Hearts are in short supply -- each year about 6,000 to 8,000 Americans are told they need new hearts to survive, but only about 2,500 hearts are transplanted -- and many people simply die waiting.
In the complicated world of heart transplantation, actually making it to the waiting list is considered a hopeful sign. These "lucky" patients also must be "healthy" enough to be considered good candidates for a transplant, meaning their doctors think they still are strong enough to survive the rigors of surgery. Then, if they make it through surgery, they face a lifetime of taking powerful drugs that suppress their bodies' immune systems as well as other drugs that keep cholesterol and blood pressure within normal ranges.
When patients make it to the top of list, they usually are moved into special units at transplant centers. These units become home, sometimes for months and months.
Donnelly Davis, 64, of King of Prussia, Penn., "checked in" to the heart failure-heart transplant unit at Temple University Medical Center in Philadelphia in late January. Davis said he has been living with his heart disease for years. He gives it a matter-of-fact recitation: heart attack, bypass surgery, angioplasty.
A retired maintenance supervisor with the Pennsylvania Department of Transportation, Davis also freely admits years of poor eating habits piled on weight until he ballooned up to 197 pounds, which put extra strain on his already weakened heart. A few years ago he "started eating the right way and I got down to 178 pounds and have been able to stay at that weight."
Even weight loss was not enough to slow Davis's disease, however. "Finally a vein collapsed, and the doctors told me it just got to a point where it was too dangerous to try anything other than surgery," he said in an interview with United Press International. By early July, Davis and 16 other patients were living in the Temple unit, all of them counting every beat of their struggling, worn-out hearts and waiting for a good word.
At the unit, each patient has his or her own room. Common rooms provide community meals, movies and board games. Residents have individual medical treatment plans aimed at keeping them strong enough to survive surgery, but all residents also do regular workouts with the cardiac rehab team.
All residents also participate in traditions that have been carefully nurtured over the last 10 years, explains Dr. Howard Eisen, who serves as medical director of the unit. Eisen told UPI that because patients wait for six months or more -- one patient waited more than a year -- they may end up knowing each other better than they know their neighbors at home.
One of the traditions is a Sunday brunch, in which the patients serve as cooks and hosts for family, friends, hospital staff and those lucky former residents who already have their new hearts. "We like to see people coming back," said Davis, who noted Sunday brunch is one of his favorite activities. In his case, he often has one or more of his four adult children join the "brunch bunch".
Down the hall from Davis, Edith Lopez, 60, lives in a room whose walls are covered with pictures of the five children and 10 grandchildren from the blended family created when she married her second husband. Lopez has been waiting since March for her heart, but her wait began with a crushing disappointment. She was in her doctor's office when a call came in with news that a heart was available for her. She had two hours to get to Temple Medical Center in Philadelphia. She arrived just under the wire from her home in the Pocono Mountains, a popular Pennsylvania resort area about three hours west of New York City.
"But when I got here I found out the heart was no good. And then I found out I had to stay here," recalled Lopez. She told UPI she "cried for days and days. I was very unhappy and very disappointed." With the help of her family and the Temple staff, she has worked to overcome that early disappointment. But even months later, recalling the event makes her voice choke with emotion.
Lopez and Davis both were in good spirits when interviewed, because two other residents received transplants the previous week. Successful transplants always raise waiting patients' spirits, Eisen said. At Temple, when a patient "goes down for the transplant we all gather in his or her room and say a prayer around the bed," said Davis. Eisen said he helped patients establish this ritual and he encourages them to carry on the tradition.
Dr. Randall Starling, who directs medical services at the Cleveland Clinic Heart Transplant Center, told UPI although the center does not encourage formalized rituals, it does work to build a sense of community. A big factor in that community building is the decision to continue medical care of transplant patients in the same unit before and after transplant. "Everybody comes back here, so the patients see the patients who are months to years out from heart transplant," said Starling.
"I love to see these people coming back," said Edward Jenkins, 59, an insurance broker from Warren, Pa., about three hours east of Cleveland. "I have a family history of heart disease and I have been dealing with my disease since I was 42," said Jenkins.
Two and half years ago he went on disability when his disease made even simple activity too tiring or painful. For example, "I noticed that chewing gum or hard candy caused cramps in my jaw," Jenkins said. When he talked with UPI in early July, he had been in the hospital for three weeks.
Hospitalization is both good and bad news, said Jenkins. "If you are in the hospital, you know you are going to get a heart," he explained. But hospitalization also means the patient is so sick he or she needs a type of heart drug that can only be administered by a constant intravenous infusion. Such drugs, called inatropic medications, help the heart beat more efficiently, which means that more oxygen is carried to the other organs in the body. But it can be discouraging when patients realize their hearts are so weakened they need the IV drugs to survive.
Because of this emotional background, medical staff members at heart failure units try to make the IV therapy as palatable as possible. At the Cleveland Clinic, for example, patients look at their IV polls as "sort of totem poles.
"You will see all types of pictures, stuffed animals and charms attached to the poles," said Starling. At Temple, patients use a new pump technology that allows them to carry the IV apparatus in special fanny packs providing maximum mobility, said Eisen.
Although efforts at community building may make "the wait" more tolerable, patients still are faced with the daily knowledge that there are too few donor hearts to meet the need. This continuing deficit has led several organizations -- the American Congress of Transplant Surgeons, the United Network for Organ Sharing and the American Medical Association, to name a few -- to make tentative moves toward endorsing some type of payment for organ donations. The groups are considering cadaveric organ donations only, meaning organs from people who are brain dead but whose hearts are still beating.
At this point the organizations are calling for a pilot study to determine if a relatively small financial incentive -- for example, $300 toward funeral expenses -- could increase the number of cadaver organ donations.
Jenkins said he has been following the debate about incentives and thinks there should be a "fairly nominal incentive for burial or funeral expenses. But I don't see that a big financial incentive is the way to go." He said a better option would be "mandatory organ donation. Unless someone says specifically that they don't want their organs donated, the organs should automatically be donated."
Jenkins said he has been a "recruiter for organ donations for years." All three of his adult children "signed up as donors." While he still was working, Jenkins regularly brought up organ donations at business lunches and social gatherings, and he said he has been "very successful in my campaign."
Faced with the ongoing shortage, heart transplant surgeons, cardiologists and organ procurement officers met last fall to hammer out new selection criteria for donor organs. At that meeting, which was sponsored jointly by the American Heart Association and the United Network for Organ Sharing, heart transplant leaders agreed to make sweeping changes in the criteria and those changes are expected to be made public within weeks.
Those anticipated changes, agreed Eisen and Starling, might be the best hope for their patients who are waiting and hoping. Right now, only about 39 percent of donated hearts are transplanted. But several experts who have seen new guidelines predict that percentage could climb to more than 60 percent if the new rules are implemented.
Meanwhile, the days stretch to weeks and months as the wait goes on. "But consider the alternative," concluded Davis as he set off to plan yet another Sunday brunch.