SPOKANE — Scott Smith can’t wait to go swimming with his new heart.
He recalls swimming in a lake with his best friend during summertime near Kalispell, Montana, where he grew up. They would hike up one side of a hill, bike down the other side and jump into the lake at the bottom to swim.
He hasn’t been able to do that since he was 17 years old — when his heart nearly gave out after he contracted a virus.
Now, eight years later, after living with a device half inside, half outside his body that kept his heart going as he awaited a transplant, the 25-year-old is recovering from his long-awaited surgery that marks a fresh start.
The night before his high school graduation in 2014, Smith was flown to Providence Sacred Heart Medical Center, where surgeons implanted a left ventricular assist device — LVAD for short — complete with a cord that came out of his abdomen and attached to a controller device to help keep his heart pumping.
Thus began his life with a pouch on his hip, to hold the controller.
Smith had to remember to replace his LVAD batteries, which lasted up to 13 hours. He couldn’t get the cord or the controller wet. Even with these restrictions, Smith described his quality of life the last seven years as remarkably better.
He always knew he would need a new heart, and after his device gave out on him earlier this month, he knew he could be in for a long stay at the hospital until a suitable heart became available.
On Sunday, after eight years of waiting, Smith got the heart he was waiting for.
How organ donation works
Transplants are made possible through organ donation. The actual process of getting organs to people who need them, however, is a complicated one, managed by hospital staff and the team at LifeCenter Northwest, which oversees organ donation in most of Washington, Alaska, North Idaho and Montana.
Organ donation spans the gamut from kidney or partial liver donations, which can be done from a living donor , to more serious donations of lungs or hearts, which mean a person has died and donated their organs as a result.
Not every person who dies can donate their organs; in fact, if a person dies outside the hospital, it is difficult for medical teams to keep their organs functioning in order to give them to another patient. Most often, organ donors are hospital patients, who have died or are brain-dead, but still have a heartbeat, said Dominic Adorno, vice president of clinical operations, at LifeCenter Northwest.
Not everyone is an organ donor, and medical teams cannot use their organs without their prior consent or the family’s consent to do so.
About 60% of Washington residents who have a state-issued ID card or driver’s license are organ donors, according to the Department of Licensing as of July 18.
Adorno said there is a need for more donors. Nationwide, just shy of 107,000 people are waiting for organs, and in 2020, there were just 12,588 people across the country whose organs were used.
“It certainly doesn’t meet the need of the people who are waiting and there’s a lot of effort to work further upstream,” Adorno said.
Of eligible donors, Adorno said about half of patients have indicated they want to donate organs, either on their driver’s license, through the organ donation network LifeCenter, or through an advance directive.
“The more we can promote organ donation, the better chance those people have who are waiting for replacement organs, the better off they are going to be,” Adorno said.
When a patient is declared brain-dead, and an organ donation has been approved, the clock starts ticking. LifeCenter helps coordinate and match organ donors to recipients throughout the region and country, and through a matchmaking system, within hours of an organ donor dying, those organs have likely been assigned to a new patient, sometimes miles or states away.
Different organs last longer than others. Hearts and lungs must be transplanted quickly, and often the operation on the person receiving the organ has begun before their new organ arrives, because “timing is so critical,” Adorno said.
Organ donation is made more complicated by the need for donated organs to match their recipients’ compatible blood types. While people with type O blood are universal donors for blood, it doesn’t work that way for organ donation. Smith, who has type O-negative blood, could only receive a heart from a person who has the same blood type.
Additionally, the organ has to be the right size; a heart from a person much bigger or smaller than Smith would not be compatible.
Doctors, and even Smith himself, thought he might have to wait months in the hospital for a transplant.
On Sunday, Scott Smith Sr., Smith’s father, did not get overly excited until he heard two crucial words right as his son was wheeled into the operating room.
“Heart’s good,” he recalled one of the nurses reporting after getting a phone call.
The transplant took about 12 hours, and Smith is recovering in the cardiac intensive care unit while his body adjusts to the new heart.
Smith Sr. understands how important organ donation is. Smith called Sunday the greatest day of his and his wife Sonja’s lives. The entire family is registered as organ donors, he said. Smith’s parents wrote letters to the donor family, who they will likely never know, to show their gratitude.
“Thank you” doesn’t even begin to cover it, Smith Sr. said, but he said he expressed gratitude and described his son’s vivacity for life.
“Our son is the most upbeat person; he’s made us realize how precious life is, and you never know what will happen one day to the next,” she said.
The art of the heart transplant
Science has come a long way in being able to keep people’s hearts pumping, from stents to devices like Smith had, so many more people are surviving what would have been deadly heart attacks a few decades ago.
That said, the technology only goes so far, and in Smith’s case, a new heart was the best option.
Dr. Andrew Coletti, a transplant cardiologist at Sacred Heart and one of Smith’s doctors, said the art of the transplant is a delicate dance between suppressing a person’s immune system enough so that it won’t attack the donated heart while not suppressing it so much that a person can’t fight off infections.
People who need assistive devices or transplants are in the Stage D heart failure category, which is comparable in a way to Stage 4 cancer, Coletti said. In Stage D patients, everything from stents to bypasses to valve fixes have not helped, and they either have an assistive device or are awaiting a transplant.
For Smith, his device greatly improved his quality of life. He could hike, work, tinker with cars and live a fairly normal life. He credits his device for keeping him alive, including on a couple rare occasions when he didn’t replace his batteries in time.
He is very active, and compared to the IV-drip pouch he had to carry around his senior year of high school, the device has been much better.
“I work 40-plus hours at very physical job, and I’ve had all these crazy benefits where it’s almost a new normal with the LVAD,” he said last week.
That said, a new heart means a full range of activities and life that were hampered by the need for Smith to cover his pump when he showered or plug into the wall at night, relying on electricity at night and batteries during the day.
“When you have an LVAD you truly are dependent upon a man-made machine,” Coletti said. “It is highly unforgiving, if you forget to charge your batteries and you’re bathing and you haven’t adequately covered the important parts of that pump, the risk of infection and death is high.”
Coletti said they rarely accept a donated heart from a person older than 55, which means their death often is the result of a tragic accident. This also means a long, long wait list for many patients who need a transplant.
There are currently 79 patients waiting for heart transplants in Washington state.
For young patients, who can live their lives with devices like Smith, the wait list wasn’t the worst place to be, as doctors waited and kept an eye out for a possible match.
“We want to hold out for the very best heart we can get,” Coletti said.
‘I am in a really great place’
Smith had made it through the pandemic as a high-risk individual who continued to work, and he was grateful to get vaccinated. The state had been reopened for less than a month when his device started sounding an alarm while he was at work.
The 25-year-old works as a fire technician for a local company, and he has been active since he got his LVAD seven years ago.
The alarm was enough of a scare that Smith called his doctors; after he dropped off his co-worker and returned his work truck, he drove himself to the hospital.
His medical team had hoped the problem could be solved by fixing the external wire that connects the internal pump to his controller with batteries outside. It couldn’t, which meant that there was likely a problem with an internal wire or lining of the device.
Doctors feared that if the internal wiring was jeopardized and the whole machine shut down, Smith would not likely survive unless he already was at the hospital.
Smith expected to wait in the hospital for several months for a new heart, especially because of his rare blood type.
When he was admitted to Sacred Heart a few weeks ago, the silver lining of Smith being unable to leave was that he was moved to the top of the wait list for a heart, a list he’s been on for eight years.
Over the weekend, Smith’s long wait came to an end.
He received what his caregivers called the “unicorn heart” which matched him perfectly in size and blood type.
The pandemic has been an incredibly difficult year for health care providers everywhere, including transplant teams, which were slowed down by COVID protocols and restrictions.
In 2020, COVID patients were not considered eligible organ donors, Adorno said, and it was not until this year, that those rules began to change.
Now, people who have had COVID-19 and are 28 days past their initial infection, regardless of whether or not they continue to test positive, can donate their organs.
At Sacred Heart, Coletti and the team there completed 13 heart transplants in 2020, but the pandemic was challenging. With larger medical centers focused on saving and treating COVID patients, it was difficult to focus on organ donation.
“It was hard to dedicate resources to taking care of donors,” Coletti said.
In 2020, 68 patients died in the LifeCenter Northwest region while waiting for an organ donation. There are just five transplant centers in the four-state region that LifeCenter Northwest serves, and just three of those hospitals do heart transplants.
Sacred Heart Medical Center is the only center east of the Cascades that does all transplants, including those of hearts.
Smith and his family moved from Kalispell to Spokane to be closer to the team of doctors that have now worked with him from emergency to device implantation to transplant.
“Having an infrastructure and a big center like this to care for these patients on these pumps is so incredibly important because of the long-term relationship you have with this person,” Coletti said.
Smith’s recovery will likely keep him at Sacred Heart for the better part of a month. But when he gets out, his quality of life will get even better.
Smith is an optimist. Even before he got his transplant, he was chipper, describing the books and movies he would likely work his way through as he waited at the hospital.
“What really helps is knowing there’s nothing I can do to change the outcome so there’s no reason to worry,” he said last week before he got news of the heart on the way.
He loves the Lord of the Rings books, and he was thinking about beginning the “Silmarillion,” the encyclopedic “bible” to the J.R.R. Tolkien trilogy, during his hospital stay to keep himself busy.
He was in good spirits even before his bad fortune turned to good.
“I am really in a great place to have had this happen,” he said last week. “It’s not great, but it is. It sucks, but it’s a good place to be.”
Arielle Dreher’s reporting for The Spokesman-Review is funded in part by Report for America and by members of the Spokane community. This story can be republished by other organizations for free under a Creative Commons license. For more information on this, please contact our newspaper’s managing editor.