Thomas Kim had all but forgotten what it was like to make long-term plans. With his wife, Yona, by his side, the 48-year-old spent years focused on trying to figure out what was causing his extreme fatigue and shortness of breath, what treatment he needed, and how to maximize his chances of seeing his four children grow up.
Thomas, a native of South Korea, was fairly healthy most of his life. But at age 38, he developed type 2 diabetes and high blood pressure. He experienced fatigue and shortness of breath. In 2009, Thomas ended up in an emergency room in Panama City, Panama, where the couple then lived.
He was referred to a cardiologist who diagnosed him with dilated cardiomyopathy, a disease where the heart's left ventricle stretches and dilates, so it can't pump blood as well as a healthy heart. The condition often causes heart failure, and in some people it can be life-threatening.
"I was living day to day because I knew I could die at any minute," Thomas says.
But after seeking care in the United States and undergoing a life-changing heart transplant at Mayo Clinic, the Kims are making plans again. They're looking forward to a family trip to South Korea and are eager to mark milestones with their children.
"I want to see my youngest son graduate college," Thomas says. "I feel confident now that I'll be able to do that."
As his health deteriorated, Thomas consulted with many doctors in Panama and Colombia in 2012 and 2013. Most told him he could manage his condition with medication. Neither Thomas nor Yona were confident that was the case, especially because one of Thomas' family members had died a few years earlier from the same disease.
"We sought second, third and fourth opinions," Yona says. "One of the doctors in Panama told us Thomas would need a defibrillator."
People in Thomas' situation, whose hearts have a low ejection fraction — a measurement of the percentage of blood leaving the heart each time it contracts — often need a defibrillator to prevent sudden cardiac death.
In October 2014, family friends in Colombia suggested Thomas and Yona consider Mayo Clinic. The friends had gone to college with Jose Diaz-Gomez, M.D., now chair of Critical Care Services at Mayo Clinic's Florida campus. At that point, the Kims had never heard of Mayo Clinic, but they allowed their friends to reach out and share Thomas' story.
"I hadn't talked to my dear colleague and friend in 10 years. So his phone call surprised me. I knew that if he was asking me for help, I had to help, especially after knowing more about Mr. Kim's case," Dr. Diaz-Gomez says. "I gave my friend my word that I would help Mr. Kim get the care he needed."
About a month later, after some additional research and discussions, Thomas flew to Florida to meet with Mayo Clinic cardiac electrophysiologist Fred Kusumoto, M.D.
On Nov. 20, 2014, Thomas had a defibrillator implanted at Mayo Clinic. He began a regimen of several medications including beta blockers, ACE inhibitors and other drugs that can improve survival for people with cardiomyopathy.
For the next three months, Thomas traveled back and forth to Mayo Clinic for follow-up appointments and further testing. In February 2015, Thomas returned to Mayo for a cardiopulmonary stress test and cardiac catheterization. Both studies suggested that his long-term outlook would be better with a heart transplant or a ventricular assist device than if he continued with medical therapy. Dr. Yip told Thomas a heart transplant was his best option, and he should begin the transplant evaluation soon.
"The word transplant scared us," Yona says. "We never imagined that would be a decision we would have to make."
Shortly thereafter, testing revealed Thomas had developed pulmonary hypertension. Dr. Yip explained that if Thomas waited too long to make a decision about moving forward with a transplant, the high blood pressure in his lungs would become permanent, and he wouldn't be able to survive the surgery. Dr. Yip also told Thomas he would need to have a ventricular assist device implanted as a bridge to transplant.
"This device is the best therapy we have to reduce pressure in the lungs, so you become a suitable candidate for transplant," Dr. Yip says.
"Dr. Yip is so knowledgeable," Thomas says. "He always had answers for us and was able to give us a long-term view of my condition and what we could expect in the future."
Still, Thomas was apprehensive about open-heart surgery.
A member of his care team, transplant surgeon Juan Carlos Leoni Moreno, M.D., suggested Thomas speak with another patient from Panama in a similar situation who also had a ventricular assist device and was awaiting a heart transplant.
"Talking with him and hearing what his life was like helped to allay some of Thomas' fears," Yona says. "But he was still not ready to move forward with the procedure, and we returned to Panama."
In December 2015, as Thomas' health continued to decline, the Kims made the decision to leave their four children, ages 16, 13, 6 and 4, with their grandmother in Panama and travel to the U.S. where Thomas would have the assist device implanted, and they would wait for a heart transplant.
"I wanted to see my kids grow up," Thomas says. "It was a difficult decision, but at that time my health was our family's top priority."
Thomas began to see the benefits of the ventricular assist device soon after it was placed.
"Before the surgery, I was constantly short of breath," he says. "Just two days after the surgery, I could breathe normally and had much more energy."
Knowing Thomas still might have a long wait ahead for a heart, the family decided it was time to reunite. In June 2016, the children arrived in Jacksonville to join their parents.
"It was wonderful to be able to spend time with them and have enough energy to play with my two young boys," Thomas says. "We felt a great void without the kids."
A year and a half after moving to Florida, on Father's Day, Thomas got the best present he could ever hope for a new heart. Mayo Clinic heart transplant cardiologist Parag Patel, M.D., called the Kims to let them know the organ was available.
"Dr. Patel explained everything to us and walked us through every step of this journey. He was so kind and reassuring," Thomas says. "When you know this is your only option, and you have confidence in the team of doctors treating you, it's a lot easier to go through this whole journey."
After the transplant, Thomas' health improved significantly — a fact that is a source of satisfaction for Dr. Diaz-Gomez.
"Each time I see him, he looks stronger and happier," Dr. Diaz-Gomez says. "When I think of how he's celebrating his life and is healthy enough to enjoy his family, it makes me very happy."
For all the doctors and everyone involved in Thomas' care team at Mayo Clinic, the Kims are extremely grateful.
"The team of doctors we had was incredible. They always showed us the light at the end of the tunnel," Yona says. "We had absolute confidence in them from the very beginning."
Tags: Dr. Daniel Yip, Dr. Fred Kusumoto, Dr. Jose Diaz-Gomez, Dr. Juan Carlos Leoni Moreno, Dr. Parag Patel, heart failure, Heart transplant, Mayo Clinic Transplant Center, Transplant, ventricular assist device