Sybil Jackson has a big heart. “What keeps me going is the fact that, at the end of the day, I have made a difference in another individual’s life,” says Jackson, 35, a one-time manager for a group home for the developmentally disabled. What also keeps Jackson going is a life-saving gift she received on Memorial Day, 2009: A new heart.
Like many transplant recipients, news that she would need a new organ came as a shock. “I thought I just had pneumonia,” says Jackson, who, in 2003 – three months before her wedding – got a double diagnosis: Congestive heart failure and dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged and cannot pump blood efficiently. She was 27. “My doctor whisked me back into a room and asked, ‘Do you know how sick you are? You need a transplant. If you don’t get a transplant, you’ll be dead in five to ten years.’”
African Americans are disproportionately struck by heart disease and other life-threatening illnesses that may require transplant. Jackson’s older brother got the same diagnosis. Her father, who died when Jackson was five, had congestive heart failure and diabetes. According to the American Diabetes Association (diabetes.org), 3.7 million African Americans age 20 or older have the disease; they are 1.8 times more likely than non-Hispanic whites to get it; 25% of blacks between ages 65-74 have diabetes; as do 1 in 4 black women over 55. The American Heart Association (heart.org) states that diabetes increases the risk of heart failure and tends to cause hypertension and atherosclerosis. Diet change – from high-fat, cholesterol-packed foods to more greens, fruits, nuts, seeds, protein and fewer animal products – plays an enormous role in prevention.
Still, every year, thousands of African Americans need an organ, eye or tissue transplant. Like Jackson, some will be unaware of their disease until an out-of-the-blue diagnosis (1/3 of blacks with diabetes don’t even know it). Scarier still: Blacks are desperate for organs yet the number of organ donors is so low, people unnecessarily lose their lives. “Sometimes people don’t think of it because it hasn’t personally affected them,” Jackson says. “Don’t let a tragedy happen to you before you even consider it.”
According to UNOS (United Network of Organ Sharing; unos.org), there are 110, 288 people on the U.S. transplant waiting list. Between 1998 and today, 507 African Americans donated organs compared to 4,607 whites. This tragedy has sparked a worldwide epidemic. Transplants are more successful when a donor and recipient have the same ethnic background. And organ donors are a community of life savers. Says Jackson: “Why not help someone live so your loved one doesn’t die in total vain?”
Physician mistrust is a major reason donor numbers are so low. “It was a struggle for me too,” says Jackson. “I have always been a caregiver and a great advocate for others but when it came to myself, I was bad. I had to learn to speak up if I didn’t understand something or question things that I didn’t feel comfortable with…You know your body, you are the boss. If you still don’t agree, always get a second opinion. And it is always helpful to take someone with you to an appointment in case you miss some information. A good doctor will want you to challenge them and not be offended. If so, get away.”
In April, Jackson will enroll at Bellevue University to earn a Bachelor’s Degree in Behavioral Science and a Masters in Clinical Counseling. She intends to work with people with traumatic illness, developmental disabilities and transplant families. “I never had any interest in organ donation until it affected me and because it affected me, it affected other people. The day I got the call that a heart was available I was at a bar-b-q. I freaked out. I was like, ‘I’ve got to go!’ After I left, everybody was in tears and many of them said, “I’m going to be an organ donor.’ Being there when I got the call, they realized, ‘This is what it’s about.’”
For more information, please call Donate Life Nebraska at 800.718.5433.
By Joey Hoffman, originally printed in the Omaha Star