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Sunday, May 16, 2021

Thousands wait for donated organs

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When she was 20 years old, Cammi Jackson’s life changed forever. 

“My body started swelling — my eyelids, feet and stomach. I went to the emergency room and they ran tests, and there was protein in my urine.” Doctors sent her home with a prescription for water pills. Two weeks later, she was back in the ER. This time, she learned she was expecting a child. 

What should have been an exciting time soon soured when she miscarried eight weeks into her pregnancy. Her kidneys then began to fail.

“They put me on Prednisone,” she said, referring to the synthetic corticosteroid used to treat a variety of autoimmune diseases. “It wasn’t working so (five months later) they began emergency dialysis.” The process involved having a catheter inserted into her chest during a two-week hospital stay before being moved to a permanent dialysis clinic. She has been having the procedure regularly since. 

“I was actually at the hospital with her when they said it,” said Denise Jackson-Dowdy, Jackson’s mother. “It must have been apparent to them that it didn’t register to us, because after they said it, they left the room and gave us time to process. Due to being ignorant of the disease itself, it didn’t affect me immediately. Once I studied up, it became easier to accept.” Jackson-Dowdy recalled then that her daughter’s grandfather had kidney disease and was on dialysis for 27 years before passing away.

Life for the family has “changed tremendously,” Jackson-Dowdy says. “Even though (Cammi is) an adult, my life is not mine. She’s not married and doesn’t have any children, so I feel solely responsible for her when she’s ill, so I’m limited in some ways.” 

Jackson’s stepfather Willie Dowdy, who describes himself as Jackson’s “guardian angel,” said watching her go through these issues is tough, but he sees her as victorious. “She’s the pain queen to me; she’s been through a lot,” he said. “She holds her own.”  

A typical week for Jackson, now 29 years old, includes three sessions of hemodialysis, during which a machine and a special filter known as an artificial kidney are used to clean her blood. Each session is three-and-a-half hours long and begins at 4:30 a.m. Beyond the time commitment, Jackson has experienced a host of health challenges related to her renal failure. In addition to enduring 16 operations over the past nine years, she has high blood pressure, high cholesterol, a hyperactive thyroid and takes medicine for each ailment. Her appearance has changed, as well. Her skin has darkened, she is tired all the time and, pointing to a raised scar on her arm caused by the dialysis needles, she remarked that the warmer months are especially difficult, as she doesn’t like to wear short sleeves.

It has affected her personally, as well. “I don’t have a life,” she said. Jackson said her friends and family, although they don’t understand everything she goes through, have been supportive. “They don’t like seeing me down. They do things to help me get my mind off it.”

This weekend, as they’ve done for several years, the Jackson clan will gather downtown on the Canal for the annual Kidney Walk, put on by the National Kidney Foundation. For them, it is a time to stand in solidarity with their sister, niece and daughter and help spread awareness to others in the Black community about the need for organ donation. 

“The lack of education is killing our Black people,” said Jackson-Dowdy. “The statistics show clearly that whites are more likely to receive donations than Blacks. So if nothing else, I’d suggest people pick up some literature and educate themselves,” she said. “Once you know better, you’ll do better, but if you don’t know, then you just don’t know, and it’s hurting us.” 

 

A growing need 

Currently, more than half of the people on the national transplant waiting list come from communities of color; 35 percent are African-American, a population that is three times more likely to suffer from end-stage renal disease than caucasians. While transplants can occur across racial or ethnic groups, success rates are increased when recipients receive organs from donors who are of the same ethnicity.

Clyde Rainey, community relations coordinator with the Indiana Donor Network (IDN), said there are a number of myths and negative experiences that may contribute to the lack of donors, though to say Blacks don’t donate at all is a misnomer.

“What happens in communities of color is that we are in more of a need than there are donors,” he said. “A couple of the reasons we aren’t donating come from an earned mistrust of the medical community.” Rainey cited examples like the Tuskegee Experiment, during which hundreds of Black men living in the South, many infected with syphilis, were unknowingly and purposefully left untreated so researchers could observe the effects the disease. He also noted the story of Henrietta Lacks, a Black woman who died of cervical cancer and had cells from her tumor stolen from her. The cells, which were remarkably durable, were used to create an “immortal” cell line sample known as HeLa. HeLa cells went on to be used as the basis for modern day medical advancements and were purchased by nearly every major pharmaceutical company on the planet.

Rainey also noted that there are lots of myths in the Black community when it comes to organ donation. “People feel like when you become an organ donor that when you’re in a car crash, and an organ donor, you don’t receive adequate care as others would,” he said, adding that this is simply not factual. 

What is true, he noted, is that Black people and other communities of color must become more aware of the issue. IDN is working on a variety of community events and activities to raise the level of consciousness around donation.

 

The ins and outs of organ donation

IDN, one of 58 designated organ recovery organizations in the U.S., works alongside hospitals, the families of donors and other organ recovery groups to fill the ever-growing need for organs and tissue. Most registrants who agree to become donors come through the Bureau of Motor Vehicles; when receiving a license, permit or identification, Hoosiers are asked if they would like to be donors. 

According to IDN data, nearly 1,500 Hoosiers and more than 120,000 people nationwide are waiting for life-saving organ transplants. In the U.S., another person is added to the transplant waiting list every 10 minutes. Each day, 22 people (on average) in the nation die because a donated organ wasn’t available in time. One organ donor can save the lives of roughly eight people. While most tissues — such as heart, lungs, intestines, bone and skin — can only be procured from deceased donors, kidneys can come from donors who are still living. 

“(Donation) is huge for (people with kidney disease), especially the patients who are on dialysis,” said Andy Arrendale, renal inpatient care manager for Fresenius Kidney Care.

“Once they receive a transplant, they’re pretty much able to resume their regular life … and get back to the things they love.”

The kidney donation process begins when a patient is put on the United Network of Organ Sharing (UNOS) list. The wait time can be as long as 10 years, depending on geographic location. Currently, there are over 90,000 people on the waiting list for a kidney transplant.

 

Life after and hope to come

For husband and wife Stephen and Stephanie Quick, life after kidney donation has been better. Stephen was on the list for six months before receiving a kidney from his wife in 2006. “I would tell people to have their family members get tested to see if they’re able to be a donor. That’s a real personal choice,” he said. “I knew people whose family members were a match but wouldn’t even go through with the surgery. … I would’ve done it in a heartbeat, but some people aren’t like that.”

Stephanie said there was no hesitation on her end. “I’m a living witness that you can live with one kidney. I have not had any issues at all; it’s the greatest gift you could give someone,” she said.

Betty Mayes Morris, who received her kidney transplant from a deceased donor in 2004 after being on dialysis for 18 months, said her life has changed in many ways since. “I worked for a year after my transplant but was unable to stay employed because my employer had to keep the workplace so sterile,” she said. Mayes Morris, who was cleared for disability assistance soon after, said that though she is on a number of medications to maintain the health of the donated organ, her quality of life has improved, as she is no longer required to be on dialysis.

For Renita Peck, that quality of life is one that she is actively working to have for herself. Peck, who was first diagnosed with kidney disease in 1998, was able to keep the condition in check with medication before going into renal failure in 2011. She has since been on the waiting list and began dialysis last year.

“It’s a challenge to find people who want to give one of their kidneys. There’s a stigma in the Black community about wanting to be ‘buried whole,’” she said. Peck has had personal conversations with friends and coworkers, many of whom have gone to get tested to see if they are a match. Recently, a close friend underwent the initial testing, and it looks to be promising. “She is the first person to get that far,” said Peck. “It really makes me feel loved and appreciated that they’re willing to sacrifice for me.”

Cammi Jackson and family, are still hopeful that there is someone out there who can make this sacrifice for her. 

“She has been on dialysis for eight years, and we know at least eight people who have received transplants,” said Jackson-Dowdy, recalling names of recipients like Alonzo Mourning, Natalie Cole and even close friends and family. 

“Some had fortune, some had fame and some are everyday people like myself. But we have faith, and we’re still anticipating a kidney at any moment.”

 

For more information on organ donation, visit indianadonornetwork.com and kidneyregistry.org.

 

Indianapolis Kidney Walk 

  • Date: June 10
  • Check-in time: 8:30 a.m. Start time: 9:30 a.m.
  • Where: Eugene and Marilyn Glick Indiana History Center and The Canal
  • Visit donate.kidney.org to register

Cammi Jackson, 29, has lived with kidney disease for nearly a decade. She is currently on the waiting list for a transplant.

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