'A Lesson for My Kids'
By Carla Garnett
On the Front Page...
Three years ago, Calvin Jackson thought it was probably a good idea to become a bone marrow donor. These days, just a short time since he donated, he says it's a great idea, and that he'd do it again without hesitation.
In 1996, Jackson, broadcast reporter for the Radio News Service in NIH's Office of Communications, was working on a story about bone marrow transplantation. While collecting information, he learned a lot about the promise of the therapy to treat serious and life-threatening disorders. He also found out quite a bit about how the transplantation process works. More complex than a blood transfusion, the two procedures are nevertheless similar in one fundamental way: It takes two -- donor and recipient -- to tango, so to speak. For successful marrow transplantation, however, a person's genetic makeup is of paramount importance. The tissues of donor and recipient must be compatible in order for the transplant even to be considered.
Potential bone marrow donors volunteer to give blood samples that are tested, typed and kept confidentially on file at a national registry. Battling illness, potential marrow recipients hope to find a type match, first among their own blood relatives, then among the registry files. Complicating matters, however, is the fact that recipients are more likely to match donors belonging to the same racial and ethnic group. Chances of finding a suitable match are small indeed, Jackson learned, but the chances of minorities finding a match are rarer still. What's more, far fewer members of minority groups take the steps necessary to become an eligible donor. According to the National Marrow Donor Program (NMDP), 3.2 million volunteer marrow donors were registered as of June 30. Caucasian donors make up more than 1,885,000 of the registered volunteers; African Americans account for over 255,700; Hispanics, more than 238,000; Asian/Pacific Islanders, more than 189,000; and American Indians/Alaska natives, just over 43,500. Donors of multiple ethnic origins and those of unknown race account for more than 646,000 of the volunteers listed in the registry. By June 30, NMDP had coordinated more than 7,200 unrelated transplants, 961 for minority patients.
"Recruitment continues to be a focus for the NMDP," reports Robyn Ashton, coordinator of NIH's Marrow Donor Center, one of nearly 100 donor centers in the NMDP network. "At any given time, about 3,000 patients are searching the NMDP registry for a compatible donor. At the NIH center, which is nearly 11 years old, we have facilitated 184 marrow collections/transplants. I have personally been involved in all but the first 12."
Digesting this, Jackson, an African American, decided to have his blood tested and placed in the registry. Months, even years went by. No one from the registry contacted him. Eventually, his impulsive decision faded from memory.
"'A blood test,' I thought, 'that's simple enough,'" Jackson says, recalling his decision.
"At first -- when I didn't hear anything back -- I figured my blood must be so unique that it won't match with anyone," he continues, jokingly. "After awhile, I really forgot that I had given the sample. Then, late last fall, I received a call. 'You're a potential match,' they said. I didn't hesitate to say I'd donate."
The next step after the initial blood sample is -- another blood sample. This one would detect another level of compatibility between the two -- tissue-typing or antigen matching; Jackson and the recipient matched six out of six antigens -- a very rare occurrence. Then came a complete physical for Jackson. He passed, hale and hearty. Following that was the donor's last chance to change his mind.
"They sent me a detailed consent form," Jackson says. "They explained that after I signed it, they would begin to give massive doses of chemotherapy to the recipient. It would leave him vulnerable to all kinds of diseases and infections. They would be basically destroying his immune system, so they could replace it with mine. After the transplant, he would have my blood type, my allergies...luckily I'm pretty healthy and not allergic to anything. Although I had no intention of changing my mind, once they explained what the recipient was facing, I knew I had to go through with the donation."
The only thing left was the actual donation, a procedure done in an operating room. Jackson and his wife Patricia had already met with Ashton for a question-and-answer session about the procedure.
"My wife had more questions than I did," Jackson recalls. "I just wanted to do it and get it over with. I really wasn't that interested in knowing a lot of the details. We also talked it over with our three kids. We wanted to emphasize that even though I was going into the hospital, I was not sick. We told them that it was important sometimes to do things for other people without thinking about any reward. We used it as a lesson. As you would expect, they all reacted differently. My oldest, who's 11, said he was glad someone was doing it, but that he was glad it wasn't him! I had to keep reassuring my 9-year-old daughter that it wasn't going to be dangerous for me. My youngest son couldn't have cared less."
For Jackson, the hardest part was the wait to donate. His procedure was postponed twice -- both times because the recipient contracted an infection, or was otherwise too sick to receive the life-saving marrow transplant. When Jackson was finally called for his visit to the hospital, he remembers being focused and having a little talk with himself: "I had been feeling sort of like a pregnant woman must feel in her tenth month," he jokes. "I was just ready for it to happen.
"Then I started to think more about the emotions that [the recipient] must be experiencing," he continues, sobering. "All I was allowed to know about him was that he was 45 years old and had leukemia. None of his blood relatives matched his antigens as well as I did. At least one of his siblings had been tested and had not matched with him. 'I'm healthy,' I said to myself. 'No matter how this turns out, I'm going to be fine. I may have to reschedule a few things, put some other things on hold to do this -- but after it's all over, I'll still be healthy. Nothing will really change for me. But this man will still be fighting for his life.' It gave me perspective."
Donor and recipient had exhanged anonymous letters just before the donation. The recipient expressed his deep gratitude to Jackson for making this sacrifice of time and convenience. In his note, Jackson told the man -- whose name he doesn't know but whose life he may be saving -- that he was happy to give him this chance at health and that he hopes all goes well.
In hindsight, Jackson recalls that the donation went smoothly. He was admitted to Georgetown University Hospital before dawn one morning, after spending the night in a downtown hotel. He was introduced to the anesthesiologist who would administer the epidural and monitor him throughout the hour-long marrow extraction. He remembers being wheeled into the operating room and coming face-to-face with the arched table upon which he would lie face down. The epidural did its job, numbing him from the waist down. Jackson recalls hearing muffled voices, then drifting off to sleep. Midway through, he thinks he heard the doctors tell someone to go inform Patricia that "we're halfway there."
Afterwards, Ashton -- who was at the hospital throughout the procedure, even monitoring the marrow collection in the operating room -- showed him his donation: 1,200 milliliters (just over 2 pints) of bone marrow. It looked like little more than 2½ plastic I.V. bags of dark red liquid, roughly the consistency of molasses. Jackson's part was over.
"I remember having a slight backache," he says. "That's about it. I also had to stay overnight in the hospital, due to a slight reaction to the epidural. However, the whole thing was not nearly as dramatic or as painful as I had imagined. I want to let people know that there is a tremendous need for more people to register. It is especially urgent for African Americans, because it is harder for Blacks to find compatible matches. I would definitely do it again."
For more information on becoming a bone marrow donor, contact the NIH Marrow Donor Center at 496-0572.
Up to Top