Charlotte Dufrene Danos works at a small fruit stand on a rural strip of Highway 190 in Boutte, La. Across the highway, there's a Waffle House patronized by many of her fruit stand regulars. Danos suggests we meet there for the interview. She's stirring her coffee when an afternoon thunderstorm rolls in. She raises her voice to be heard over the clatter of dishes and heavy rain.
"They were considering Lauren for the (transplant) list, but they only pick the best people for transplants, the people who the transplant will last in," Danos says of her daughter Lauren Zehr, a 27-year-old cystic fibrosis patient who died last December after her lungs failed. An artist, Danos shows me some of the sketches she drew of herself and Lauren during their many hours in the hospital. They both have wistful smiles and startlingly blue eyes.
"Lauren was held back from the list because she was bipolar and diabetic," Danos continues. "She had some kidney damage, which is to be expected after a lifetime of antibiotics. Nevertheless, they decided they would shoot her to the top of the list if she could get off the ventilator. But she couldn't get off it."
Danos' cousin, who also had cystic fibrosis, was on the organ transplant waiting list when she died. According to Lana Stevens, a community educator for the Louisiana Organ Procurement Agency (LOPA), there are 110,000 people in the United States waiting for transplants, 1,800 of whom reside in Louisiana. "About two-thirds of them are waiting for kidneys, and we have 43 people waiting for a heart transplant," Stevens says. Because only patients who die from brain death (2 percent of all deaths) are eligible to have their organs harvested for transplant, it's a bitter truth that organ demand outstrips supply.
"Even countries that have implied consent such as Portugal and Spain still have a waiting list," says Dr. Anil Paramesh, assistant director of surgery at Tulane University Medical Center and medical director of LOPA. "I don't know if we will ever completely close the gap between the need for organs and the wait list. But every little bit helps."
That's why it's important for everyone to sign up to be organ donors, says Cheryl McGee-Hills. Her husband waited five years before receiving a kidney transplant. The kidney donor was McGee-Hills' brother, who died after he had an aneurysm while jogging. "The organs went to four people in three different states," says McGee-Hills, who shares her experience at churches, schools and businesses as a community educator for LOPA. "We don't know when we are going to go, but when we do, we can help a lot of people."
For patients like McGee-Hills' husband, the wait for an organ can be long. "For kidney transplants, it's first-come, first-served, so the waiting time might be two to five years," says Dr. George Loss, head of transplant surgery at Ochsner Medical Center. "For the liver and heart transplants, it is more of a triage system. If you are less sick, you will be lower on the list."
Any potential transplant candidate must undergo a rigorous evaluation procedure to determine whether he or she is eligible to be on the transplant waiting list. A group of professionals, which includes a transplant team, dietitians, nurses, financial counselors and social workers, examines the patient's mental and physical health, social support network and financial status, among other indications and contraindications.
"(Organ transplant) is a big operation," Loss says. "We determine whether or not someone is a candidate. We are trying to identify potential problems. It's like adopting a child. You want to make sure everything is in good condition before the organ arrives."
McGee-Hills and Stevens say there's a myth that rich and famous patients are likelier to receive organ transplants than their everyday counterparts. "It seems like the rich and famous get priority because they have the money, but there is a waiting list, and they must wait like anyone else," Stevens says. However, money is still a factor as to whether a patient is eligible to be on the waiting list at all.
"Transplant is an expensive procedure," Paramesh says. "This is not like any operation. We are responsible for making these organs work. We're talking about the cost of surgery, the work-up plan, which takes weeks and months, and all the follow-up needs to be covered somehow, and that takes money. In most cases, insurance does cover it. But insurance has gotten more complicated, and in some cases that may not be in place, in which case (the patient) will not qualify."
Zehr spent months meeting with doctors and having tests run, hoping be put on the lung transplant waiting list. "She made a list: 'What I need to do to get better,'" Danos recalls. "It was: Eat. Pray. Do (breathing) treatments."
Throughout the process, Danos never lost hope that her daughter would receive a transplant. "I think a positive attitude is the best way to handle it," she says.
For patients who do receive a transplant and a second chance at life, the impact is nothing short of miraculous, McGee-Hills says. "In our profession, we hear and see the good of organ transplants every day. We see the side where families have lost, but we also see the side where recipients who have been sick all their life ... finally know what it is like to feel well," she says.
McGee-Hills adds that the act of organ donation can heal not only the recipient, but also the family of the deceased donor. "It helps out donor families with the grieving process. A lot of times, (the recipient) becomes an extended family." LOPA's Family Services division allows donor and recipient family members to contact each other, and 1,400 people attended the most recent yearly donor family picnic, where donor families meet the recipients of their loved ones' organs.
Some transplants use organs and tissue from living donors. Bone marrow donations can save lives, and any healthy person between ages 18 and 60 can join the Be The Match bone marrow registry at www.bethematch.org/stepup. About 76 percent of the time, bone marrow is harvested through peripheral blood cell donation, an outpatient, nonsurgical procedure similar to donating platelets or plasma, says Kirsten Lesak-Greenberg, spokesperson for the National Marrow Donor Program. In other cases, it is removed from the bones with a hollow needle in a surgical outpatient procedure while patients are under general or local anesthesia.
"About one in 40 (people) on the list will be identified (as a potential match), and one in 540 will go on to donate to a patient," Lesak-Greenberg says. "When you join the registry, you might not ever be a match, but you might also be the only match on a registry of nine million."
There is a special need for African-American donors, as patients are more likely to have a tissue match with a donor of the same race, and fewer African-Americans are on the registry. "July is African-American bone marrow awareness month," Lesak-Greenberg says. "For an African-American, there is an estimated 66 percent probability of a match versus a Caucasian, who has a 93 percent chance of finding a willing and able donor."
Living donations, which is when a living person donates an organ (most commonly a kidney, a lobe of a lung, or part of the liver, pancreas or intestine) are another way a living person can donate organs. Tulane University Medical Center, LSU Health Sciences Center Shreveport and Ochsner Medical Center perform living donation transplants.
Surgeons, community educators, organ donors and just about anybody else affected by organ transplants are unanimous on one point: "If you want to be a donor, sign the back of that license, join the registry with LOPA, and first and foremost, let your loved ones know," Loss says. McGee-Hills and Stevens agree and are eager to share their organ donation wisdom."It should be a discussion at your lunch table, at dinner, with friends, because it can happen to your friend, your neighbor, your loved one," McGee-Hills says. "Please contact us because we'll talk to your college, school, church, neighborhood association ... we'll talk to anyone."
Danos, too, hopes more people sign up to be donors so more organ transplants can be performed. "Lauren was so young. There was so much life she wanted to live out," she says. "Everyone deserves a chance at life whose life would be cut short otherwise."
To become an organ and tissue donor, sign up at at the Office of Motor Vehicles, online at www.donatelifela.org/signup or by calling (800) 521-GIVE (4483). Join the Be The Match bone marrow registry at www.bethematch.org/stepup. For more information about living donations, visit www.transplantliving.org/livingdonation.