass done during surgery to help stem Jacob's severe bleeding caused nerve damage and left him partially paralyzed on his right side, but he is now beginning to regain movement.

He must also take about 50 pills each day to alleviate the nerve damage and to suppress his immune system so his body won't reject the transplanted heart.

"I think he's doing phenomenally well with his new heart," said Ameduri, adding that the average heart transplant lasts about 11 years and that Jacob may need another transplant in the future.

An outpouring of support

Throughout his ordeal, Jacob said he has received an abundance of good wishes from family, friends and even people he has never met in the community.

John Stiles, a pastor at Holy Cross Lutheran Church, where the Luchsingers are members, said the congregation has long been praying for Jacob's recovery. Michael Dobbins, a former pastor at Holy Cross, met the family at the hospital early on the morning of Jacob's surgery.

Though Dobbins noted the surgery and few days after were a "harrowing" experience, he said he believes the family's strong support for each other and trust in God helped pull them through.

"They're a real close-knit family," Dobbins said. 'They stand by each other; they have strong faith. That helps."

Dobbins added that Jacob's upbeat attitude and spirited sense of humor have likely helped him overcome such difficult circumstances. Jacob was even cracking jokes with the nurses right before they wheeled him into surgery, Dobbins said with a chuckle.

"He's a real inspiration to others."

Looking to the future

Though Jacob has missed many days of school this year, Tartan Principal John Bezek said the school will be sending out a "homebound" teacher to help him get caught up when he's feeling up to it. Jacob adds that he still hopes to graduate next year, as he'd planned.

"That's our goal too," Bezek said. "We want to see him walk across the stage with the rest of his class."

Bezek added that he admires Jacob's tenacity and desire to stay on track with his learning.

"A lot of kids take for granted their health and their ability to come to school," Bezek said. Situations like Jacob's help "put that into perspective."

Jacob says after high school, he plans to attend a junior college and simply "get life back on track." 

Paula said though she couldn't be more grateful for her son's new heart, she constantly thinks about the donor's family and the pain they must be facing. The Luchsingers don't know anything about Jacob's heart donor, but they can write a letter to the donor's family, which will be delivered through the transplant program.

The Luchsingers say that in that letter, they will thank the donor's family for what their loved one has given Jacob.

"We feel sorry for their loss and appreciate their gift," Marv said.

Jacob himself puts it most succinctly: "I wouldn't be here without it."

Alex Holmquist can be reached at aholmquist@lillienews.com or 651-748-7822.

Comment Here