A donor’s lungs, a survivor’s heart

LYNNWOOD — Bob Clement maneuvers a handcart stacked with packages and plastic tubs of mail through the glass doors of Alderwood Court, an apartment building for seniors and the disabled.

Inside, a cluster of people eagerly await him, some seated in chairs, others on scooters.

Clement inserts a key that unlocks rows of gray metal mailboxes and begins dropping ads, bills and magazines into the open boxes. On cue, the nearly nonstop chatter begins.

“We love our mailman,” one woman says.

“We share jokes,” says another.

A man who uses a white cane to help guide him through the building’s corridors leans over a nearby balcony. “Hello, Robert!” he says with a grin.

“If I’m late, as soon as I walk in the door, they’re yelling at me, ‘Where ya been? It’s my nap time!’” Clement said.

The daily rituals of good-natured needling and easy laughter, like this one in late October, have been nurtured over the dozen years he’s delivered mail in the neighborhoods surrounding Alderwood mall.

It’s not until he begins the walk back to his mail truck, rolling the now-empty handcart, that there is a subtle sign of how much physical effort it takes for Clement to complete his daily rounds. There is a clip-clop sound as he walks, an uneven gait on the left side of his body.

He reaches for something in the back of his mail truck and then sits for a moment on the tailgate. He holds two titanium leg braces.

“I’ll put one on because I’ve started to wobble a little bit,” he said. “I’m trying to go as long as I can without them.”

Clement’s “wobble” is about the only hint he allows others to see of his challenges. His nearly nonstop smile and frequent, easy chuckle camouflage an uneasy truth: Just a year ago, doctors worried that time was running out. Clement and his family wondered how close to death he was.

* * *

The boundaries of Clement’s life began to shrink in 2009. He was tethered to a 50-foot line of plastic tubing connected to an oxygen tank. At first, he just needed it at night. Then in the spring of 2010, he began taking small oxygen tanks with him to work.

“I had two in my truck,” he said. “If I went into a business, I would stick it in the plastic tub with all the mail.”

His breathing problems, including multiple bouts of pneumonia, began in his youth. But no one knew the cause.

He played Little League and All Star baseball, but his lung problems kept him from making Everett High School sports teams. “I never had the stamina to keep up,” he said.

It wasn’t until he was an adult that Clement finally learned the cause of his problems: Kartagener syndrome. The rare genetic disorder causes a cluster of health problems, including a condition similar to cystic fibrosis. Mucus can’t be cleared from the lungs. Patients have frequent bouts of pneumonia, which scars the lungs.

It robbed him of the simple things most people take for granted, like taking a day hike or the joy of a spontaneous sprint through a field.

Although these problems had dogged him all his life, what doctors told him last year came as shock: He needed a double lung transplant. At 48, his best chance of survival was potentially life-threatening surgery.

Clement, who is also diabetic, wondered if he had a chance of even being considered for an organ donation. His multiple health issues would make surgery far riskier.

In 2001, he had had a heart attack and needed quadruple bypass surgery. The scarring from that procedure would make it far more difficult to sew in the connections for new, donated lungs.

The problems didn’t end there. His heart and other internal organs were not in the usual spots. They were “mirror reversed,” another effect of Kartagener syndrome. It meant his heart was pointed down and to the right, instead of to the left.

Yet in June 2010, he got the news: He was officially a transplant candidate. Odds of finding a matching donor weren’t in his favor. Nationally, only about 1,500 people receive lung transplants each year.

Clement wanted to have the surgery at the University of Washington, which has been conducting double lung transplants since 1992. But his insurance company said it wouldn’t pay unless he went elsewhere.

He bought a third insurance policy, from the state’s so-called high risk pool. Costing $2,600 every six months, it would help cover the insurance gaps for bills that could total $400,000.

His daughter, Kayla, remembers her dad’s frustration when he arrived home from a medical appointment where someone suggested perhaps he should do “a fundraising thing.”

“I’m not taking money from anyone!” he said.

“That’s fine,” she responded. “You don’t have to.”

Still, Kayla, then 18, thought there might be a way to help.

* * *

Kayla worked a part-time job at Speedway Cleaners in Mukilteo. She asked her boss if she could post a flier with a family photo and put out a donation jar to help with her dad’s medical expenses.

Anna Cornelson, a fellow employee and a friend since they were third-graders at Mukilteo’s Endeavor Elementary School, volunteered to help. They ordered light-blue plastic bracelets inscribed with the words “Breathe for Bob” to draw attention to the cause.

They asked for $5 donations. Many gave more. One customer put $100 on the counter and then came back and plunked down $200 more.

In Lynnwood, Clement’s Alderwood Court customers took a pinch out of their retirement and disability incomes to start a money tree.

Overall, contributions totaled about $4,000.

On Nov. 20, 2010, her dad’s birthday, Kayla asked her mom, Karen, and dad to meet with her in their living room. Her friend Anna joined her.

Her dad remembers how it began. “The first words out of her mouth were, ‘I know you’re going to be mad.’ “

Clement, accustomed to plunking down bills in donation jars for others but never thinking he would need public donations himself, was astonished. “I was deeply touched,” he said.

It came at a time when he was so sick he could barely eat. He slept most of the day.

“I was basically dying,” he said. “I had no energy.

“I was trying to hide it from Karen and Kayla. I was trying to keep a bold face, but I knew what was happening. I knew I wasn’t going to make it much past the first of the year.”

About two weeks later, on Dec. 7, Karen picked up the phone in her home office at 12:55 p.m. The call, from the transplant program, was short and to the point: “Get here right away! We’ve got a perfect match.”

Clement insisted on being behind the wheel. “Would you let your 19-year-old daughter drive or your wife, shaking like a leaf?”

Once he arrived, “they got me in a gown and on a gurney and that was it,” he said. “They didn’t give me a chance to say goodbye to my wife. I told my daughter to be strong and follow what’s right. That was about it.”

“I’m very scared,” he remembers telling a nurse as a blood sample was drawn from his arm. “Pull the needle!” the nurse commanded. “We’re going now.”

* * *

Clement’s surgery lasted about six hours. Dr. Michael Mulligan, director of the UW’s lung transplant program, called it one of the most difficult he’s done.

Much of it was due to the reverse positioning of Clement’s heart and lungs. “You’re trying to transplant normal lungs into a very dissimilar pattern of receiving connections,” he said. “Some of those connections were exceedingly abnormal.”

Transplanted lungs are sewn into a patch of veins at the top of the heart. “One of the veins we needed to connect to on the right side instead came off the left side, looped around, and then came back,” Mulligan said. Every millimeter that something was farther than typical made the surgery that much harder.

To sew in the new lungs, “we had to wait for the heart to beat,” Mulligan said. “Each stitch we took had to be timed to the heart beating and emptying. There was no room to see unless the heart was contracted and empty.”

There was one opportunity to sew each stitch. If just one of them had been imprecise, “it would have been disaster,” he said.

The lung disease Clement had been living with was so severe, “he had no business being as active as he was,” Mulligan said. “Most people would have been wheelchair-bound. They would typically struggle to get from the couch to the kitchen table.”

The fact Clement was trying to work without oxygen “is reminiscent of those guys trying to climb Everest without oxygen,” he said.

Mulligan said he’s not heard of a lung transplant patient anywhere in the world that had Clement’s multiple, overlapping medical problems.

“God intervened and took care of him,” Mulligan said. “Too many things went our way; he responded too well for me to think it was me or our team alone.”

* * *

Clement remained in the hospital for 18 days, discharged on Christmas Eve.

“I was nervous,” his wife, Karen, said. “It was scary for the first couple of days.”

Clement was determined to rebound even faster than expected.

“The man has a will to live and a spirit every human would envy,” said Beth Cornelson, who has known the Clements for years and whose daughter helped with the fundraising.

That very determination made it hard to cope with the his post-surgery restrictions. “I’m not a person to sit around,” he said.

By February, his days had settled into something of a familiar, though mind-numbing, routine. Get up, check blood sugar, take medications, eat, check blood pressure, maybe do a little something around the house.

A friend took him on errands so he could get out. Each day, Clement would walk the dog to the mailbox.

So did he spend part of his day watching and waiting for the mailman?

“No,” he said.

His wife remembered it differently. “Yes,” she said.

By March, he had regained one of his lost freedoms, being able to drive.

He wasn’t allowed to mow, do yard work or work in the garden because of a virus found in the dirt that transplant patients can’t fight off.

During the spring and summer, Clement yo-yoed back and forth from his Mukilteo home to UW more times than either he or his wife remember, sometimes for checkups, sometimes for tests, sometimes with medical problems related to the surgery.

During all of his recovery, he had one goal in mind: Life wouldn’t really return to normal until he was back at work.

One day in June, he told Karen he was ready. “Oh gee, should I let him?” she wondered. Then she reconsidered. “You know best,” she said. “He took off from there.”

* * *

Clement both surprised and shocked his fellow letter carriers when he walked into work on June 6. “Have you lost your mind?” they asked. “Does your doctor know you’re doing this?”

Clement laughed. He had made his goal, three months earlier than doctors predicted.

Despite his determination, his back-to-work schedule sputtered at the beginning, periodically interrupted by problems, such as stents in airways that collapsed and needed to be replaced.

Customers were elated to see that their longtime letter carrier was back on his route. At Lynnwood’s Alderwood Court, he was greeted with hugs and even a friendly, caring peck on the cheek. One woman handed him a present she had saved for him since Christmas.

“He comes home every night with a story about what somebody said or did,” his wife said.

Yet the near-miracle of the surgery didn’t give Clement a totally new life. It came at something of a price, at least for now — one problem gone, another gained.

Clement suffered nerve damage and loss of strength in his legs caused by the surgery and medication. “I don’t have much feeling from my mid-calf down,” he said. He wonders if he’ll ever regain the strength in his legs.

Mulligan said Clement’s problems were caused by the severity of the surgery and the high-dose steroids he had to take after the transplant, which can cause severe muscle loss. He’s confident that special types of physical therapy will allow his strength to improve.

Clement hoped that the new lungs would allow him to return to a time when he could play basketball, racquetball and golf. “Now I can’t swing a golf club, because I’ll fall over,” he said.

Over the past year, Clement has marveled at and silently debated his fate, grateful his life was saved but saddened by the knowledge that, somewhere, another family still grieves.

In September, he wrote the donor family a thank-you letter. Under organ donation guidelines, both the donor family and the recipient can choose to remain anonymous. He may never know who they are.

Remembering their loss, he deflected his wife’s suggestion to celebrate his 50th birthday last month, saying it was just like any other day. He said he would have felt uncomfortable to celebrate. “You know someone didn’t get a birthday.”

But as December, and the first anniversary of the transplant, approached, Clement decided this was an event the family would celebrate, a chance to say thanks to those who offered their support and a time to think about that unknown family “that gave me a second chance.”

The celebration would be a family dinner, he said, and include some holiday shopping.

“We used to go to Seattle every year and walk around Westlake Center and shop,” he said. “I think we’ll try to do that this year. It’s been a few years since we’ve done that.”

One more piece of life’s mosaic back in place. Just a typical family Christmas.

“That would be the best ever,” he said. “Normal.”

Sharon Salyer: 425-339-3486 or salyer@heraldnet.com.

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