Skip Boldt recalls the day he died.
He was on a job, installing a water softening system.
"There was water all over the place," said Boldt, a plumber. "I felt nervous, but I kept working."
As he toiled in the water, his condition deteriorated. Not able to handle too much stress, Boldt's ailing heart stopped beating. The defibrillator -- a device implanted in his chest to detect heartbeat abnormalities and shock them back to normal -- picked up the rhythm changes too late, and Boldt lost consciousness.
"I was dead," he says.
The defibrillator, sensing the stillness, kicked in a few seconds later. It shocked him once -- nothing. A second, stronger jolt of electricity revived his motionless heart.
Without fear or alarm, Boldt describes regaining consciousness.
"I looked up and my first thought was, ‘Oh I didn't finish the job,'" says Boldt. "I was glad I wasn't found like that. I didn't look too good. I looked pale. I looked dead."
But that's Skip Boldt. He puts others first, especially his wife Julie and children, Heather and Austin; he takes pride in his work; and he's self-reliant.
Hanging onto these principles is tough when you're living with heart disease.
"I used to be the rock," says Boldt. "The hardest thing is having to ask for help."
Boldt's condition, diagnosed in 2000 after years of dizziness, fainting and fatigue, is called hypertrophic cardiomyopathy or HCM. The disease is marked by a thickening of the heart wall, which obstructs blood flow. The American Heart Association reports that one in 550 people have the disease. In most cases symptoms are undetected or controlled by lifestyle changes, medication, internal defibrillators, surgery or a combination of treatments, and patients are able to lead a normal life.
In a handful of cases, patients, like Boldt, don't respond to medication or traditional therapies, and the heart's function continues to deteriorate to the point of sudden death heart failure.
Boldt's disease is compounded by erratic, disorganized impulses, or fibrillations, of the heart's four chambers. When Boldt feels the two upper chambers - the atria - flutter, he's rushed to the emergency room.
"My hands get cold, my body shuts down," says Boldt.
At the hospital, he's sedated and shocked with a defibrillator to regulate his heartbeat. The defibrillator's high output of electricity leaves burn marks on his chest.
On the other hand, Boldt's internal defibrillator controls beat irregularities of the lower chambers or ventricles.
"If the lower chambers stop, I'm dead if my defibrillator doesn't work when I need it to work," says Boldt. "Is it going to happen? Yeah. I just don't know when."
Hope is forthcoming. A letter dated Nov. 29, 2004 contained promising news. UNOS, the United Network for Organ Sharing -- responsible for matching organ donors with patients - accepted Boldt as a heart transplant candidate and registered him on the national organ transplant waiting list.
"It's something special for me, but (it's) someone else's tragedy." says Boldt. "Everything in life is a double-edge sword."
Boldt joins 3,306 other Americans waiting for donor hearts; 73 of those patients are Arizonans.
"When we found out, we were happy and sad at the same time," says Boldt's wife, Julie.
"One thing that bothers us is that someone has to give a life to save Skip's life," says Julie. "We will not be able to contact the donor's family. We would love to give them our love, but we can't unless they want to contact us."
The transplant process is physically, psychologically and financially arduous.
"Getting a heart transplant is not a cure, it's a possibility for a better life," says Boldt. "To become a heart transplant recipient, you have to have a plan."
"If you're too healthy, they won't accept you. If you're too ill they won't accept you. You have to be mentally ready," adds Julie.
UNOS, together with the hospital, require patients to determine payment methods, emotional and physical support networks, and caretaking arrangements before and after the operation.
Boldt's surgery could keep him away from Payson and his family for as long as a year and a half, and the procedure could cost up to a half-million dollars.
When Boldt's name reaches No. 1 on the transplant list for this region, he'll have to close his business, Pride Plumbing, and move to within three hours of the University of California San Diego Medical Center.
"You walk out that door and you don't know when you're coming back," says Boldt, who will stay with family and friends in Orange County where he'll wait for the call that lets him know a donor heart is ready.
"I'll probably be scared," says Boldt. "You talk about emotions going through my head. I could see myself being a basket case."
After the call, Boldt will travel about 100 miles south to UCSD Medical Center, and within a few hours, he'll be on the operating table.
After the surgery, Boldt must live near UCSD for a minimum of three months, though complications could extend his stay until he is well enough to return to Payson.
The operation is a significant expense. According to Emory University's Heart Center, the procedure can cost in excess of $400,000. To prevent complications patients -- for the rest of their lives -- will spend up to $2,000 a month on medication that helps their bodies accept the new organ.
Although most insurance companies, like Blue Cross/Blue Shield of Arizona, cover between 70 to 80 percent of transplant costs, patients still shoulder $80,000 to $100,000 of out-of-pocket expenses, not including travel and pre- and post-operative housing costs.
And since the Boldts live on a middle-class income, they won't qualify for Medicaid or other federal funding. Instead, they'll have to rely on Julie's insurance from her job at Payson High School, and whatever other resources they can scrape together.
"With him not working, I don't know how we're going to do it," says Julie, PHS cafeteria manager. "I'll have to get a second job to pay for expenses."
Living with a serious heart condition, and preparing for a transplant surgery are life-changing experiences, says Boldt.
"My wife is really strong, but you never know.
"I fear for my wife and kids. I worry for them if something happens to me. My wife will have to deal with my death, debt and bills."
In the meantime, life is anything but normal for Boldt. He follows a restricted diet to prevent added strain on his heart. He's also been zapped by his internal defibrillator accidentally. "It feels like you stuck your finger in a socket, but it's your heart."
He takes a half-dozen medications a day, and he struggles with overwhelming fatigue caused by his illness.
"My son likes sports, and I can't do anything but throw the ball, and even then I get tired."
And although Boldt scaled back his workload, he's still on the job to support his family.
"I love what I do. I never had to rely on anybody. I used to do whatever it took," says Boldt.
A non-smoker and non-drinker, the once physically fit 215-pound, 6-foot plumber lugged heavy pipes, water heaters and wrenches for 19 years. Now, much lighter from his illness, a bag of groceries can be too much weight for Boldt to carry.
"I get tired trying to make a living," says Boldt. "If I were to do a portion of what I used to do, I'd be dead."
Boldt's down-to-earth attitude keeps him grounded.
"There are a lot of people worse than I am," says Boldt. "Yes, I'd like to be normal, but who wouldn't? Do I feel cheated? A little bit. But on the other hand, look at all these other people who've got it worse. I want to see my kids grow up. I want to spend the rest of my life with my wife."