PORT ANGELES — Landon Smith, a 19-year-old Port Angeles High School graduate who received a heart transplant in mid-January, has been admitted to Seattle Children’s Hospital.
Doctors say his body is rejecting his heart.
Smith’s mom Michelle said a biopsy showed a moderate stage-two rejection. Landon’s rejection is on the mild end of moderate, she added.
“He’s had a couple of sort of setbacks that just weren’t quite adding up,” Michelle said. “Normally they do a biopsy a little further out than this, but they decided with everything going on with him to do the biopsy earlier.”
Landon had been staying at the Ronald McDonald House near the hospital to recover.
Michelle said doctors wanted a biopsy six weeks post-surgery instead of waiting a longer period.
“He had a few things going on like vomiting daily randomly, and his oxygen drops in his sleep and one of his valves doesn’t close all the way,” Michelle said.
Typical signs of rejection, like fever or flu-like symptoms, have been absent, Michelle said.
Doctors likely will do another biopsy in the next month or two to be sure that the rejection is under control, Michelle said.
“Not as bad as it could be,” she said. “It just means getting admitted back to the hospital, on IV medication and steroids.”
Following the transplant, doctors were gentle with their initial preventative rejection protocol because Landon was exhibiting signs of struggling kidneys, Michelle said.
“They speculate that that might be what led to rejection,” she said.
Landon is expected to be in the hospital for two to three days on IV medications, but he may need to stay longer as doctors investigate why his oxygen levels are dropping in his sleep.
“They don’t really know why,” Michelle said. “They’ve done X-rays on his lungs. Everything looks really good. There’s really no reason why it should be dropping other than if it’s caused by the rejection.”
Michelle said Landon’s kidney health is still largely unknown. They plan to see a specialist but are unable to do so until July, she said.
“The cardiac doctors are talking with the kidney specialists,” she said. “They are working with them on how much meds they can give him and what his kidneys can stand. He does have kidney damage, we know that. The [blood urea nitrogen] has improved quite a bit into a normal range, but some of the other numbers are still slightly elevated.”
Tests fluctuate as Landon is given lasix and other diuretics, Michelle said.
“They’re still hesitant with the kidneys, they’re still conscious of that,” she said. “When they did the biopsy of the heart and the heart cath, they wanted pictures, but the doctor that does the heart cath said the dyes to do the heart cath are really hard on the kidneys, so he did not do it.”
Doctors say they have Landon’s immunosuppresant medications in a good range, Michelle said.
“I think they are planning to fight a lot of the rejection with heavy steroids,” she said. “That is not as hard on the kidneys. That is hard for fluid retention, and so then they give him diuretics and that is hard on the kidneys. So it’s kind of like this little puzzle.”
Landon is in good spirits and taking the whole experience in stride, though he is little stir crazy, Michelle said. Before being readmitted, Landon had hoped to return to Port Angeles for a long weekend, she said.
“Just to get a break. That is now off the table,” Michelle said.
Landon has been at Ronald McDonald House, with his dad, for the last few weeks.
“Playing a lot of card games, board games and healing,” Michelle said. “He was pretty tender for a while. In the last week, physically, he has been feeling really good as far as surgery recovery.”
Though he needs to be careful with whom he interacts because he is somewhat vulnerable, the Ronald McDonald House can be fairly social. Landon was able to play pool with another teenager going through cancer treatment one night, Michelle said.
Landon and his family have made some connections and found support with other patients and families.
“My husband’s talked with a couple families, some of them have the same diagnosis as my son,” she said. “My husband met a woman who is there with her 2-year-old who has what my son had prior to having a transplant. They’re going through heart failure and waiting for a heart themselves.”
Michelle said she has built up a community of people through Landon’s former disease, Hypoplastic Left Heart Syndrome. She is still in touch with people she’s met through Landon’s illness, when he was five years-old.
Landon has been moving around pretty well, Michelle said.
On the steroids, Michelle said Landon is feeling a little antsy and moody but that he’s handling it better than she thinks she would.
Michelle said, all things considered, she is holding up fairly well. She said she and her family have been bracing for this possibility for a year and a half and they are encouraged that the rejection is on the mild side of moderate.
Working three days a week in Port Angeles, she has been able to make time for herself away from the hospital, enjoying reading books and coffee in the sun as the season shifts.
“Doing the best we can, for sure,” she said. “Kind of just giving ourselves grace, but we’ve never done this before and it’s just what it is at the moment and our family is OK with it being that.”
“I have close friends who listen when I need to call and vent,” she said. “I’m close with my family, my sisters and my parents. They just listen, which is what we need.”
Family, friends and neighbors pick up the slack from watching the animals when the Smiths leave town, to picking Landon’s brother Ryder up from school, Michelle said.
Though the family doesn’t take everyone up on their offers for support, it’s nice to know the support is there if they need it, Michelle said. The family has received offers of support from people in the Seattle area as well, she said.
The family has dealt with Landon’s health conditions all his life.
“It’s kind of our norm, unfortunately,” Michelle said. “We joke a lot. Some people are like, ‘I can’t believe you’re laughing about this.’ We try to have fun.”
Laughter can be healing, she said. Watching stand-up comedy and going to stand-up comedy shows has helped the family laugh at life and not become too serious, she added.
“We make dark jokes sometimes,” Michelle said. “It’s probably a horrible example, but I was talking about school and Landon’s job and what he was looking at doing later on and now he’s been in the hospital for so long he’s like, ‘I’m not sure I want to be in the hospital and work in the medical field.’ My 15-year-old has the darkest humor of all of us and he’s quick-witted and he’s like, ‘Yeah, he’s had a change of heart.’”
Michelle said the family has appreciated the letters of support and donations they have received from the community.
Funds received allowed the family to be with Landon following the transplant. As of Thursday, it had raised more than $5,650 toward a $6,000 goal. The campaign can be found at https://www.spotfund.com/story/9dbf20b5-b064-41a3-b7a6-2211a4b4b835.
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Reporter Elijah Sussman can be reached by email at elijah.sussman@sequimgazette.com.
