At a Glance:
An avid basketball player and father of two, Lance has always been an active, healthy person. But in 2012, during a routine checkup, his primary care physician (PCP) noticed some irregularities in his heartbeat and referred him to a cardiologist. When the cardiologist informed Lance that he was experiencing abnormal heart rhythms and he would need a pacemaker, it took Lance by surprise.
“I’d been seeing that particular doctor for probably five to 10 years and he never noticed anything drastic at all,” said Lance. “I’ve always been in shape and I didn’t have any history of heart problems, so it really threw me off.”
For about a year, everything seemed to go back to normal — Lance went about his daily routine and his pacemaker never went off. But in late 2013, after coming back from a trip to Las Vegas, he was suddenly overcome with exhaustion and had to stay home from work the next day.
Recognizing something wasn’t right, Lance saw his doctor, who, upon hearing his symptoms, recommended he schedule an appointment with the heart specialists at Cedars-Sinai’s Smidt Heart Institute as soon as possible.
When Lance arrived at the Smidt Heart Institute in April 2014, his doctors discovered that his ejection fraction (the percentage of blood pumped out of the heart with each contraction) was less than 10% — a normal ejection fraction is about 55%.
Lance was scheduled to come back for additional testing several weeks later, but a few days before his follow-up appointment, Lance lost consciousness in the waiting room of his PCP’s office. He was rushed to a nearby Cedars-Sinai affiliate, where he was told that his condition was critical and he would have to remain in the hospital.
Lance was diagnosed with congestive heart failure caused by dilated cardiomyopathy and his health began deteriorating rapidly. He dropped nearly 50 pounds — going from 210 down to 163 — in a matter of weeks.
Lance was in desperate need of a heart transplant, but because of his size — Lance is 6’3” — his doctors estimated it could take months for a matching donor heart to become available. Because Lance wouldn’t survive the wait, his doctors knew they needed to implant a mechanical circulatory support (MCS) device to bridge Lance to a transplant.
His physicians explained that because both sides of his heart were failing (biventricular failure), implanting a left ventricular assist device (LVAD) would not work for him. The good news was that there was another option: the SynCardia temporary Total Artificial Heart (TAH).
While learning about the TAH for the first time came as a bit of a shock, it was actually Lance’s profession that helped him absorb the information and ultimately say yes to the surgery.
Courtesy of copinghearts.com
When Lance woke up after his implant procedure, one of the first things he noticed was the change in his energy level. “I don’t drink energy drinks, but that’s what I’d compare it to,” he remembers.
The other big difference was the sound of the Companion 2 (C2) Hospital Driver sending pulses of air to pump his TAH.
“They tell you there will be a noise, but you don’t really embrace what that means until it’s there. I remember thinking, ‘How am I going to sleep? How will my wife sleep?’ But after a while, you don’t hear it anymore — it becomes white noise.”
“It actually relaxes me sometimes,” said Lauren, Lance’s daughter, of the noise made by the driver, “because the heart beating lets me know that he’s healthy and safe and at peace.”
Within a few weeks, Lance’s condition had stabilized and he was switched to the Freedom® Portable Driver, a smaller, portable pump for the SynCardia TAH that can be carried in the provided Shoulder Bag or Backpack. A few weeks after that, he was discharged from the hospital to wait for a matching donor heart at home with his family and friends.
Lance was thrilled to be home, but it also brought new challenges, including educating his family that the wait for a transplant might be a long one because his large body size meant he would need a large donor heart.
“I had to get the people in my life to understand that it wouldn’t just be a couple of months. I had to manage their expectations and get them to feel secure — especially my children. I’d never really been sick, they thought I was like Superman.”
As time went by, Lance began to regain his strength and regain some of the weight he had lost. Three months after his TAH implant surgery, he was doing push-ups on a daily basis and had even started a new job.
“I could basically do everything, within reason,” Lance recalls. “I went to soccer games, the grocery store and took the dog on walks in the neighborhood. I couldn’t stay out in the sun too much [to avoid a heat alarm], so sometimes at games I would have to go sit in the car for a little bit. But most of the time, I kept up my usual activities.”
On Father’s Day 2016, approximately 25 months after receiving his TAH, Lance got a call from the hospital that a potential donor heart had become available. He was prepared for surgery and even put under anesthesia; however, additional testing revealed that the donor heart wasn’t an ideal match and his doctors ended up calling off the procedure.
“When I came to, I could hear the [TAH], so that was bittersweet because I knew I hadn’t gotten the heart, but I was thinking, ‘Hey, it’s OK, I can go back in.’ The hardest part was telling my family. I mean, you stay positive as best you can. I’m not really a big person to cry, but I shed a tear. But then you move on.”
Unsurprisingly, when Lance got a second call about a potential match in August 2016, he was excited but also cautious about getting his hopes up. Luckily, this time around, his doctors determined that the donor heart was the one they’d been waiting for. Lance was thrilled to have a new heart, but really, he was most thrilled about the prospect of having a normal life again.
“I got out [of surgery] and saw I had the heart, but I was even more excited about going home to my kids and my wife, because I couldn’t see them every day in the hospital, they could sometimes only come on the weekends,” he recalls. “So I was like, ‘OK, now how do I get out of here? What restrictions do I have? Can I start exercising again? When can I go back to work?’”
Lance was able to go home about a week after his transplant surgery, which he largely attributes to the active and healthy lifestyle he was able to live with the TAH while he waited for his donor heart. “With the TAH, I was walking three miles a day. I was in shape, I just needed a heart.”
He remembers the moment he walked out of the hospital with his new heart: “I’m outside in a little courtyard, looking at the sky from inside the car, and feeling like, ‘Wow, I’m back in the world again.’ Everything just smells a little better, it’s all just a little bit different now. Because you become one with yourself and your body again. It was a great feeling.”
About a year after his transplant surgery, Lance had the opportunity to meet his donor’s family.
“There were a lot of tears all around, because there’s nothing you can say,” Lance remembers. “I probably held on to his mother harder than I’ve ever held on to anyone in my life, because she could hear the heart inside me.”
He continues, “The worst thing in the world is to outlive your kids. I was just trying to let them grieve and let them see that the heart was being taken care of. I’m doing my best to live a life that’s exemplary for him and his family. It was an incredibly humbling experience.”
Today, Lance spends as much time as he can trying to give back — in particular, by raising awareness and supporting other heart failure and transplant patients. He serves as a patient ambassador for both the Smidt Heart Institute and SynCardia, and speaks to audiences from time-to-time about his experience.
“It’s a life-changing experience, because you have this thing in your chest, but if you have someone to talk to you who isn’t on the medical side, someone who’s been through the trenches and whose life is so much better for it, there’s nothing to compare to that.”
Photos courtesy of copinghearts.com