ANN ARBOR, MI - Stan Larkin is looking forward to his upcoming trip to Michigan's Adventure for his daughter's birthday. He's looking forward to taking a shower. He's looking forward to getting back on the basketball court.
Most of all, he's looking forward to being able to hold his three children again.
"They're going to attack me," he joked. "They can't wait. They're going to be on the front, the back, my neck. They're going to be jumping all over me."
He's looking forward to doing all of those things when he leaves the University of Michigan Hospital in a few days - this time with a real human heart.
The 25-year-old Larkin, of Ypsilanti, had been carrying a 13.5-pound Freedom portable driver in a backpack with him 24 hours a day, seven days a week for the past 16 months.
The backpack - a Total Artificial Heart and driver that pumps blood -- is what kept him alive for 555 days until receiving a heart transplant on May 9.
Stan received his pneumatic Total Artificial Heart on Nov. 7, 2014, making history as U-M Hospital's first Total Artificial Heart patient to be discharged using the device. Doctors at U-M also said he was the first patient in the Midwest to be discharged on the Freedom driver.
It is the same device his younger brother, Domonique, depended on to survive after being diagnosed with the inherited heart condition arrhythmogenic right ventricular dysplasia, or ARVD.
More than a year and a half after walking out of U-M Hospital without a heart, Stan will leave the same hospital with a real one all his own.
"It's really just getting back to an old feeling - the backpack was the new feeling," he said.
"I'm ready to go to Michigan's Adventure to celebrate my daughter's birthday in July," he added. "I think I'm going to have more fun than she is."
Related: Brothers without hearts: Man makes history at U-M Hospital as first patient discharged with Total Artificial Heart
After 2 months without a heart, Ypsilanti man gets transplant while brother awaits his
His story has captivated people across the globe since it was originally published by The Ann Arbor News a year and a half ago.
On May 26, Stan reunited with his cardiac surgeon Dr. Jonathan Haft to speek at U-M's Frankel Cardiovascular Center Danto Auditorium, to provide an update on his progress, along with U-M Center for Circulatory Support medical director Dr. Keith Aaronson and U-M Transplant Program chief of transplant surgery Dr. John Magee. The afternoon was filled with plenty of well-earned laughs for Stan and all of his family, after a long road of uncertainty.
Heart problems
During a game of basketball more than nine years ago, when he was just 16, Stan suddenly blacked out and collapsed. It was the first fainting spell he ever experienced, but it was enough for doctors to run a series of tests on his heart.
He was diagnosed with ARVD, a disease that causes irregular heart rhythms and one doctors at Johns Hopkins Medicine say is a leading cause of sudden death among young athletes.
After it was discovered that Stan had ARVD in 2007, doctors urged everyone in his immediate family to get tested for the disease. Because the condition is hereditary, doctors believed that one of Stan's siblings or parents could also be a carrier of the trait and it would only be a matter of time before that person would also need medical attention.
Voncile McCrae, center, laughs with her sons Dominique and Stan Larkin following a talk at the Michigan Frankel Cardiovascular Center on Thursday, May 26, 2016. Both Larkin brothers were born with a form of cardiomyopathy and have both received heart transplants. Melanie Maxwell | The Ann Arbor News
Domonique Larkin - younger than Stan by just 358 days - also was diagnosed with ARVD just weeks after Stan's diagnosis, and he also had to get a defibrillator implanted.
More than a year after his own heart transplant, Domonique is looking forward to continuing the unique bond he shared with his brother without the restrictions they've had being while hooked up to the Freedom portable driver, or as they refer to it, "the backpack."
"That's what I've been waiting on, was him," Domonique said. "It's just about having freedom and being able to move without worrying. Not just the freedom of having people always around you, but being able to move around."
Doctors didn't know how strong Stan's heart was back then, so they gave him a defibrillator, which would administer electric shocks to his heart to correct the abnormal beating.
In April 2012, things began to go downhill. Stan's body began retaining fluids at an alarming rate, and doctors said he would eventually need a heart transplant in order to live.
His ARVD had progressed into bi-ventricular dysplasia, meaning that neither of his heart's two large chambers that collect and pump blood to his lungs and body weren't functioning properly.
Having one of the most common blood types, O-positive, Stan was behind hundreds of people on the donor list for a new heart. Doctors sought out a temporary option for Stan and chose to outfit him with a Total Artificial Heart.
Artificial heartbeats
Stan was admitted to the University of Michigan Hospital on Oct. 11, 2014, so doctors could run a series of physiological tests to make sure he was qualified as a candidate for the Total Artificial Heart.
Doctors discovered that Stan's heart was too weak to properly function inside of his body. Less than a month later, he received his pneumatic Total Artificial Heart. Haft said that this particular device was the best way to provide support for someone like Stan who has severe failure in both sides of the heart, with the goal of bridging the patient to heart transplantation.
Domonique Larkin, left, jokes around with his brother Stan check as they sit together before they speak at the Michigan Frankel Cardiovascular Center on Thursday, May 26, 2016. Both Larkin brothers were born with a form of cardiomyopathy and have both received heart transplants. Melanie Maxwell | The Ann Arbor News
"They were both very, very ill when we first met them in our intensive care units," Haft said. "We wanted to get them heart transplants, but we didn't think we had enough time. There's just something about their unique anatomic situation where other technology wasn't going to work."
Like his older brother, Domonique's heart began to weaken over time, and he also had to get a Total Artificial Heart on Dec. 11, 2014.
With the Total Artificial Heart, there are two tubes that exit the body, and those two tubes have to be connected to a machine that can deliver compressed air into the ventricles to to pump blood through the body. The compressor is powered by an electronic system, which controls the movement of air in and out through those tubes into the device.
In Stan's case, his tubes were connected to a compressor called Big Blue: a 418-pound machine with very limited mobility.
Stan was discharged from U-M Hospital on Dec. 23, 2014, after doctors approved him for the Freedom portable driver. The device performed the same functions as Big Blue, with the exception of its portability. The Freedom driver was approved by the FDA earlier that year, making Stan one of its first successful users in the Midwest.
The Freedom driver works with the Total Artificial Heart by using a portable power source that comes with two on-board batteries, which are backed up by an internal backup source. In addition to the Freedom driver, Stan also utilized two back-up drivers and six batteries in case of a malfunction.
While the brothers awaited their transplants, the Freedom driver provided them with virtually unlimited mobility, with the exception of a few limitations.
Haft said Stan made good use of the Freedom driver, although his active lifestyle often tested the limits of the device.
"He just really thrived on the device," Haft said. "I think the Freedom driver had to be exchanged about 10 times when he was at home because this thing wasn't built for pickup basketball. He really pushed the envelope."
Domonique followed the same path as his big brother, first having his heart removed and using Big Blue to stay alive from December to January 2015, then switching to a smaller version of Big Blue called the Companion 2 on Jan. 2.
Ultimately, Domonique was switched over to the Total Artificial Heart and the Freedom driver on Jan. 18, 2015, before receiving his heart transplant on Jan. 22, 2015.
Sixteen months later, his brother ended their shared nine-year journey, receiving a heart of his own.
Voncile McCrae jokes around with her son Stan Larkin at the Michigan Frankel Cardiovascular Center on Thursday, May 26, 2016. Both Larkin brothers were born with a form of cardiomyopathy and have both received heart transplants. Melanie Maxwell | The Ann Arbor News
Domonique said the transplant has changed his life, giving him a new sense of purpose that he had been without since the brothers' diagnosis in 2007.
"It's been wonderful," Domonique said. "It's been like having a new life. You can do everything you weren't able to do and everything you thought you would probably never be able to do again. You can live without the restrictions you had when you were sick and not have to worry about every little thing."
Giving the Larkins another chance to be active and have new purpose in their lives is what transplantation is all about, Magee said.
"It really shows you what we're striving to accomplish with transplantation - giving people their entire lives back and letting them live happy lives as well as contribute meaningfully," he said. "That's the truly touching part about transplants."
Stan is now looking forward to the same future as his brother, filled with physical activity, without the restraints of the Freedom driver - even if it has kept him alive. Although he won't be able to find out who his donor was
He knows he'll need to take it easy for a while, but he's eager to test out his new device - his new heart.
"I'll probably run a few pick-up games, but not right away," he joked. "I haven't taken a shot yet without the backpack hooked up. I just want to put the heart to use."
Martin Slagter covers higher education for The Ann Arbor News. Reach him at mslagter@mlive.com or on Twitter.