PORT ANGELES — A 19-year-old Port Angeles High School graduate is awaiting a heart transplant at Seattle Children’s Hospital.
Landon Smith was born with a condition called hypoplastic left heart syndrome. He was born with half a heart, said Michelle Smith, his mom.
Early on, doctors told Michelle and Landon’s dad, Richard Smith, that getting a transplant is not a fix, it’s just changing diseases.
“They’re saying about 15 to 18 years that the heart does really well,” Michelle said.
“He will probably in his lifetime need another transplant because he’s having it so young.”
Landon said he’s excited about it.
“I just, I don’t really know, like fully, how to describe it,” he said. “I’m pretty excited about getting a full heart. I just don’t know how it will be different, that’s what I’m nervous about.”
Being in the hospital puts Landon at a higher priority of receiving a new heart, said Michelle, who spoke from an intensive care unit in Seattle.
“He’s been on the waitlist for almost a year and a half,” Michelle said. “They’ve recently discussed moving him up the waitlist, which would put him in the hospital to wait for the transplant.”
The Smiths are pursuing a heart transplant now, partly because Landon is developing liver issues.
“He doesn’t have his left ventricle,” Michelle said. “They’ve done reconstructive surgery; he’s had a few open-heart surgeries. What’s happening now is, he’s a Fontan patient, so the liver is getting damaged from the lack of correct pumping on the heart’s part. He’s developing cirrhosis of the liver.”
If he doesn’t get a heart soon, Landon may need a liver transplant as well, Michelle said.
Doctors are discussing his case, she said. It’s still up in the air.
“If the correct heart came in tomorrow and nobody was ahead of him, it was the right fit, he would just be looking at a heart, for now,” she said.
Landon’s move to the hospital increases his chances of getting a heart. It also gives his doctors a chance to assess his liver more closely, Michelle said.
“That will potentially be coming into play, the longer he waits,” she said. “He may need a liver as well, if it goes on for another year or so.”
At the hospital, Landon has been on an intravenous medication intended to help his blood pressure and blood flow while he waits for a heart.
Moments before the phone call, Michelle learned that his blood pressure wasn’t responding well.
“It keeps dropping a little too low,” she said.
Doctors may decide to send him home if his body continues to react poorly to the medication, Michelle said.
Currently, the family is seeking to establish a 1A status for Landon, Michelle said. That typically involves hospitalization. Patients at status 1B are at home, she said.
“Still a pretty high priority,” Michelle said. “1As come ahead of that person.”
Landon has been status 2 for the past year.
“It’s very confusing,” Michelle said.
Landon is upbeat, she added.
From the outside, Landon looks good, he looks healthy, but he is slowing down, she said.
“He has always tried to be pretty active. We never really limited him, we let him limit himself,” Michelle said. “When he was younger, we did some hiking. He hiked Storm King when he was little, after he had already had three open-heart surgeries. He was younger, so I think it was easier on his body. He was a little smaller. ”
Landon also loved dance, which he did for quite a while, she said. He wanted to participate in sports, but doctors and coaches held him back from that, she added, so he was never very active in terms of running.
He was fairly active with hiking and biking until the last two years, Michelle said. He needs to take breaks on short walks now and has stopped biking entirely.
Landon said he is looking forward to being able to take long bike rides with his younger brother, 15.
“I just feel like I have to take things a lot slower and I can’t keep up as much with some people I used to be able to keep up with,” Landon said. “I feel a little less helpful around the house sometimes, when I have to move stuff.”
The decline of Landon’s quality of life has factored into doctors trying to increase his priority level, Michelle said.
“Some of that decision has to do with his age and where he’s at in life,” Michelle said. “Finishing high school, he wants to get a job, he wants to go to school potentially, but he also knows he’s sitting on a list, so he’s had a hard time getting work.”
When speaking with prospective employers, Landon has been honest about potentially needing to drop everything if a heart becomes available, Michelle said. That has not led to employment.
His life has been on pause, she added.
Seattle Children’s Hospital has higher than average success rates, partially because they’re so diligent with aftercare, Michelle said.
The biggest risk period is in the first year following the surgery, she added. Doctors at the hospital estimate they would keep Landon for one to three months to heal following the surgery .
“A lot of that is to make sure that they have rejection under control,” Michelle said.
Upon leaving the hospital, doctors want Landon to move into transplant housing in Seattle, Michelle said. He will need to go to daily appointments for blood draws, she said.
“They said that could be another three months,” Michelle said. “It’s always possible that things could go super smooth and he’s able to come home sooner.”
Landon said he’s up for the extended stay in Seattle, which could extend for up to six months following his transplant.
Seattle Children’s Hospital has been helpful with finances, another part of the motivation for pursuing the transplant as Landon is still young enough to access the facility, Michelle said.
“They help with finances, gas vouchers, food vouchers, there’s Ronald McDonald House, so there’s lots of resources to help,” she said. “It’s not a ton, but it does count.”
The hardest part is the commute back and forth from Seattle, Michelle said. As a business owner, balancing work and traveling to Seattle is difficult and adds up, she said.
Medication is the biggest expense to consider moving forward, she added.
“He’ll always be on medication and he’ll be looking anywhere from $2,000 to $5,000 a month for meds,” Michelle said. “We’ve always told him, ‘You’re going to need a really good job that has really good medical benefits.’”
Michelle said she is considering setting up a bank account in Landon’s name for those interested in supporting the family with expenses, but she has yet to do so. Those interested in offering support can reach her by phone at 360-809-4516 or by email at michelledean05@hotmail.com.
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Reporter Elijah Sussman can be reached at elijah.sussman@sequimgazette.com
