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Published on 04/07/1999 All articles from this issue

On the road back

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By Joanne Griffith Domingue

Town Crier Staff Writer

After a heart transplant, 14-year-old Los Altos youth Adam Vasser begins his life anew

For Adam Vasser, March 31 was the first day of school. While his friends were heading back to Egan Intermediate School last September, Adam was clinging to life in the pediatric intensive care unit at Lucile Salter Packard Children's Hospital at Stanford.

His heart was failing. Fast. He needed a heart transplant. But at first he was too sick, even for a transplant, his one chance for a return to health.

But this 14-year-old boy hung on. Following numerous cardiac arrests, a rare blood infection, liver and kidney failure, 10 weeks in pediatric intensive care and more crises than his parents Karen and Mark thought possible, he stabilized.

Two weeks before Christmas, he received a heart transplant.

A week ago, he was back in school.

"It was kind of like normal to me," Adam said. "People said 'hi' and stuff, but it was not a big deal. It was just the way I hoped it would be, like a normal day. I was just glad to be doing normal stuff."

Last July began like a normal summer. For the sixth year in a row, Adam played on the Little League All-Star team, earning honors for his pitching and hitting.

Then the Vassers headed off to Montana for a vacation, visiting family.

Adam "had the flu when we left," Karen said. "But so did I and Ben," Adam's 10-year-old brother. "But Adam's hung on."

He'd been feeling "blah" for much of the summer, Karen said, even though he was playing All-Star Little League.

On Aug. 8, he wasn't feeling well, and his ankles were swollen.

So the Vassers, who were heading out to Old Station, California, on a fishing trip, decided to have him checked out "before traveling to the sticks."

They drove down from Kallispell to Missoula, Montana, where they visited the hospital.

"What we didn't know then, and the life-road we would travel from that point, is truly unbelievable," Karen said Dec. 8.

the fifth-month anniversary "of that innocent day" back in Montana.

"That was definitely a shocking day," Karen said.

The doctors in Missoula listened to Adam's heart, took X-rays and diagnosed congestive heart failure, Karen said. He had an enlarged heart and a blood clot.

"We never suspected a heart problem. We had just walked in with his swollen ankles," Karen said.

But he failed immediately.

"As soon as they admitted him, they couldn't be sure they'd save him," Karen said.

Doctors put him into intensive care, stabilized him and contacted Stanford.

He was diagnosed with cardiomyopathy, the most common indication for a heart transplant, said Drs. Daniel Bernstein, Vaughn Starnes and David Baum, pediatric cardiologists at Stanford University School of Medicine and Stanford University Hospital.

The first two pediatric heart transplants were at Stanford in 1984. "That was the beginning," said Mary Burge, a clinical social worker who works with transplant recipients and families at Stanford.

After seven days in the Montana hospital, Karen and Adam flew home to Los Altos on a Saturday. On Monday, Adam walked into Lucile Salter Packard Children's Hospital at Stanford.

He developed complications following a heart biopsy that led to internal bleeding, a rare blood infection and two weeks when he was unconscious.

"He had many surgeries to stop the bleeding," Karen said. "Several times they said there was nothing they could do. They'd 'hang blood' and hope more went in than came out. He used a lot of blood. They stopped all the bleeding problems, but his heart was failing fast.

"Then his kidneys and liver failed. He was bright orange for weeks, following the liver failure. He was too sick for a heart transplant. He was bedridden until October, when he took his first steps," Karen said, the first he had taken since that August day when he walked into Packard Children's Hospital at Stanford.

By mid-September, Adam had endured "more in four weeks than a lifetime of most people," Karen said.

As word went out about the life and death crisis the Vassers were facing, the Los Altos community responded. "There are hundreds and hundreds of people supporting us," Karen said in a Sept. 16 e-mail, "from blood donations, meals, yard work, kid taxi, hand holding, computer network. Mark and I strongly feel this support, and it has helped us to continue."

The Town Crier first approached the Vassers about a story in September. But at that time the Vassers were "totally drained, exhausted and stressed. There are far too many scary variables in Adam's life right now."

But we stayed in touch, by e-mail.

Karen developed an e-mail list for sharing news and keeping friends current with Adam's condition. Her brother Chris Taylor of San Jose, a computer expert, developed a Web site. By October, Karen was sending Adam updates by e-mail, almost daily.

Waiting

It was a bumpy road of highs and lows, with one day when he'd be feeling better, the next he'd feel awful.

Oct. 21, 7:44 a.m. "Status quo is a good thing."

Oct. 26. "More walking, more appetite, more blood, more pain ... His now skinny arms are filled with shot holes and bruises ..."

Oct. 30, 9:30 a.m. "I felt like pinching myself yesterday ... Adam was totally and completely his old self ... I was so happy ... He doesn't remember much about those many days of crisis after crisis. He is telling funny stories now and laughing without pain ... "

Nov. 11. "His color is terrible, he is blue and purple ... he can't stop shaking. He is throwing up again. Heart, where are you?"

Nov. 12. "They are going to take the IV out of his foot, a little obstacle to walking at the moment."

Nov. 20. "Finally the source of bleeding and cause have been identified ... He has esophagitis and a hiatal hernia irritated by the feeding g tube going down every night ..."

Nov. 23. "Adam is back to being eligible for a transplant. Last week's bleeding episode disqualified him for several days."

Dec. 2. "Adam said that he forgot what his room and our house look like. So I went home and took photos, clutter and all (to make a photo album). ... This book has been great. He looks at it all the time and reminisces."

Dec. 5. "Adam has been questioning several times lately ... about how much more can he take. He is starting to feel claustrophobic in here."

New heart

Dec. 10, 4:38 p.m. The call finally came, "only I thought it was going to be a beep, and I had envisioned it in the middle of the night. It was a phone call at home, after I had just returned from Mervyn's ... I sped to the hospital ... We are ready for positive thoughts."

Adam was "nervous and anxious," Karen said. About 10 p.m., Adam headed off to the operating room. Taylor issued e-mail updates throughout the night.

5:20 a.m. "His new heart has been implanted in him but hasn't been 'turned on' yet."

6 a.m. "The new heart is cranking and doing well."

7 a.m. The surgeon said "it was the second hardest transplant he'd ever done ... There is still bleeding...

"A memory I'll never forget is watching Dr. Robbins walking away after briefing all of us. He walked slow, in blue scrubs, head down, shoulders slumped, weaving a little bit, clinging to the wall, totally and completely exhausted..."

Recovering

Dec. 12, 3 p.m. Karen e-mailed that "so far so great ... These next couple of weeks are extra risky ones."

10:30 p.m. "I told Adam yesterday was almost as big a day as when he was born."

As the Vassers celebrated the chance of new life for their son, they also sympathized with the loss of the donor family. "We are rejoicing as they mourn," Mark Vasser reflected in an e-mail. "It is a hard concept to try and process emotionally ... We hope that the wonderful family that has allowed Adam a new chance to live will feel our love and unending thankfulness for their gift."

As she watched Adam begin his recovery, Karen said, "I am amazed by the miracle I am witnessing, live and in person."

Adam made it home in time for Christmas.

As his recovery progressed, he ran into many setbacks, beginning with hernia surgery Dec. 21. Sometimes he felt like everything ached. A bout of irregular heart beats took him back to the hospital.

On Jan. 23, he developed a blood clot in his leg - which explained some of the leg pain he had been having, Karen said.

By Feb. 9, people began reporting Adam sightings around Los Altos, as he visited school basketball games, walked around his neighborhood and went out to eat.

By the end of March, Adam was ready to go back to school. "I'm kind of tired of being home all the time," he said. "That sounds crazy. But it's kind of weird when I don't have anything to do."

Not many friends had come to see him, he said, "because they're afraid they'll make me sick."

Adam has a new dog, a small "anything dog" from Pets in Need in Redwood City, Karen said. The family named her Lucy, after the Lucile Salter Packard Children's Hospital.

"He was depressed, so we got a dog," Karen said.

Life is beginning again for Adam.

"I can expect to do anything," he said, "but not play football or wrestle. I don't like football anyway. I like baseball, soccer and basketball," he said.

"You don't think about stuff you used to do. I can't sit on the floor because I can't get up.

"I've been noticing flowers on the trees. I never used to think about that. And rain on the roof. I like to hear it. I can really hear it," Adam said.

Adam has been back in the hospital four times for overnight stays since coming home from the transplant. "I'm the bad luck king," he said.

He is not considering a career in medicine. "No way. I'd like to help people, but not with the craziness of the ICU."

And he'd like to play baseball. He carries around an autographed Mark McGwire baseball bat, a gift from an anonymous donor from Los Altos Baptist Church.

His room looks like a sports museum, with signed baseballs from Shawn Estes and Bill Mueller of the Giants, Dave Righetti.

He treasures them all. But the most special gifts, were when people came to visit, he said.

"They came and talked to me. That really picked up my spirits a lot. But the bat is good," he said.

Now Adam said he's ready "to be a regular guy again."

But along with being a regular guy, reminders of his transplant will be with him always. He must for the rest of his life take anti-rejection medicines.

Karen holds up a duffel-sized bag rattling with pill bottles and lifts up a checker-board sized case with compartments to hold his pills - a giant-sized pill minder.

"I take my pills and have side effects. Or I don't take them and die," Adam said. While in the hospital, "I saw a lot of that stuff, kids dying."

The side effects include puffy faces and extra hair.

"The transplant kids - you can spot them - with the puffy cheeks," Karen said.

"You grow a lot of hair," Adam said. "It's worse for the girls. But in a year, the side effects will go away, the puffy cheeks and hair stuff."

Adam is happy to be back to school, to normal stuff. In fact, Karen said he is looking forward to a dance this weekend.

"I think it's too soon," she said.

"We had world-famous doctors who said it was a miracle," Karen said, referring to Adam's survival and progress through his heart disease and transplant.

Life after a transplant is not the same, Stanford social worker Burge said. "It's quite wonderful. You go from nearly a great loss to salvation."

And back to normal things.