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'God had me in the palm of his hand'

Tom White speaks almost reverentially about the moment, lying there on the concrete, his shirt torn open and a crowd around him.

He'd been through it before: The medics with the metallic pads, the jolts to his chest, the concerned looks from nearby people with their normal, working hearts.

He heard a voice.

"We're losing him."

White turned to a nearby medic.

"Tell my wife and kids that I'm praying for them," he said.

The medic tried to reassure him. He grabbed her arm and made her promise to relay the message.

"I never knew if that's the last time," says the 60-year-old White now, a full 21/2 years removed from a heart transplant surgery that has the retired teacher running, swimming and smiling - all worry free.

"I just knew that God had me in the palm of his hand."

'It just dropped

me to the ground'

Tom White's heart was quite literally disintegrating, and no one could do anything about it.

He knew something was wrong by the time he was a teenager. A 19-year-old soccer player for a university in upstate New York in the late 1960s, he could feel it, and when doctors told him he couldn't play for the school team, he did a very teenager thing: He joined a city club team.

Throughout the 1970s and 1980s, White worked and played and raised a family without any noticeable symptoms, at times putting in 10 miles of running and two miles of swimming each day.

But inside his chest, his own cells were working feverishly against him.

The genetic disease White inherited - arrhythmogenic right ventricular dysplasia - is as dangerous and painful as the name is long. The muscle of the heart's right ventricle is replaced by fat and fibrous tissue and the ventricle then cannot contract normally, creating abnormal heart rhythms.

This short-circuitry in the most vital organ accounts for up to one-fifth of sudden cardiac deaths in people 35 years of age or younger.

For White, it wasn't a problem; he once enjoyed a seven-year stretch with no symptoms at all. It wasn't an issue until 1994 - some six years after he and his family moved to Sequim -- when his world came crashing down.

He even recalls the experience as he picked up a handful of twigs to toss into a fire near his home on Taylor Cutoff Road.

"It just dropped me to the ground," White recalls.

After that, doctors went to drug therapy and, when that proved ineffective, they put in a defibrillator in 1996.

So began a 10-year stretch that saw White absolutely thrown down (quite literally) at a moment without any real rhyme or reason. One day, lifting heavy objects was no problem, he says, but brushing his teeth would set of a revolution in his heart that accelerated his heart rate from 72 beats per minute to 350.

"I got so many ambulance rides, I knew all the drivers," White says.

The attacks would come at the worst times - once at a parent-teacher conference - and it forced to him to give up coaching girls soccer and track-and-field teams in Sequim.

"That was the hardest thing to do," White recalls."I was just too sick to keep going."

Eventually he gave up his special education teaching position in Sequim's schools.

White's one real hope was for a heart transplant. In any given year, 2,600 Americans await a heart transplant, according to Donate Life Today.

Since transplants must be made immediately and any number of tests - compatible heart size, compatible blood type, etc. - can negate a potential patient, several recipients on a donor list in any particular region will be called when a heart becomes available.

In that 10-year stretch, White was called in four times, waiting hours on end and going through the preparations - only to be told that he was out of luck.

"An emotional roller coaster," White describes it.

"It was devastating for me and my family. I guess you could say ... I was sent home broken-hearted."

It seemed to White that his end might come there, on the side of U.S. Highway 101, as he lay there sending what he thought would be his final words, a blessing to his family.



The fifth

time's a charm

Fast-forward to early 2007. Down but not defeated, White tried to keep exercising to keep his spirits up. He resigned himself to living with a faithful but genetically bad heart.

Then a call came through at about 11 p.m. on Jan. 23. The nurse on the other end of the line asked him to come in.

White admits now he wasn't looking forward to another long trip to Seattle, to get worked up physically and emotionally for a transplant that wouldn't happen.

"I think you better come this time," the nurse told him.

It was a crisp winter night, White recalls. He raced to Kingston and hopped the next ferry - workers held up the ferry for him personally - and sped gleefully toward Seattle. He even pushed past the speed limit a couple of times on his way, hoping to get stopped by a police officer just to be able to tell him the story.

Fate, God, circumstance or something else had another plan, and that was to get him to the hospital, pronto; he didn't run into any law enforcement that night.

It seemed the stars were aligned for White that night: The first two potential heart recipients weren't good fits for the available organ.

But he was.

As he and family members awaited the surgery, his daughter Kris filled out the nearby dry-erase board near his bed, the one set aside for a patient's goals for the day. It read, "1. Get a heart. 2. Homecoming dance decorations."

Somewhere on the other end of that Seattle hospital, while White and his loved ones were celebrating, someone else's family was saying goodbye.



Roberto's gift

As fortune smiled upon Tom White that evening, it turned away from a family visiting a man named Roberto, who was set to be released that evening. Before he could be discharged, Roberto suffered a stroke and died.

Fortunately for White, he was an organ donor.

Doctors moved swiftly, as they must, testing the heart again and again to see if the transplant would have an overwhelming probability of success. They proceeded to fit Roberto's still able heart into White's chest.

Some transplants simply don't work and it can be six months after that a body rejects the organ. But this one was a good fit. White was in the hospital for a month. Although he suffered some setbacks with sleep deprivation and fatigue that comes with moving about too much, he managed to get back quickly to what he wanted to do but felt he couldn't before.

Three months after the surgery, he stood atop Mount Zion.

"I was just determined I wasn't going to waste a minute," he says.

Now he can swim again, up to a mile now, and bike ... and on good days, do both. He still takes medicines, and even more medicines to fight off the side affects of those, and now has biopsies every six months or so, but Roberto's heart still seems to work fine.

"I weigh what I weighed in high school," White reveals.

Besides thanking God, White wanted to make sure this gift didn't go unappreciated. Like other transplant recipients, he filled out a form that is sent to the donor's family asking to see them, if the family wishes.

His family, who called him Robert, said yes.

In August 2007, on the first birthday since Roberto's death, his family hung two signs. They read, "Happy Birthday, Robert" and "Welcome Home, Tom."

White still gets misty-eyed talking about it.

"The hard part of being a transplant patient is, he didn't die for me," White says. "Grief is knowing ... this family that's been so generous ... is grieving. That was real helpful for me. I didn't know how helpful it would be (for the family). An incredible feeling, a sense that (it's) a real gift."

It's a gift he now can celebrate with his children - Zach, 27, Kris, 25, and Sarah, 21 - and friends.

White volunteers as a speaker on behalf of Donate Life Today, the organ donor registry arm of the Living Legacy Foundation at LifeCenter Northwest. LifeCenter coordinates all transplants in Washington, Alaska, Montana and northern Idaho.

In recent weeks, he's talked with groups at Sequim Community Church and Sequim High School, promoting the simple act of checking the box on the driver's license that emerges as a bright, red heart on one's laminated card.

Checking that box means one is giving legal consent to donate all organs and tissues for both transplant and research. Consideration is given first to lifesaving or enhancing transplants, but if no compatible recipient is found, organs and tissues may be used for research.

"That's what I do now, I talk about it," White says with a grin.

That's what he does. He talks ... when he's not out living life.



Reach Michael Dashiell at miked@sequimgazette.com.





Donating life, one part at a time

Organs

The organs of the body that can be transplanted at the current time are kidneys, heart, lungs, liver, pancreas, and intestines. Kidney/pancreas transplants, heart/lung transplants and other combined organ transplants also are performed.

Organs cannot be stored and must be used within hours of removing them from the donor's body. Most donated organs are from people who have died, but a living individual can donate a kidney, part of the pancreas, part of a lung, part of the liver or part of the intestine.

Local organ procurement organizations around the country coordinate organ donation. These groups evaluate potential donors, discuss donation with surviving family members, and arrange for the surgical removal and transport of donated organs. A national computer network, the OPTN (Organ Procurement and Transplantation Network) matches donated organs with recipients throughout the country.



Tissue

Corneas, the middle ear, skin, heart valves, bone, veins, cartilage, tendons and ligaments can be stored in tissue banks and used to restore sight, cover burns, repair hearts, replace veins, and mend damaged connective tissue and cartilage in recipients.



Stem Cells

Healthy adults between the ages of 18-60 can donate blood stem cells.

For a blood stem cell transplant to be successful, the patient and the blood stem cell donor must have a closely matched tissue type or human leukocyte antigen (HLA). Since tissue types are inherited, patients are more likely to find a matched donor within their own racial and ethnic group.

Healthy volunteers can donate three sources of blood stem cells:

• Marrow - This soft tissue is found in the interior cavities of bones and is a major site of blood cell production. It is removed to obtain stem cells.

• Peripheral blood stem cells - The same types of stem cells found in marrow can be pushed out into a donor's bloodstream after the donor receives daily injections of a medication called filgrastim. This medication increases the number of stem cells circulating in the blood and provides a source of donor stem cells that can be collected in a way that is similar to blood donation.

• Cord blood stem cells - The umbilical cord that connects a newborn to the mother during pregnancy contains blood that has been shown to contain high levels of blood stem cells. Cord blood can be collected and frozen for long periods and, therefore, offers another source of stem cells available for transplanting into patients.



Blood and platelets

Blood and platelets are formed by the body, go through a life cycle, and continuously are replaced throughout life. This means that you can donate blood and platelets more than once.

It is safe to donate blood every 56 days and platelets twice in one week up to 24 times a year.

Blood is stored in a blood bank according to type (A, B, AB, or O) and Rh factor (positive or negative). Blood can be used whole, or separated into packed red cells, plasma, and platelets, all of which have different lifesaving uses.

It takes about 10 minutes to collect a unit (one pint) of blood, although the testing and screening process means that you will be at the donation center close to an hour.

Platelets are tiny cell fragments that circulate throughout the blood and aid in blood clotting. Platelets can be donated without donating blood. When a specific patient needs platelets, but does not need blood, a matching donor is found, and platelets are separated from the rest of the blood, which is returned to the donor. The donor's body will replace the missing platelets within a few hours.



Source: Health Resources & Service Administration/U.S. Department of Health and Human Services



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