Updated 4 yearss ago
Tonya Cajuste had just finished breakfast one Sunday morning and was getting ready for church when she began feeling ill.
What she thought was a bad case of indigestion turned out to be more serious; her aorta had partially separated from her heart wall. Just a few months before, she says, a physical exam had indicated that "everything was great."
Despite several surgeries, her heart continued to deteriorate until it was functioning at only 10% capacity. "My doctor came in after my last surgery and said, ‘There's nothing else we can do for your heart. Your only option is a heart transplant,' " says Cajuste, 43.
Within days, Cajuste, who lives in West Palm Beach, joined some 250 other Floridians — the average daily count — on a waiting list managed by the United Network for Organ Sharing. The private, non-profit organization is exclusively responsible for distributing all donated organs nationwide, including hearts, kidneys, lungs and livers.
UNOS, organized regionally, uses an extensive database to match organs that become available with transplant candidates. The sickest candidates go to the top of the list.
Hearts for transplantation can't be taken from patients after they've been declared dead — only from those who are technically alive but have been declared brain dead and are no longer on life support. Once removed from the donor, a heart is immediately chilled in solution, placed in a cooler and rushed by a special transfer team to an airplane or ground transportation.
The durability of a heart once it's outside a body — what doctors call the "cold ischemic time" — is 200 minutes or less, says Dr. Daniel Yip, a cardiologist with Mayo Clinic in Jacksonville. "That seems to be the cutoff. In cases where it's more than 200 minutes, the outcomes are not as good."
Demand for hearts outstrips the supply. Some heart transplant candidates, especially those with rare blood types like AB negative, remain on the list for months. Some never make it off the list — about 8% of the 3,000 patients awaiting transplants at any given time in the U.S. die while waiting for a donor heart. That mortality rate, however, is down from 17% a decade ago, according to the U.S. Department of Health and Human Services.
Cajuste was fortunate. Just 24 days after being placed on the Region 3 waiting list, she was matched with a donor. Now, more than six months since her trans plant, Cajuste says she is doing well and enjoying her new lease on life.
Cajuste's surgery took place at Tampa General Hospital, one of seven hospitals in Florida that conduct heart transplants. On average Tampa General performs about 50 heart transplants a year and is among the busiest hospitals in the nation for the procedure, says Dr. Benjamin Mackie, one of Tampa General's newest transplant cardiologists.
Mackie was not born when Dr. Christiaan Barnard performed the world's first heart transplant in South Africa in 1967. In the 48 years since, the science of heart transplantation has made enormous strides, with an average of 2,100 procedures annually in the U.S., and some 5,000 worldwide. The number of people living with a transplanted heart nearly doubled between 1998 and 2009, to more than 20,000.
New drugs that suppress the body's efforts to reject the new heart, along with advances in mechanical heart-assist devices, have improved post-operative survival rates significantly. "Today, our one-year survival rate is at 90%," Mackie says. "And after surviving the first year, an adult patient's survivability goes way up to 14 years and beyond."
There have been non-technical advances as well, including a recognition of the value of a team approach among doctors, nurses, psychologists, social workers and family support members, say Drs. Nirav Raval and Scott Silvestry with Florida Hospital in Orlando.
At first, doctors considered the team approach a "nice thing to do." After they looked at outcomes, however, "it became almost mandated," says Raval, medical director of thoracic transplant at the Florida Hospital Transplant Institute. "And rightly so. It just keeps getting better and better."
Dr. Daniel Yip of Mayo Clinic in Jacksonville says once a heart is outside a body, doctors have 200 minutes at most for an optimal outcome. "That seems to be the cutoff. In cases where it's more than 200 minutes, the outcomes are not as good."
Mackie's boss at Tampa General, Dr. Debbie Rinde-Hoffman, says recent advances in Ventricular Assist Devices, or VADs, have had the biggest impact on the field of heart transplantation. Once the size of a dishwasher, today's battery-powered VADs, basically mechanical heart pumps, have been miniaturized to the point where they will fit into a fanny pack.
The devices are used to help very sick patients get healthy enough to withstand the transplant procedure. "Ventricular devices have been a real game-changer," says Rinde-Hoffman, medical director of Tampa General's Cardiac Transplant Program, who has been performing heart transplants since 1991.
The VADs create a challenge as well, however. Dr. Thomas Beaver, chief of thoracic and cardiovascular surgery at UF Health in Gainesville, says that while heart transplantation surgery itself is "basically the same," the patients tend to be sicker.
Beaver explains that a decade ago the typical heart transplant patient had never had heart surgery before, but "now the majority of transplant patients we see in surgery have had a prior bypass, or valve surgery, and, more commonly, have been on a mechanical assist device."
Cardiologists say one aspect of heart transplantation has remained constant. To transplant a still heart from one human being into another and re-animate it is one of medical science's most profound achievements — what Mackie calls "the most amazing process I've ever been involved in during my entire medical career."
To protect the privacy of the donor's family, heart transplant recipients receive only basic information about the source of their hearts. Cajuste says she knows nothing more than that her donor was a 27-year-old female. Families of donors and recipients who wish to contact each other must make a written request through an organization called LifeLink, a federally designated organ recovery organization that works with hospitals and donor families to promote and facilitate organ and tissue donations for waiting patients. Both parties must agree before being put in touch. Cajuste says she "definitely" wants to make contact with the donor family but intends to wait. "I'll know when it's the right time."
Pediatric heart surgeon Dr. Mark S. Bleiweis of Shands Hospital (right) is considered a world leader in use of the Berlin Heart, a mechanical device for infants with congenital heart disease.
"The children we put on the Berlin Heart have no other options," says Bleiweis. "The likelihood of them making it to transplantation is near zero."
The Berlin Heart prolongs an infant's life and gives them an 80% better chance of surviving long enough that they can receive a donor heart, he says.
"I've operated on numerous small babies that weigh less than 2 pounds," Bleiweis says. "That's pretty amazing. There are things we're doing today for pediatric heart patients that we would never, ever have attempted 10 or 15 years ago."
Ventricular Assist Device
An electromechanical device implanted in patients that partially or completely replaces the function of a failing heart.
Dr. Christiano Caldeira attaches a Ventricular Assist Device to a patient at Tampa General Hospital earlier this year.
VADs are used to help very sick patients get healthy enough to withstand the transplant procedure. "Ventricular devices have been a real game-changer," says Dr. Debbie Rinde-Hoffman, medical director of Tampa General's cardiac transplant program. She has been performing heart transplants since 1991.
The Future of Heart Care
Dr. Mark Bleiweis
Cardiac surgeon, University of Florida College of Medicine, Shands Hospital, Gainesville
"I feel much more confident today about the future of heart transplantation and the next wave of technology. Three dimensional printing of organs is a very exciting field of study that's advancing rapidly."
Dr. Scott Silvestry
Florida Hospital, Orlando
"What I think is going to happen in next five to 10 years is the convergence of the technology to resuscitate hearts along with the development of acceptable protocols that would allow patients' hearts to be donated, not when they are brain dead, although still alive, but after their hearts have actually stopped."
Clinical health psychologist,
Tampa General Hospital
"There will come a time when we're going to grow organs in Petri dishes. It's an amazing thing to think about."
Dr. Thomas Beaver
Chief of thoracic and cardiovascular surgery, University of Florida College of Medicine, Shands Hospital, Gainesville
"The biggest hurdle we have today is donor availability. We're limited by the number of donors we have."
Florida's Heart Health
Over the past two decades Florida's death rate from heart disease has fallen dramatically, from 275 per 100,000 population to 150, a decrease of more than 45%.
Among Florida's 67 counties, from 2011 to 2013, Collier County had the lowest heart disease death rate, 100.6 deaths per 100,000 population, with Martin County next at 108.6.
The highest death rates from heart disease in Florida are concentrated in seven eastern Panhandle counties and seven counties in the Big Bend area. All 14 counties have relatively small populations and are among the Florida counties with the lowest per capita incomes. The highest heart disease death rate was in Holmes County, with 269 per 100,000 population, followed by Madison with 249.7 and Calhoun with 222.3.
The national six-month heart transplant survival rate increased from 86. 1% in 1999 to 91.6% in 2009.
The number of patients living with a transplanted heart increased from 13,715 to 20,369 between 1998 and 2009.
Nearly half of all transplant recipients are between ages 50 and 64.
Males constitute 72% of all heart transplants.
49% of all heart transplant candidates remain on the wait list for less than one year.
13% of heart transplant candidates remain on the wait list for four years or more.
The United Network for Organ Sharing, a private, non-profit organization, is exclusively responsible for distributing all donated organs nationwide, including hearts, kidneys, lungs and livers. UNOS' network is organized by 11 geographical regions. Florida is part of Region 3, which includes Georgia, Alabama, Mississippi, Louisiana and Arkansas.