Deborah Budge won’t tell you what’s on her grocery list or what her deepest fears are. She won’t talk about her favorite memory or her personal life.

No, Budge does not wear her heart on her sleeve. And her sleeves themselves are covered by the polyester-blend white lab coat she wears every day to work as a cardiologist at Murray’s Intermountain Heart Institute.

What Budge will talk about is her devotion to her job and her belief in its importance. The 37-year-old, who joined the staff of Intermountain Medical Center in 2009, has been part of more than 200 heart transplants during her training and career. For Budge, these numbers are what make up her life. They represent her accomplishments and failures.

“To me, there’s nothing greater than to take somebody that has heart failure to such a degree that they’re incredibly limited and have a short life expectancy and to be able to give them a completely new life,” she says.

But Budge’s impact on those patients goes beyond the physical recuperation. And no two patients know Budge’s personal form of medication better than Dylan Peterson and Mike Mader.

Peterson, who received a heart transplant in June 2010, has worked with Budge constantly since his surgery for check-ups on his heart and speaks warmly of Budge and her sincerity.

“She’ll tell you what’s going on, but she takes more of a motherly approach,” Peterson says. “She tells it to you nicely.”

Mader met Budge in 2010 when he was assigned to her heart-failure group after having more than 18 heart attacks. He received care under Budge’s supervision for nearly three years. After 718 days waiting on the transplant list, he had a combined heart and liver transplant in April 2013. It was the first combined procedure in the Intermountain Region.

“It was always a relief to see Budge,” Mader says. “She’s an incredible person. And I feel extremely fortunate to have had her be a part of my care.”

Mader has continued to have a “good open relationship” with Budge as his doctor. He says her ability to look beyond his heart issues and genuinely care about his personal life made a difference in his medical care.

Both men say if it weren’t for Budge, their stories might not have had happy endings.

And even with a transplant, the health challenges facing heart transplant patients are far from over. Both Mader and Peterson face a lifetime of medication and doctor visits. Still, both men say the checkups are a worthy tradeoff for the uncertainty and gravity of the organ-donor waitlist.

Intermountain Donors Services, Intermountain Medical Center’s partnership for coordinating donations, estimates that the waiting list for a heart transplant is usually at about 50 people. The need outpaces the available organs by more than 25 percent; roughly 35 heart transplants are done in Utah each year, leaving many in limbo.

“There are definitely people who die every day waiting for organs,” Budge says.

• Niki Chan
• Cardiologist Deborah Budge

The Tin Man
Peterson was running toward first base during a 2007 varsity baseball game when he suddenly blacked out.

Peterson’s parents took the Richfield High School senior to the hospital, where doctors confirmed heart failure. He had a ventricular arrhythmia—an abnormal rhythm in the bottom of the heart, which can cause blackouts and sometimes results in death.

It was not a total bolt from the blue. Peterson had been born with a weak heart; at birth, he was diagnosed with idiopathic cardiomyopathy—a weakness of the heart muscle with an unknown origin. It occurs in children younger than 18 in just 1.13 cases out of 100,000.

For 18 years, Peterson had been able to control his condition with medication.

“My heart wasn’t perfect, but it was enough to get by,” Peterson says. “But they realized they wouldn’t be able to stall it forever with medication.”

And now he was in heart failure, where the heart does not pump an adequate amount of blood to support the body.

So doctors put Peterson on the waiting list for a heart transplant.

A few months later, doctors implanted a defibrillator, a special kind of pacemaker, in Peterson’s chest to help in the meantime. It would deliver a shock when his heart experienced anomalous rhythms, like those that caused Peterson to black out.

But despite the defibrillator, Peterson’s abnormal heart rhythms were becoming more frequent. And the longer he waited for a transplant, the higher his risk of sudden death.

On Oct. 24, 2009, Peterson went into cardiac arrest. His defibrillator shocked him 12 times before he reached Intermountain Medical Center, where his heart rate reached 220 beats per minute. He did not leave the hospital after that for nine months.

“He was not going to be stable to just wait for a heart,” says Budge, who worked closely with Peterson during those months.

Less than two weeks later, on Nov. 3, doctors implanted the Total Artificial Heart in Peterson.

Though heart transplants are rare enough, Total Artificial Heart transplants are far more uncommon. On average, there are only 20 patients with the Total Artificial Heart each year across the United States. The two artificial-heart machines available at Intermountain Medical Center are used just once every one or two years. Intermountain Medical Center and its sister hospital, LDS Hospital, have implanted just 13 Total Artificial Hearts in two decades since the Artificial Heart Program began in 1993.

“The heart is the most important organ, so to think that it can be removed and completely taken over by a machine is pretty incredible,” Budge says.

And Peterson’s wait was longer than most. He stands at 6 feet, 9 inches tall, and had to find a heart big enough to support his body.

He was on the transplant list for 681 days; 227 of those days were spent waiting in the hospital.

The time in the hospital attached to the artificial heart machine did not move quickly for Peterson. And it became even more psychologically taxing than it was physically.

“After about the third or fourth month, I realized it was going to take a while for [a heart] to come,” Peterson says. “Every day ... I was hoping something would happen, and then night would come and I wouldn’t have a heart.”

To pass the time, Peterson played video games like Call of Duty online with friends. While he pumped lead into virtual soldiers, the 450-pound artificial heart machine kept his heart pumping with tubes running out of the left side of his abdomen. He nicknamed the machine Big Bertha; he constantly heard its hum and could feel as it expanded his chest to keep his heartbeat stable.

“It kept my heart rate constantly at 140 beats per minute—well, I don’t know if it’s a heart rate; I only had part of a heart,” Peterson says jokingly. But, he says, it was “a comfort knowing that, for the most part, the artificial heart wouldn’t stop beating; I could always trust on it.”

But by June 2010, Peterson’s disposition started to contrast with the weather outside the hospital. As the sun became brighter, he became gloomier. He had been on the artificial-heart machine for 227 days, and he was tired of waiting.

On June 18, Peterson, convinced his stay at the hospital was infinite, was planning to ask his doctor, Rami Alharethi, if he could switch medications so he could stop lugging around a drug drip pole in addition to Big Bertha. He wanted to exchange his intravenous blood thinner Heparin for a pill, Coumadin. Most doctors do not prescribe Coumadin to patients waiting for a heart transplant; it has a longer half-life and can linger in the blood for more time, and excessive blood thinners can cause issues in surgery. But Peterson, who had begun to lose hope for a new heart, was willing to make the change.

Then, at 9 a.m., Alharethi entered Peterson’s room to tell him that he had a donor heart. It was just another 10 hours before Peterson went into the operating room for his transplant; eight hours later, he was out again.

But for Peterson, “time wasn’t moving fast enough. I wanted that heart and I wanted to start my life again.”

• Niki Chan
• Dylan Peterson

The Heartbreak Kid
Mike Mader was born in Las Vegas to 1 in a million odds—the unlucky kind. He was diagnosed at age 4 with familial hypercholesterolemia, a rare genetic disorder that affects both the liver and the heart.

The condition, which occurs in just 1 in 1 million births, is caused by a genetic mutation, of which Mader inherited two copies—both from his mother. His liver lacked a certain gene needed to process cholesterol; as a result, cholesterol built up in the arteries of his heart and, over time, led to coronary disease.

Mader’s mother required a seven-bypass surgery to reduce her cholesterol buildup. Mader’s sister, Katie, is able to manage her elevated cholesterol through statin medications.

But Mader’s body did not respond to the cholesterol medications, and he and his family knew since his diagnosis at age 4 that a heart attack was inevitable.

At times, Mader was on about 25 different prescriptions at once, with limited success. He also ate a selective diet and exercised to remain healthy and stave off cholesterol buildup.

But Mader still had a heart attack—earlier than his doctors expected, and then many more heart attacks; more than they had anticipated.

His first came at age 22, while he was attending Southern Utah University and working full-time for a chemical company as a quality-assurance manager.

Mader was at work when the heart attack arrived. He recalls that he felt sick, and then, he says, “It’s almost like a switch flips in your head. Your body just tells you that something is catastrophically wrong. I just got an overwhelming feeling of doom.”

He went home, told his mom, and was then rushed to the emergency room, where it was confirmed the occurrence was a heart attack.

A month later, he had a second heart attack.

After the second heart attack, Mader skipped two semesters at SUU, but continued to work through five more heart attacks. After his eighth, he quit his job.

“Not being able to work was very difficult,” he says. “There were times when I tried to go back to work and I was just too sick to do it. The cost of living and not being able to work can be pretty stressful at times.”

With each heart attack Mader experienced, doctors placed more stents—ducts made of metal and fabric mesh—in the valves of his heart to allow blood to flow. At age 30, he had 36 stents throughout his arteries.

And as the years wore on, Mader experienced more and more heart attacks, with varying intensities.

Mader had more than 18 heart attacks total—surprisingly, that’s not a record. In 2005, Leslie Hackwell of England had around 32 heart attacks within two minutes and survived, which led many doctors to the conclusion that it is not the number, but rather the severity of a heart attack that matters.

Mader became somewhat accustomed to the heart attacks but no less aware of their seriousness.

“The amount didn’t faze me, as it didn’t matter how many I had survived—it would only take one to kill me,” he says.

Mader moved to Salt Lake City in November 2007 to have lipid apheresis treatments to remove the cholesterol in his bloodstream. The sessions, which occurred as often as once a week, took four to eight hours and involved inserting a large needle in each arm to run his blood through a cleansing machine.

But the treatments made Mader anemic and did not stop the heart attacks.

And with each heart attack, Mader wound up back in the emergency room. “Time is everything if you’re having a heart attack,” he says. “So the faster you can get in, the more likely you are to survive it.”

In summer 2009, while vacationing with friends at Lake Powell, Mader had a severe heart attack. And within two weeks, he had another. He was officially in heart failure—leaving his body without adequate blood flow and necessitating a dual transplant of a heart and a liver.

As a bridge until a suitable donor was found, doctors implanted a defibrillator into Mader’s chest that would administer a resuscitating shock if his heart went into a fatal rhythm.

Mader was shocked three times by his pacemaker during the 2 1/2 years he had it. The third time was during a jog; he says the sensation was so jolting that he thought he had been hit by lightning.

But the pacemaker could not save him from a deadly heart attack—only a transplant could.

“It was horrible to have to wonder if every holiday or birthday would be his last,” says his sister, Katie. “He had been so lucky to survive as many heart attacks as he had.”

The family could not help but feel, Katie says, “that we were pushing our luck.”

Mader was caught in a catch-22. Because of his innate cholesterol buildup, if doctors replaced his liver, he would still have a diseased heart; if doctors replaced his heart, he would still have a malfunctioning liver.

“If someone’s heart failure has a genetic cause, there isn’t any additional treatment that we can do; there’s no genetic therapy,” Budge says. But with Mader, she says, getting a liver transplant could act “sort of like a gene transplant. By giving him a new liver, we were giving him the genes that were then needed to handle the cholesterol.”

It seemed the only option for Mader was a combined transplant of both a heart and a liver—a laborious procedure with a lengthy waiting time. Mader was placed on the transplant list in late 2010 to await a fitting heart and liver.

According to the U.S. Department of Health & Human Services, the median national wait time for a liver is 361 days; it is 113 days for a heart. And Mader needed both at the same time. He also needed a larger heart to support his system, limiting the pool further.

In addition to matching size and blood type to the organ donor, a patient must be adequately healthy to receive a transplant. So to prepare himself to manage two new organs, Mader pushed himself physically. He was not allowed to lift weights, so he focused on cardio. As time went on, Mader eventually found it even difficult to walk on flat ground. Still, he lost 30 pounds before the operation.

It was a silver lining to his otherwise cloudy long wait—718 days.

“Waiting on the list, it’s hard not to count the days that have gone by,” Mader says. “A lot of the waiting period during those three years, I wasn’t really sure if I’d make it. The transplant was the only thing that could have saved me. I had to hold on long enough to get that done. I think, mostly, I just learned how to survive heart attacks.”

His family, meanwhile, had to learn how to survive waiting.

“I felt as though the transplant was never going to happen,” Katie says. “Or that by the time he received the transplant, he was going to be too critically ill and his body wouldn’t be healthy enough to survive the dual transplant.”

She was in constant worry, although Mader showed no obvious physical manifestations of illness.

“Just looking at me, you’d never guess I was having health problems since I wasn’t wearing a full-body cast and everything was internal,” he says. “People just socially didn’t recognize that I was sick.”

But suddenly, on the night of April 22, 2013, Mader had less than a day to wait. A phone call came from the hospital informing Mader they had received a transplant liver and heart from the same donor. Now he was just 17 hours away from entering the surgery room and leaving it with a new life.

“Once I got wheeled into the operating room, things got serious real quick,” Mader says. “At that point, it really hit me. That’s when I got nervous.”

Playing Operation
There are no second chances in a heart transplant. It is literally do or die in the operating room.

“A heart transplant is an exciting thing. It’s also a stressful time until it is actually complete,” Budge says. “There’s always some risk when it’s taken out of the donor that something could go wrong in that process. From the moment we get that donor call, there’s some anxiety until that heart is in and it’s working.”

Mader’s procedure was the first combined adult heart and liver transplant in the Intermountain Region; fewer than 10 are done each year in the entire country.

The operation took more than 12 hours and required the coordination of more than 100 people, Budge says. Calls had to be made. Staff had to meet to determine which operating room and intensive-care unit to use, and to make the decision of which organ—the liver or the heart—would be transplanted first. The actual organs had to be acquired from Intermountain Donors Services, and everything had to happen quickly—the heart can be kept outside of the body, on ice, for just four hours.

On the day of an operation, Budge’s job as a cardiologist is to observe how her patients are responding to the donor heart—which might be more tense than wielding the scalpel. Thanks to medical advances, it’s now relatively uncommon for patients to reject the new heart immediately, but it can still happen.

And despite the initial joy, waking up from surgery is when more risks become real.

When Budge sees the donor heart warmed up and pumping in a patient’s body, she experiences a feeling that she refers to as “a measured amount of cautious relief.” Even after an initially successful heart transplant, the patient still faces the possibility that his or her body will reject the new organ and treat it like a disease.

“The biggest uncertainty would be how long a person will live after transplant,” Budge says.

Risky Business
Within the first year, especially the first six months, a patient is at the highest risk for rejection. Rejection is one of the leading causes of death during that time, according to the National Heart, Lung & Blood Institute; nationally, about 12 percent of heart-transplant patients die because of it.

To control rejection, Budge prescribes immunosuppressant medications as well as aspirin, cholesterol medication, calcium and vitamin D pills. The patients continue to take these pills every day for the rest of their lives, although the doses are periodically lessened with time.

Patients also experience adverse side effects from these medications. The most common side effects are tremors, nausea, high blood pressure and diabetes.

For Mader, yet another adverse effect is the cost of the medications. He is currently raising money on the donation website GoFundMe to help shoulder some of the hefty costs.

The cardiologists at Intermountain Medical Center also test patients for rejection with biopsy monitoring. About 20 or 25 times in the first year, doctors take a small amount of tissue from the new heart to see if it is remaining compatible with the body. This lessens to four times the second year, three times the third year, two times the fourth year and once every year after.

Peterson’s surgery was further complicated by inflammation and scarring because of the artificial heart’s plastic pump, which the body regards as a foreign object. His surgery took around eight hours for operating-room staff to carry out, and he spent 15 days in the hospital recovering.

For Peterson, the worst part of being back on a regular heart was the fear. For the first four months with his transplanted heart, he says, he constantly worried about returning to past heart complications. But over time, Peterson began to trust that the new heart would not fail him.

Mader’s biggest reminder of his survival is in his scars. He estimates there is about 2 1/2 feet of scarring across his body, including a prominent scar resembling the Mercedes symbol.

“The day I got the scars is the day I was given a new life,” he says. “It was a lifelong battle, and the scars are a daily reminder that life is fragile.”

Once the scars have healed, the risk of rejection decreases, but yet another complication arises—the risk of malignancy or complications from the medications, making a heart transplant a lifelong healing process.

“With a transplant, you almost trade one disease for another,” Budge says. “It’s not that transplant is a disease, but it requires all of these medications and monitoring. It’s something that’s there every single day. You can’t ever forget you’re a heart-transplant patient.”

Uncertainty and living day by day is something Budge is reminded of every day. She may not wear her heart on her sleeve, but she wears something awfully close to it around her neck: a thin silver necklace with three circle pendants. It represents “the hardest and also the best time” of Budge’s life, she says.

During her internal-medicine residency years ago, she worked with a group of aspiring practitioners like herself; they all forged strong relationships by learning together.

In 2012, a member of the group, a physician, died “tragically and suddenly,” Budge says. He was a father, a husband and, as Budge recalls, “a prince of a man.”

After the incident, Budge reconnected with some members of the group to remember him. During the memorial trip, she purchased the necklace to wear as a daily reminder that life is short.

The experience, she says, made her realize “how privileged I am to be able to do the work I do helping others.”

Courtney Tanner is news editor at The Daily Utah Chronicle, the student paper of the University of Utah, where Tanner is a junior studying journalism, English and political science.

Organ Donation

• 1 name is added to the national organ-donor waiting list every 10 minutes.

• On any given day, approximately 3,000 people in the United States are on the waiting list for a heart transplant. About 2,000 hearts become available in the average year.

• An organ donation is possible only when someone is declared brain dead (sometimes after a cardiac death). Brain death is not common, and thus useable organs are rare. The person also has to be registered as a donor. This is the case in only 2 percent of deaths.

• 1 organ donor can potentially save 9 lives.

• 70 percent of eligible Utahns are registered as organ donors.

Sources: The U.S. Department of Health & Human Services; the National Heart, Lung, and Blood Institute; Yes Utah; Intermountain Donor Services

Becoming an Organ Donor

•Register on YesUtah.org or check the box when renewing or applying for a Utah driver’s license.