Stella Garcia is well known around Pinal County for her upbeat personality and willingness to help people. She made friends during her years working in marketing at Central Arizona College and through her time teaching children at St. Anthony of Padua Catholic Church in Casa Grande. She makes a point to remember people’s birthdays and keeps a list, and she would bring co-workers gifts on those days. How many Christmas cards did you send in December? Stella sent 350, give or take a few.
Stella, along with her husband, Ramon, “gives selflessly to anyone and everyone without any expectation of return. She thinks of others yet expects nothing in return,” according to Tom Di Camillo, who worked with Stella at CAC.
That Stella has maintained her positive attitude is remarkable given what’s happened to her body over the last 15 years.
The kidney failure was only part of it, but it was brutal. She sat through dialysis treatments three times a week for two and a half years. The treatments weren’t painful, but she had to keep still for hours. When it’s over, “you look like you have been hit by a truck because when they clean out your blood, they clean out everything, good stuff and bad. It robs you of energy,” Stella said.
Then there was the “renal” diet for kidney patients. “It’s the worst diet you have ever seen, worse than the diabetes diet,” she said. Even in the dead of summer, with temperatures over 100 degrees, she could only have a liter and a half of fluid every 24 hours. Ramon gave her shaved ice because a big cup of it contains much less water than it appears.
Stella’s health problems started in 2003 when she learned she had been born with a defective heart valve. In 2008 she developed signs of diabetes. While on a prescription drug to control her blood sugar, she suffered congestive heart failure. She gained 50 pounds in little more than a week and couldn’t lose it. After she had heart valve replacement surgery, doctors did a dye contrast test to see what was happening inside her body. Her kidneys shut down, and she was stuck in the hospital for a month.
Then came the dialysis and that renal diet. She followed the diet “to a ‘T’” and weaned herself off dialysis, but her plight was far from over.
She developed cirrhosis of the liver, even though she doesn’t drink. “How can I have fatty liver? I don’t have high blood pressure, I don’t have high cholesterol. I’m really careful of what I eat,” she said. Her ammonia levels “would go crazy,” she said, and she forgot things. “I would get off the phone and ask who did I talk to?” That made it difficult to do her job. In September 2014, she took medical leave from CAC.
Doctors sent Stella to the Mayo Clinic in Phoenix for tests to determine whether she was a good candidate to receive a kidney and liver transplant. There, she learned she had valley fever and had to wait until the infection was gone. Meanwhile, she bled internally. She spent Christmas Eve in the hospital, Christmas Day at home, and then the day after Christmas back in the hospital after coughing up a dangerous amount of blood.
On Jan. 16, 2015, Stella made the transplant list. The median wait time for a first kidney transplant is 3.6 years, according to the National Kidney Foundation. Twenty people die every day waiting for a transplant, according to organdonor.gov, a website operated by the United States Department of Health and Human Services. Stella needed a double transplant, so the odds didn’t look good.
Then after 15 years of bad luck with her health, something extraordinary happened. The phone woke her and Ramon at 3:30 a.m. She had been on the list for less than 24 hours, but someone from the Mayo Clinic was calling to tell Stella a new liver and kidney were waiting for her. It was time to drive to Phoenix and have the operation. Now.
In 1983, a physician in Virginia named H. Barry Jacobs formed an organization to buy and sell human kidneys. Some of the kidneys would be purchased from people living in underdeveloped countries. A healthy donor might charge up to $10,000 for a kidney, and the recipient would pay that amount, plus a broker commission of $2,000 to $5,000 to Jacobs. “The medical community and legislators responded in outrage,” according to a report at Medscape, a website for health care professionals.
The first successful kidney operation had taken place in 1954. By the late 1960s, liver, heart and pancreas transplants had been successful. In the early 1980s, medical advancements led to a higher success rate and an increase in demand from the public. The legal jurisdiction for a corpse was not clear, and there was no unified process for organ transplantation in the United States. That allowed people like Jacobs to consider selling organs like cars or timeshares.
The National Organ Transplant Act of 1984 outlawed the sale of human organs and established the formation of an Organ Procurement and Transplantation Network to be run by a private, nonprofit organization under federal contract. The contract was awarded to United Network for Organ Sharing, which established a process to match organs with those in need and a system to collect and publish data about matching and transplants.
“The field of organ and tissue donation and transplantation is one of the most regulated areas of health care today,” according to the U.S. Department of Health and Human Services. “Both state and federal legislation has been put in place to provide the safest and most equitable system for allocation, distribution and transplantation of donated organs.”
The Organ Procurement and Transplantation Network oversees 58 organ procurement organizations, including the Donor Network of Arizona, for the evaluation and procurement of deceased-donor organs.
There are two ways to register to become an organ donor in Arizona. One is online with the Donor Network of Arizona at register.donatelifeaz.org/register/ref/mvd-link. The other is to check a box on a form at any Department of Motor Vehicle office when you acquire or renew your driver’s license.
Most organ and tissue donations occur after an anonymous donor has died, like the kidney and liver donations that Stella received. Some organs and tissues can be donated while the donor is alive. Humans are born with two kidneys, for example, but only need one to live. Nearly 6,000 living donations take place each year in the United States, or about 1 in 3.
Danny Lopez of Casa Grande took medicine for high blood pressure but had no idea he was suffering from chronic kidney disease. He felt fine. He took a routine blood test to renew a prescription and got a phone call the next day with the bad news.
“I was depressed,” Danny said. “Every time I went to the doctor it was worse. What’s he going to tell me? Am I going to go on dialysis?” He dreaded the thought. His sister had gone through dialysis. “The quality of life she had was no life at all,” he said.
Of course, it would have been better than the way he was feeling with advanced kidney disease. “You have no energy,” he said. His feet swelled and he lost almost 100 pounds. “I would eat, but I would throw up every day for a good three or four months,” he said.
Danny was put on the transplant list, but there’s that median wait time of 3.6 years.
Danny’s wife, Josie, a paraprofessional at Ironwood Elementary School in Casa Grande, was talking at work about how Danny might need a new kidney. Teacher Melissa Karman was walking by and overheard it. She said, “Oh, I’ll do it.” Josie didn’t know whether Melissa was serious. Agreeing to donate your body’s organs after you die is one thing. Agreeing to become a living donor is something else entirely. Donors undergo a psychological evaluation, blood tests, urine tests, a chest X-ray, an electrocardiogram, radiologic testing and a cancer screening. It takes days. Then, donors have surgery from which it takes weeks to recover.
Shortly after that conversation at work, in January 2017, Josie posted on Facebook that Danny needed a kidney donor or his future was grim. Melissa saw the post and completed the questionnaire that night. Two years earlier, one of her childhood friends had needed a kidney. Melissa could not help because her friend also needed a pancreas (which must come from a deceased donor). “In my head I had already processed that that’s something I would do. So when this came up, it was like, ‘no problem,’” Melissa said.
The Mayo Clinic invited Melissa to get tested to see whether her organ would be a match with Danny. Testing lasted four days.
Melissa was on the playground at Ironwood with kids when the Mayo Clinic called to tell her the news. She was a match.
“I screamed,” she said. “I just started shaking. I was running around. I went and found another co-worker and Josie and I was like, ‘I did it! We’re going to do it!’” At the end of the day Danny drove into the parking lot to pick up Josie. Melissa and Josie approached the car and told Danny the news. “I was in shock. I had just barely got on the list,” Danny said. Melissa was the only person who had been tested. It’s uncommon that a match is found that quickly.
Before a kidney a transplant, patients are given “general anesthesia” to knock them out. According to the Mayo Clinic, the surgeon cuts open the patient’s abdomen and places the new kidney inside. The patient’s existing, poorly functioning kidneys are usually left in place rather than removed. The new kidney’s blood vessels are attached to blood vessels in the lower part of the patient’s abdomen. The new kidney’s “ureter,” the tube that links the kidney to the bladder, is connected.
For a living kidney donor, the surgeon usually makes two or three small incisions close to the belly button and uses a camera to view the internal organs and guide the procedure.
Stella’s, Danny’s and Melissa’s surgeries were done at the Mayo Clinic, one of five transplant facilities in Arizona. The others are Banner-University Medical Center Phoenix, Banner-University Medical Center Tucson, Phoenix Children’s Hospital and St. Joseph’s Hospital and Medical Center in Phoenix.
Afterward the patient spends a few days in the hospital, but it will take weeks to recover. Patients need frequent checkups afterward and can expect to take several “anti-rejection” and other types of medications, some for life. Mayo Clinic doctors require prospective patients to have a designated caregiver and to stay within 15 minutes of the clinic after the surgery. The Garcias and the Lopezes stayed at Help In Healing Home, a care center next to Mayo. Josie took a month off work to serve as Danny’s caregiver, and Ramon served as Stella’s caregiver.
“There was nothing to it,” Melissa said of her surgery. “I had some pain and had to build my energy back up. I was tired a lot and I was sore, but it wasn’t anything I needed pain medication for. By the time I went to my four-week checkup I was fine.” Her brother came from Minnesota to serve as her caregiver for two weeks. After a couple of weeks she could walk without holding herself. “I just held a pillow when I walked. It helps the pain,” she said. She missed the last month of school.
With living donation, part of the risk/recovery is psychological. Will I regret doing this? How will I feel if the person to whom I am donating doesn’t live very long?
“I never had second thoughts. I was like, ‘Let’s do this,’” Melissa said as she rubbed her hands together. “I wish I could do it again. I’m O-positive (a common blood type) so I could help so many people.”
The chance for a successful operation is slightly better with a living donor, 97 percent vs. 96 percent after one year and 86 percent vs. 79 percent in five years, according to the Organ Procurement and Transplantation Network.
Danny, who had his surgery in May 2017, felt he was at full strength after about eight months and didn’t start working again until a year later. His medication (around 30 pills a day), he said, had him “in a daze.”
Because she had two transplants in one, Stella’s surgery lasted longer than Danny’s, about 10 hours. On the way to Mayo after that 3:30 a.m. phone call, Ramon was driving 90 miles per hour. He didn’t mind if he got pulled over because he thought it might result in a police escort. “I was so nervous,” he said. The long surgery went well, and Stella, as is her habit, made friends during recovery. She created a support group with other patients at the Mayo Clinic and stays in touch with them. They call her when they feel down, because a successful transplant doesn’t mean the tough times are over.
Danny returned to his job at Food City for 6 to 8 hours a week and eventually moved up to 25 or 26. He wanted to work more, enough to keep his health insurance, but he said Food City would not schedule him for the hours he needed. He lost his medical insurance at the beginning of this year, which left the Lopezes paying for 30 pills a day out of pocket. “The medication and stuff is expensive,” he said. “I have to pay for that myself.” He also needs blood tests every month. The Lopezes held a yard sale to raise money.
In January Danny started a full-time job as a dairy manager at Bashas’, so he hopes to regain health insurance soon.
Stella, who retired from CAC, suffers from plantar fasciitis, an inflammation of the foot. She walks short distances, but Ramon pushes her in a wheelchair for longer distances. She passed a kidney stone after her surgery. She has three kidneys in her body, and the stone must have come from one of her two natural ones. She goes to the bathroom a lot. “I don’t know how many kidneys I have working, but it’s more than one,” she said. She developed vertigo, so she can’t drive long distances. With her new liver, she can’t take Advil, Tylenol or Ibuprofen for pain. She can only use ointments. Yet, the Garcias feel fortunate.
“I always say, ‘I guess God wanted me to stay here for a reason.’ The doctors call me the Bionic Woman because I have been through open-heart surgery, a kidney and liver transplant, but you know I’m still here,” Stella said.
“God has been good to us,” Ramon said.
For a deceased person’s organs to be used for transplant, the person must be declared brain dead in a hospital with his or her body still functioning, and must not have certain diseases. After brain death, organ procurement organization professionals visit the hospital to check whether the deceased is suitable for organ donation. If the deceased is not registered as a donor, someone will notify the family and ask whether they want their loved one’s organs donated. If the answer is yes, information such as blood type and hospital ZIP code are entered into UNOS’ computer system to begin the matching process while the donor is taken to an operating room where the organs are removed.
Those organs will save someone’s life, someone like Stella or Danny.
In the years since 1984 the number of donors, transplants and people on the waiting list has grown, although the waiting list has grown much faster. In 1991, there were 6,953 donors, 15,756 transplants and 23,198 on the waiting list. In 2017, there were 16,473 donors, 34,770 transplants and 115,759 on the waiting list.
The waiting list is long because only 3 in 1,000 people die in the manner described above, according to the Department of Health and Human Services. Not enough people are registered to save every life. While 95 percent of American adults support organ donation, only 54 percent are registered, according to the Department of Health and Human Services. Slightly more than 3.5 million Arizonans are registered with Donate Life Arizona.
In 2006 Arizona began to allow people to register for organ donation at the DMV. Because the state issues driver’s licenses that are good until age 65, the donor list has not grown as fast as it could. “You don’t really need to go in and get a new license and get asked that question for a long time,” Leslie Brown, director of administration of the National Kidney Foundation of Arizona, told Cronkite News.
You might say “thank you” if a co-worker picks up a shift or a friend buys dinner. How do you thank someone who puts her life on hold for weeks to undergo medical tests and allow doctors to cut her body open and extract one of her organs? “Thank you” seems insufficient.
When asked whether she struggles with how to express gratitude to Melissa, Josie nods.
“Every day,” Josie said.
“They tell me that all the time,” Melissa said.
“We wouldn’t ever know how,” Josie said.
“There is no way to repay. For someone to do that for you, it’s extraordinary,” Danny said.
One way they say thank you is by promoting the cause. Melissa and Josie participate in events such as National Kidney Foundation walks to raise money and awareness. Danny posts anything he finds on Facebook. “I will talk about it with anybody mainly because I want to share it, and how easy it is,” Melissa said.
Danny also says thank you by not wasting his gift. “I tell my wife, ‘I don’t want to stay home,’” Danny said. “I want to go places. I don’t care if we just go for a day trip, I want to go see things. I didn’t get this transplant to stay home and feel sorry for myself.”
The Garcias volunteer with Donate Life, speaking to groups of people about organ donation.
“I’m very grateful not only to the doctors at the Mayo Clinic but also the person, and the family of the person, that donated their loved one’s organs,” Ramon said.
The Mayo Clinic invites organ recipients to write a thank you letter to the family of the deceased. The donor and the recipient don’t exchange names, but the Mayo Clinic asks donor family members if they want to meet the recipient. If both parties agree, they meet. The Mayo Clinic holds an annual event at which donor families and recipients get together. The Organ Donor Network holds a similar event.
“What can I write to the person who donated their organs?” Stella said. “How can I thank the family for something that’s so valuable. Thank you doesn’t do justice.”
A heart recipient Stella knows met the donor’s family and apologized for receiving the organ. The young man who died was 19, and the recipient was around 50. “I’m sorry I won’t be around as long as you want me to be,” he told the donor’s mother and grandmother. The mother asked the man whether she could listen to her son’s heart. The recipient said yes, so the mother placed a stethoscope against his chest and listened to the beating of her son’s heart.
“It’s a beautiful experience,” Stella said. | PW