In 1997, Ronald Westgate was an active 59-year-old living with his wife Mary in Pleasanton, CA. “My father’s side had a history of heart failure. My father and grandfather both died of heart attacks in their fifties,” explains Ron. “I kept in shape because of that, a lot of exercise, biking, hiking, you name it.” In the years to come, genetics would prove a stronger force for Ron and his two brothers, Jim and Chuck, also of Northern California. By 2006, all three brothers would undergo heart transplants at Stanford Hospital & Clinics.
Familial cardiomyopathy, a form of inherited heart disease, often leads to heart failure. Heart failure affects nearly 5 million U.S. adults, with an estimated 400,000 to 700,000 new cases each year. In the case of cardiomyopathy, the heart muscle loses the ability to pump blood effectively. Cardiomyopathy is progressive and sometimes worsens fairly quickly. While there are a number of medications that can slow cardiomyopathy’s progression, some patients require a new heart to survive.
Journey to a New Heart
In 1998, nearly one year after Ron noticed he couldn’t exercise as much as he used to, his heart had begun to fail. The year was spent in and out of John Muir Clinic in Walnut Creek. As Ron’s condition deteriorated, Dr. Fowler, a cardiologist at Stanford Hospital & Clinics took over his care. His treatment included having a defibrillator implanted in his chest to reduce the risk of sudden death.
“My heart had become so weak, it was in real danger of stopping,” says Ron. “The defibrillator would fire—there would be these storms of it going off.” With the defibrillator doing all it could to keep Ron alive, it became clear that he would require a new heart. After spending days at John Muir Clinic, the Stanford Hospital LifeFlight helicopter was dispatched by Dr. Fowler to bring Ron to the hospital, where he would wait for a heart transplant.
“Ron was the worst,” says Chuck Westgate, one of Ron’s younger brothers. “He was on a left ventricular assist device for a while, just a survival situation.” The Westgate brothers rallied around Ron, and were there when he finally received his heart.
“I still remember that first breath,” Ron recalls. “My breathing before the transplant was so shallow; I was too weak. But that first breath, it was the first time in months that I got a lung full of air.” Ron’s condition steadily improved, though he did experience some rejection of the organ.
All patients who have a heart transplant are vulnerable to their own immune system putting up a response to the new organ. Most require more than one immunosuppressive drug for the rest of their lives.
One Recovers, Another Heart Fails
Jim watched his brother recover from his transplant with an additional level of trepidation. “My heart failure started in about 1998. I had a minor heart attack. That was an alert for us,” Jim explains. “I went through the typical process— getting a pacemaker and defibrillator after Ron had his transplant. That told us that we were getting pretty close.”
Jim began seeing Dr. Fowler as well, who put him on the transplant list in early 2000, hoping to prevent the rapid decline Ron endured before his transplant. But Jim’s case would have an additional complication. On his 37th wedding anniversary, while Jim was undergoing testing for a new heart, doctors had found a mass on his kidney.
“That was really our lowest moment,” admits Jim. “More than two years earlier, I had had melanoma. They thought the mass on the kidney was a malignant tumor; they had to go in and take it off.”
The prospect of cancer returning was deflating, not just because of the obvious risk cancer presents. If Jim lost his kidney entirely, his body might not be able to handle the immunosuppressive drugs he would need to take after his transplant. If he kept the kidney, he would have a harder time beating the cancer, and would still need to be cancer-free for three years before he became eligible for a heart transplant. Jim didn’t have that kind of time.
Jim received prayers from across the Christian ministries he’d been involved with for more than a decade. One week later, those prayers were answered—Jim’s kidney was spared and the mass on the organ turned out to be benign. He would be able to go forward with the transplant. On August 4, 2000, Jim left Stanford Hospital with a new heart. He credits his successful outcome with the teamwork the Hospital staff displayed while he was there. “I never felt like there was just one person making decisions for me,” says Jim. “I nearly died twice in Fresno because my cardiologist wasn’t talking to my family doctor and it almost cost me my life. Seeing how much was done by team was the most comforting thing for both Nancy and me.”
A Family at Risk
Chuck Westgate was there for his older brother Ron’s transplant, and again for his twin brother Jim’s. As Ron and Jim got back on their feet, Chuck knew he needed to keep a close watch over his own heart health. Three years passed without incident, and it seemed like Chuck might avoid the troubles his brothers endured.
“I saw Ron go through it and then Jim went next; I thought I would go through the same thing, says Chuck. “The help for me was that I’d seen what they went through, it prepared me.”
In 2003, Chuck was in Poland on a mission trip with his church. Like his brothers, Chuck has a very strong spiritual side; he has been a pastor for 37 years. During the second week of the trip, Chuck experienced heart failure. He was treated in Poland, and had a defibrillator implanted when he got back to the states. Two years later, Dr. Fowler added Chuck’s name to the transplant list.
“Mentally, I was ready to accept a heart. I knew that yes, I would,” Chuck says. He knows what a difficult decision it is to accept a transplant. Many recipients deal with guilt after a transplant. Stanford Hospital provides support groups for transplant patients where they can discuss their feelings. Additionally, a team of social workers meets with patients and their families, facilitating the difficult emotional process each side experiences.
Celebrating Life
Chuck, just over a year out from his transplant, is still benefiting from the follow-up care he receives from Stanford. “I have a terrific follow-up nurse. She answers questions and chews me out when she needs to,” admits Chuck. “You need that at times; you need a kick in the pants. All of us have a great appreciation for her and everyone at Stanford Hospital, we give them an A+, that’s for sure.”
In the fall, Stanford Hospital will welcome heart transplant patients and their loved ones to a celebration of life at the annual heart and lung transplant patient reunion. The tradition began 20 years ago when Stanford Hospital social worker Mary Burge arranged a potluck dinner for about a dozen patients who’d received transplants and an equal number of people on the transplant waiting list. Since that time, the reunion has grown. This year the Hospital expects to host 200 people at the reunion.
40 Years and Looking Forward
Forty years ago, a 54-year old American steel worker spent the final two weeks of his life with a donated heart pumping in his chest. The first successful adult heart transplant in the U.S. had been completed by Dr. Norman Shumway and his team in the cardiothoracic surgery division at Stanford Hospital. The event was the culmination of more than a decade’s worth of research, finally translated into a therapeutic option for patients with end-stage heart failure.
In the 20 years that followed that first procedure, researchers and clinicians at Stanford continued to make steady progress in all areas of heart transplant, including efforts to increase the donor pool, improve organ preservation and heart biopsies and advance development of drugs to prevent rejection of the transplanted organ. In late 1980, the Stanford team was the first to introduce cyclosporine for heart transplantation. The availability of this immunosuppressive drug, which is still in use today, was a giant leap forward for the field.
“The first successful heart transplant in the country took place only 10 years after Stanford Hospital opened in Palo Alto,” said Dr. Robert Robbins, current chair of the Department of Cardiothoracic Surgery at Stanford who trained with Dr. Shumway. “As Stanford Hospital looks to the future with the construction of a new facility, patients in Palo Alto and beyond will benefit from the discoveries Hospital clinicians will make in the years to come.”