CHICAGO – Although Kelvin Martin was diagnosed three times with congestive heart failure, he didn’t believe the doctors because he was still a very active 25-year-old.
How could he have a medical condition that he didn’t think African Americans, especially young African Americans, could have when he was still able to run and do all the things he was able to do before?
But the seriousness of the condition became more clear to Martin, who is now 35, as he had three heart attacks after his diagnosis and lived for nearly three years on a left ventricular assist device (LVAD), before receiving a heart transplant in January. Martin said he lacked knowledge about heart disease, and didn’t start learning about transplantation and organ donation until he was introduced to Gift of Hope, a nonprofit organ procurement organization that coordinates organ and tissue donation and provides donor family services and public education in Illinois and Northwest Indiana.
“If someone explained to me you’re going to feel good right now but as you move around more, you’re going to get to this point…I would have [understood] if it was explained to me in detail,” said Martin, of Bolingbrook.
The husband and father of a 5-year-old son now understands and educates others, including his family members, about heart disease and the importance of organ donation. And he will help tell “The Never-Ending Story” of donation by joining 29 other people from across the country to ride on the Donate Life Rose Parade Float in the 2015 Tournament of Rose Parade, which will feature floral floats, marching bands and equestrian units, leading up to the Rose Bowl college football game, held in Pasadena, California on New Year’s Day.
Organ donation is very important “because you don’t know when you’ll be in that situation or a family member in that situation,” said Martin, who said he’s very grateful to even have been selected to be on the Donate Life float in the Rose Parade.
Like Martin was, a lot of African Americans are in need of organ donation and transplantation, but even fewer are giving. While African Americans make up 29 percent of the more than 100,000 patients on the national organ transplant waiting list, they account for 14 percent of all organ donors, according to data from Gift of Hope.
African Americans are not registering as donors because there’s a perception that minorities do not have equal access to organs for transplantation, and some have a mistrust of medical establishments and institutions, afraid that they will not receive the best medical treatment in a life-threatening emergency if they were a known organ donor, according to organ donation officials.
Historically African Americans have distrusted the medical community based on experience or reliable information, i.e. the “Tuskegee Study of Untreated Syphilis in the Negro Male,” where Black men were misled and never given adequate treatment for their illness during the study conducted between 1932 and 1972.
Gift of Hope, which is also part of Donate Life Illinois – a coalition of agencies responsible for organ, tissue, eye, blood and marrow donation, and donor education and registration in Illinois- wants to change the perception and mistrust with outreach and education.
“Modern medicine has evolved,” said Marion L. Shuck, Gift of Hope’s manager of community affairs. “Nobody knows you’re an organ donor until after all possibilities to save your life have been done. Gift of Hope has a relationship with the hospitals and do a lot of education with the hospitals. Health care is more patient-focused, so you understand the whole patient.
“Helping the community understand donation is needed, and to register and have that conversation with family,” Shuck said.
To become a donor, visit www.giftofhope.org.