Boisean has bittersweet wait for heart transplant

Rick Brittell has had a diagnosed problem with his heart since he was 28. Idiopathic cardiomyopathy is what the doctors call it. They really didn’t know why his heart muscle was weak, but one of his cardiologists at the time predicted a change of heart down the road. “You will need a heart transplant in 25 years or so,” he said.

He was right.

A year ago, Brittell’s breathing was so labored that doctors in Utah took him into emergency surgery to put in a left ventricular assist device, or LVAD. The machine is miraculous, he said. He can breathe easily and walk far beyond the 25 steps from his bedroom to the kitchen, which used to be his limit. The device does more than help his heart muscle — it has taken over most of the work. For Brittell, it is a bridge to a transplant.

It’s a numbers game

Brittell is on the heart transplant list at the University of Utah. For the first 30 days, he was at the top of the list. But, without a donor during the first month, he dropped to third. That was on May 10.

A smaller and more durable LVAD device that was approved by the U.S. Food and Drug Administration in 2012 is doing such a good job at keeping people alive that the heart transplant list is growing. According to the Organ Procurement and Transplantation Network, 55.9 percent of people on the transplant list will receive a donor heart within a year. At 12 months, 27.5 percent are still waiting and 8.7 percent have died. There are 3.5 heart donations for every 1,000 deaths.

The procurement process is regional, so Brittell still has a fighting chance.

While he waits, Brittell and his wife, Susie, have settled into an apartment 3 miles from the hospital. To keep busy, he visits other intensive care patients who soon will have an LVAD of their own. Though Brittell finds people at their worst — some can barely breathe— he is a walking example of what the mechanical pump can do.

Susie also keeps busy around the hospital. She’s been tending to a 19-year old who suffered heart failure in her last month of pregnancy. Miraculously, a donor heart came through for her on Mother’s Day.

A history of heart trouble

Brittell was 12 when he first felt heaviness in his chest. He could not catch his breath.

“My heart hurt,” he said. That feeling, that difficulty catching his breath, resulted in a diagnosis at 28.

His heart sometimes felt as if it was racing out of his chest. He couldn’t breathe. By the time he got home from work he was exhausted. His doctor sent him to Stanford University School of Medicine to see whether anyone could figure out what was wrong. “People looking at me would have said there was nothing wrong with me,” he said.

A scan showed he had an enlarged heart. A biopsy confirmed that his heart muscle was damaged. He swallowed about four heart pills a day but still had biweekly blackouts or near-misses. Despite the symptoms, he said he missed only four days in a 40-year career in drafting, surveying and building maintenance.

Doctors got more aggressive with his medicines, but his health wasn’t getting any better. His personal life was about to take a turn for the worse, too. He got married at 18 and had four children in the span of a decade. He divorced in 1998 and found himself living in his pickup with all his worldly possessions packed into an orange crate. He bought a sleeping bag at a garage sale for 50 cents. He showered at a local school an hour before the children and teachers arrived.

It was during his truck-sleeping days that his doctors told him he needed a new heart valve. During the surgery they patched up an aneurysm on the backside of his aorta.

While he was hospitalized, cards poured in from friends in a divorce recovery group. One of those cards was from Susie, who eventually became his wife and unofficial nurse. From the beginning of their marriage, hospital stays were almost as common as annual vacations. They have a good sense of humor about it, and can tick off the medical anomalies that led to each admission.

There was the ablation in 1999 when his heart was racing at 240 beats a minute.

The next year he had a silent heart.

And there was Christmas 2002, when he developed a flesh-eating bacterial infection on his face. “It kind of ruined our Christmas Eve party,” Brittell said.

He suffered a stroke in 2005 and was paralyzed on the right side of his body. It happened on a Saturday and he was back to work on Monday, he said.

He even had a rare obstruction of his bowel that required surgery.

Doctors eventually installed a pacemaker. Still, he was passing out often enough at work that he had to go on disability. He was on around-the-clock oxygen and his heart rate was still erratic – jumping from 35 to 75 beats a minute. The blood pumping from his heart was stalling. He would take 50 steps and feel as if he’d walked 2 miles. He could barely talk before gasping for air.

At that point, his cardiologist said that it was time to see whether he was a candidate for a left ventricular assist device. Twenty minutes later, Brittell and his wife would add another hospitalization to the list. It was May 16, 2014.

A temporary solution

After a five-hour surgery to implant a LVAD, he woke up in a recovery room looking like hell, Susie said, but feeling amazing. “I could breathe. This is what it’s like to be normal,” he said.

Dr. Craig Selzman, surgical director of the Mechanical Support and Heart Transplantation at the University of Utah, said some patients can use the improved LVAD indefinitely. Technically, LVADs can hold up for 10 years, which might be OK for older people. But younger heart failure patients need to get away from a mechanical device and have a healthy beating heart.

The University of Utah performs between 15 and 20 heart transplants a year, said Dr. Josef Stehlik, medical director of the Heart Transplant Program. The program, which started in 1985, is affiliated with Saint Alphonsus Regional Medical Center in Boise. It serves a geographical region that includes Idaho, Montana, Wyoming, Nevada and New Mexico.

If Brittell is lucky enough to get a donor heart, he will take medication to prevent his body’s immune system from rejecting the foreign organ. He’ll remain in Utah for six months to ensure that the medicines are working and that the organ remains viable.

“He is a young man and our strategy is to do a transplant,” Stehlik said.