Thanks to the steady advancement of medical research, organ transplantation has become an effective last resort treatment for many patients suffering from organ failure. But the need for organs far exceeds availability, says Pat Giordano, the executive director of the San Antonio-based Texas Organ Sharing Alliance (TOSA), one of 58 federally designated organ procurement organizations in the United States. In Texas alone, there are currently 8,363 people waiting for a life-saving transplant, and many will die before a suitable replacement is found. That’s why TOSA and, for that matter, everyone else involved in organ transplants want the public to know that if you intend to become a donor upon your death, you should let your family know about it, as well as register with the Donate Life Texas registry maintained by the Department of State Health Services. “One donor can save the lives of several people,” Giordano points out. “It’s truly a gift of life.”

Below are the moving and inspirational stories of women whose personal experiences speak powerfully about this issue.

A NEW HEART

Ask Bonnie Lundy how she met her husband-to-be and you’ll hear the most stunning answer: “Over my dead body.” She’s not kidding. As a heart transplant patient, Lundy is supposed to undergo an annual cardiac catheterization to make sure that there are no blockages in her arteries. Usually everything goes smoothly. But a couple of years ago, her heart stopped during the procedure, and she started to turn blue from oxygen deprivation. In medical parlance, a situation like this is referred to as “code blue,” meaning life-threatening emergency. “I coded as soon as they injected the dye (to observe its flow in the arteries). When they called code blue, Michael was one of the doctors summoned to revive me,” explains Lundy, smiling, aware of the impact of her account. “I later asked him what his first impression of me was, and he said, ‘You were very blue.'” “Michael” is Dr. Michael Kwan, a transplant cardiologist who, by the time you read this, will be Lundy’s husband. Following the dramatic resuscitation, Kwan became her regular cardiologist, and little by little the two discovered that they shared a lot more than their common interest in her health. At 37, Lundy says she had never wanted to get married before because of her potentially precarious health, but “Michael definitely

knows what he is getting himself into,” she jokes, obviously excited about her upcoming wedding.

We are sitting in her office at the Transplant for Children nonprofit agency, where she has been the executive director for the last six years. The organization provides financial, emotional and counseling support to young organ transplant recipients and their families, both before and after the transplant operation. Of the 350 kids a year who pass through the TFC operation, most need a kidney or a bone marrow transplant. “As soon as it is established that a child needs a transplant, our social worker approaches the family to explain what we can do for them and gives them our package with information,” explains Lundy. “This is a time when they are distraught and confused. We make sure they understand that we are available to talk to them. Then we give them a little time before contacting them again. Our financial assistance also helps. Even though it’s only $750, it helps with medicine co-pays, hotel accommodations if they are from out of town, gas and other expenses.” Among the programs TFC offers are parent support groups, one-on-one counseling, programs for siblings and health and wellness education. In addition, the agency will help the families avail themselves of other practical services in the community. “Anything they ask, we try to answer,” says Lundy. If ever there was a perfect match between a job and the person performing it, Lundy’s case must be it. Not only is she an effective fund-raiser for the organization, but she knows from personal experience what her clients are going through.

Twenty years ago, Lundy herself was a carefree 17-year-old looking forward to a promising life when one day she started coughing intensely. Just the weekend before she had been riding horses and feeling fine. In a couple of days, she found herself in the hospital with a fever, undergoing a long list of tests. After a couple of weeks of uncertainty came the dreadful diagnosis: viral cardiomyopathy, which meant the steady deterioration of her heart muscle. “I had never been in the hospital before,” recalls Lundy, a petite blonde with an easy manner. “I didn’t even know what a heart transplant was. When they told me I had six months to live unless I got a new heart, I was shocked.” And scared. She was sent home with a pager that was supposed to alert her the moment a suitable heart match became available. The waiting was excruciating, she says. She spent her last high school year homebound, holding her breath each time the phone rang. At one point, she was removed from the waiting list because her heart function had improved, thanks to medication. Unfortunately, it was only temporary. At age 21, Lundy was back on that list. “I missed the first call,” she recalls, “but two weeks later they called again. We drove to Houston’s St. Luke’s Hospital (where the operation was supposed to take place) only to be told that the heart was no longer available. Then I stayed in Houston for six months, waiting.”

Finally, on Aug. 9, 1992, she was implanted with a new heart, which is still beating in her chest today. That was the day Lundy’s life became forever linked with her donor’s. Just a few days before her life-saving operation was carried out at St. Luke’s, a young woman named Shay Ledbetter had suffered severe head injuries after being struck by a car while on an evening walk. When Shay was pronounced brain-dead five days later, her brave and generous parents decided to donate her organs, including her strong, young heart, to save the lives of others. Every day, Lundy is grateful for that gift. In an essay she wrote about her experience, she put it this way: “I had a chance to live again, but I had to live for two, taking full advantage of my own new life and compensating for hers that had been cut so tragically short. Together, we had a legacy to build.”

“Everything I do is to honor her,” says Lundy today. “Back then I didn’t know who the donor was, but I eventually tracked down the family and wrote to them. Fox 29 TV was present at our first meeting in Dallas. I know that because they sent me a video of it, but at the time I was too emotional to realize that the cameras were there.” Since then, Lundy has grown so close to the Ledbetter family that she has asked Shay’s father, Bill, to walk her down the aisle on her wedding day.

But the road to getting where she is today was by no means a smooth one. Not only was the post-transplant recovery a lengthy process by itself, but to make things worse, eight months into it, Lundy suffered a stroke. To recover from that she underwent months of physical therapy. She grew strong enough to start an exercise program and after a couple of years finally felt that it was time to move on with her life. Working for non-profits in the health care field seemed like a natural fit. She spent the next six years working first for the national Kidney Foundation and then the Alzheimer Association before taking the job at TFC, where she had been active as a volunteer for several years. Under her leadership, the agency’s budget has grown from $250,000 to $1 million. One of her current goals is to build a residential facility for children and families who come to San Antonio for transplant-related medical care. The city has become a prominent transplant center — with trained medical teams in three hospitals — but it has no housing for out-of-towners such as the residence where Lundy and her family stayed in Houston for more than a year.

Depending on the case and type of organ, a child may wait as long as three to five years before a suitable donor is found. Once the housing project becomes reality, whether as a stand-alone entity or as an addition to the Medical Center Ronald McDonald House, Lundy hopes that TFC will be able to establish a presence in other Texas cities, as well. Upon meeting her, you would never guess that anything was ever wrong with this seemingly healthy and very active woman who participated three times in the 700-mile bike tour across Texas sponsored by the Lone Star Circle of Life to promote awareness about the need for organ donations. Yet health issues remain part of her life. The anti-rejection medications that she continues to take make her more susceptible to a number of ills. Over the years, several melanomas have been removed from her skin, and she suffers from atherosclerosis (hardening of the arteries).

For her remarkable courage and for her dedication to helping others, Lundy was recently honored as a winner in Nabisco 100 Calorie Packs “Celebrating 100 Extraordinary Women” contest and attended the award’s inaugural event held in Los Angeles in June. The stories of all 100 women, including hers, will be featured in several national magazines in October. Life couldn’t be better right now, but Lundy is aware that transplanted hearts have limited viability — 10 years on the average. Hers has lasted for 16, thanks to her healthy exercise and diet regimen.To have a normal life span, she would most probably need to be re-transplanted at some point. “It’s disheartening to think that Mike and I may not grow old together,” she says calmly, “but I am not afraid of death. I don’t want to die, but if it happens, I’ll be OK. I just deal with things as they come. There isn’t enough time to worry about everything that can happen.”

A SECOND LIFE

On the wall in Sister Michele O’Brien’s office there is a timetable showing the milestones in organ transplantation. The first successful kidney transplant between two twins took place in 1954. In 1967, anti-rejection drugs, so-called immunosuppressives, were introduced. That same year Dr. Christiaan Barnard performed the first heart transplant, in South Africa, which was followed the next year by the first such operation in the United States. And the list goes on. Though she has worked in health care for over 40 years, Sister O’Brien’s interest in organ transplantation was born from a personal experience. Like Lundy, she was literally at death’s door back in 1995, when a donated liver gave her a new lease on life. Seeing her today, a vibrant, deeply engaged 65-year-old professional, one feels nothing but awe for the medical “miracle” that made her “second life” possible. Yes, that’s what she called it — a second life.

Sister O’Brien was only 24 when a blood analysis showed that all her liver tests were slightly elevated. An energetic young radiology technologist at the time and a born organizer, she had already become the head of the radiology, radiation therapy and nuclear medicine department at St. Anthony’s Hospital in Amarillo. Like Santa Rosa here in San Antonio — where Sister O’Brien started her career — St. Anthony’s was run by the Sisters of Charity of the Incarnate Word, the order she joined while studying at Incarnate Word College. A few months later, a biopsy showed further abnormalities. “The biopsy sample was sent to Dallas for analysis. No one had a name for what they were finding,” says Sister O’Brien, who is currently the director of adult advocacy and public policy at Christus Santa Rosa Health Care. “I wasn’t too worried, though. I was feeling all right, and I went off to nursing school in St. Louis. I really wanted that nursing degree.” The mystery illness was finally diagnosed as primary biliary cirrhosis, a progressive autoimmune disease that causes the destruction of small bile ducts within the liver, eventually leading to liver failure. Ninety percent of sufferers are women. We have no cure, the physicians told her; we can only treat the symptoms. In 15 years or so, you’ll probably die.

“Well, I better get busy, I thought,” she says lightheartedly today. And busy she certainly was. As she began to actually experience symptoms and the liver enzyme numbers kept creeping up, she signed up for the first of the three clinical trials she would eventually be in, then went on with her life. At this point, she was back in St. Louis after a stint as nursing supervisor at the small St. Joseph’s Hospital in Paris, Texas. For the next 15 years, Sister O’Brien applied her organizational and networking skills in a series of managerial jobs at the Incarnate Word Hospital (in St. Louis), in her convent and at the Roman Catholic Archdiocese of St. Louis. Always one to think of the poor and disadvantaged, she was also instrumental in establishing a series of community-based programs such as neighborhood clinics and women’s shelters. “I was always looking to find whom we could network with to get the job done and benefit the community,” she notes. “That’s how you get synergy going. We can do so much more together. If there’s a problem, the entire community has to be part of the solution.” But her health was continuing to deteriorate. By 1989, she was in crisis mode. For the first time, the possibility of a transplant was mentioned. “I felt terrible,” she recalls. “I lived with a plastic bag in my purse because vomiting had become a regular thing. The drugs they were giving me helped for only a while. Of course, I prayed. ‘I am open, Lord, give me the energy to respond correctly to whatever comes.’ I am a nun. I believe that life is not limited to life on earth.” Though she took a year off from work, in 1993 Sister O’Brien was back in San Antonio, working at Santa Rosa while also serving on its board. Once more, she went to Dallas to be evaluated for a transplant, as her legs and abdomen were filling with fluid and her skin was becoming severely jaundiced. Like Lundy, she was told that she had six months to live if a replacement liver could not be found. And like Lundy, she got the anxiety-inducing beeper. There were two false alerts. Finally, as even breathing grew more painful, she gave up on Dallas and called University Hospital here, where a transplantation program had just been started by UTHSC doctors. But there was more waiting. In the end, she was so drained of energy that she fainted in the shower and slipped into a coma.

That happened in late October. When she woke up, she could see Christmas lights through her hospital window. Though mostly comatose, she was at times vaguely aware of what was going on around her in the hospital. At one point, her nursing training kicked in, and she even issued instructions to the nurses taking care of her. Through the long ordeal, doctors had to battle bleeding, infections and general deterioration before they could perform the transplant itself. But when she saw those Christmas lights, she realized she had been given a second chance at life. Talk about a Christmas present! “The entire experience has given me a sense of mission to let the world know what transplants can do,” says Sister O’Brien, who doesn’t look like a nun at all, dressed stylishly in a pale summer suit, her hair smartly coiffed. I even detect a touch of makeup. “They are no longer experimental. Of course, there will be complications. You can’t do that much to a person and not expect complications, but it works.” Unlike Lundy, she has never met the donor’s family though “they are always in my prayers.” The donor was a woman about her age who suffered a blood clot in the brain because of a severe asthma attack. Then seriously, “I’ve gotten a second life. I am blessed.” She is not one to waste it. Besides lobbying legislators on behalf of patients and her health care system, Sister O’Brien is involved with a number of other organizations in town, such as the national Kidney Foundation, the Texas Organ Sharing Alliance and the Bexar County Community Health Collaborative, which she founded.

On the day we met, she had just returned from Beeville, where she had attended a celebration marking the beginning of a project close to her heart — the future nursing school at a local community college. The need for nurses and nursing education has been on her advocacy agenda for some time, so she was naturally pleased to learn that the legislators had approved funds for the new school.

But the list of issues that she deals with is long and varied. “I am a nun. I am supposed to be doing these things!” she observes. The important thing is to communicate to elected officials how their actions impact the health care of ordinary people, especially the ones who can least afford the services they need. As for her own medical bills, they were all paid by her insurance.

When she speaks to other organ recipients, she emphasizes health maintenance, something she definitely practices personally. “You have been given this gift,” she tells them. “Now it’s your responsibility to take care of it.”

THE GIVERS OF LIFE

In the organ transplantation story, life and death are so closely entwined that one could hardly exist without the other. For a heart or liver to become available, someone must die. For the family of the deceased it is certainly a difficult time to make any big decisions, yet despite their pain, some families generously agree to donate their loved one’s organs to save someone else’s life. Such was the case with the relatives of Adrian Camarillo. Adrian was only 18 when, on the way back home from a football game, he lost control of his pickup truck on a country road between Carrizo Springs and Devine. The vehicle rolled over three times, DPS later reported, ejecting Adrian and his three friends. That night, Adrian’s mother, Mary Jane Balderrama, waited for him in vain. At 5:30 a.m. she received the call every mother dreads. A doctor from the Wilford Hall Medical Center told her that her son had been in an accident and that he was in critical condition, having suffered a severe head trauma. When she arrived at the hospital, Balderrama was temporarily relived to see no external signs of injury. “He lay in that bed without a scratch on him. It was hard to believe what the doctors were telling us,” she says, recalling the terrifying experience. At one point a ray of hope appeared following an operation to reduce brain swelling, but within 20 minutes, the situation turned critical again. The next day the young man died. “They told me he was brain-dead. Yet we could still see his body that was still breathing, still warm and beautiful. You wonder how they can be sure that he is dead,” she muses. After the physicians performed a brain scan showing no activity, even a devastated mother had to accept the evidence. She asked to spend some time alone with her son, holding his hand and talking to him. To this day, she regrets that she wasn’t able to hug him because the bed had been positioned too high for a woman of her small stature.

Adrian left this world at 10 a.m. on a Sunday, at the time he had earlier promised his mother to be in church. “I said to myself, he went to a bigger church, the one in the sky. He kept his promise,” says Balderrama as both of us are starting to tear up. We are having this conversation in the small skin-care/massage space Adrian’s big sister, Neva Fernandez, operates, and when I glance over in her direction, I can see that she is dabbing her eyes, too. Within a half-hour or so of the death, mother and sister and the rest of their family were approached by a TOSA representative and ushered into a private room to talk. Because time is of the essence in organ recovery, the difficult task of broaching the subject with the grieving family must be tackled soon after a person has been pronounced dead.

“I couldn’t really follow what the man was saying; I was in a fog,” Balderrama tells me. “But I remember hearing something about Adrian’s skin and I went, ‘Oh, no, don’t touch his skin!’ Otherwise I don’t remember the details of the meeting, but I do know that there was no hesitation on our part. It was a resounding yes as we responded as a family. They assured us that our son wouldn’t be deformed in any way. That was one of our concerns.” It helped that they knew that Adrian had indicated on his driver’s license that he wanted to be an organ donor. Ironic and sad as it is, young accident victims make the best donors, as organs not damaged in the accident are usually in good shape. Adrian’s heart, kidneys and corneas ultimately helped five people: a 52-year-old father of seven from Louisiana, who got the heart; two San Antonians, who received one cornea each; and a man and a woman whose lives were transformed when they were given new kidneys.

Though several of the fortunate recipients wrote notes of gratitude, Adrian’s family never got a chance to meet any of them. Balderrama was especially touched by the letter she received from one of the kidney recipients, an 18-year-old girl who described how she had been on dialysis since age 7 and how the donation opened a future for her. She was able to go to college, the letter said, and was hoping to become an anesthesiologist. Much as both mother and daughter would like to meet the individuals who have this unique connection with their loved one, they have learned that recipients and those on organ transplant waiting lists may have complex and conflicting feelings about the whole thing.

“When we went to meetings with these groups and listened to them, we found out that many of them had a lot of guilt,” explains Fernandez. “Some felt that they were not worth it. I remember an older man describing how badly he felt that someone would have to die for him to get the heart transplant he needed. Some spoke about praying for a matching organ only to realize that they were essentially praying for someone to die. That’s when it clicked for me. Maybe that’s how (the recipient of Adrian’s heart) feels. Maybe it’s difficult to say thank you face to face.”

On those occasions, both Fernandez and Balderrama have tried to alleviate those concerns by emphasizing the obvious: that recipients and prospective recipients had nothing to do with the donor’s death. Accidents happen, and people die from a variety of other causes as well. It’s just the way it is. “For us,” says Balderrama, “it’s a consolation to know that our loved one’s death was not entirely in vain. It helps us heal.” Balderrama is also invited to speak to medical personnel at various facilities to educate them about TOSA and about the needs of families of dying patients. Well-informed medical personnel must guide people at the time when their own rational thinking is shaky because of their loss, she notes. Even little things matter. Fernandez recalls a thoughtful nurse who offered to cut a strand of Adrian’s hair for her to save. Years later that strand of hair has become a precious link to a beloved brother. Both mother and daughter also take part in events that aim to increase the community’s awareness of the need for donors.

Twelve years have elapsed since Adrian’s death, and the passage of time inevitably brings some healing. Still, one never forgets. In Adrian’s memory, the Camarillo- Balderrama-Fernandez families adopted a 2-mile stretch of Highway 35 near Devine, where a blue Adopt-a-Highway sign was placed in Adrian’s memory. The Texas Department of Transportation erects these signs for any group that volunteers to keep the roadway free of debris for at least two years. Adrian’s relatives not only keep things clean, they also plant flowers around the sign. And once a year, the entire community comes out to participate in a major cleanup. For Balderrama, the sign is a comforting sight. “Every time I drive in, I smile when I see that sign,” says Adrian’s now smiling mom.

Author: Jasmina Wellinghoff

Photographer: Liz Garza Williams