Miriam E.Tucker
Portraits of Bone Marrow Donors
(Written in 2001)
Think Washington is full of greedy politicians, sleazy lobbyists, and self-centered yuppies? Actually, altruism is alive and well around the Nation’s Capitol. Some of your neighbors have devoted time and endured personal discomfort to give of themselves—literally—to help others in need.
Some guys will do anything for a date. Even get stuck with a needle. It was the summer of 1990. When Bill Pugh called Lisa Orange to ask her out, she already had other plans. She was going for a blood test to see if she was a potential bone marrow donor for a 20-year-old Bethesda woman named Allison Atlas who had leukemia and needed a transplant.
"Want to come along?" she asked Pugh. "Sure," he answered, not giving it much thought.
Atlas never did find a well-matched donor, despite a massive drive organized by her family. She died in 1993 after receiving imperfectly matched bone marrow from her mother. But, people who had their blood tested for her were entered into a national database. Since then, many have donated to other patients in need.
Pugh got the call last summer. His tissue type had matched that of a 29-year-old woman with leukemia. She is still alive today because he agreed to be sedated and positioned face down on an operating table while surgeons repeatedly inserted needles into both sides of his pelvic bone—just above the buttocks—to extract his bone marrow.
Some may cringe at the thought, but Pugh says it was no big deal. “The only painful parts were having two sandbags stuck under my back for 6 hours, and pulling off the adhesive tape…other than that, it was only a dull ache,” says Pugh, who lives in Kensington with Orange—they married in 1994—and their two children.
Pugh, 39, was back to work as a computer science professor at the University of Maryland three days later. Although it was a few weeks before he could throw his three year old son up in the air again, he didn’t need to take painkillers after the first night.
“It was perhaps the easiest way I’ve ever been able to make such a difference for somebody…You don’t get many opportunities to save someone’s life.”
Allison’s Legacy
For patients with leukemia and other severe blood diseases, a transplant of blood-manufacturing stem cells, contained within bone marrow, is often the only hope. About 30% of these individuals have a family member whose body tissue type is a close enough “match.” The other 70% must turn to bone marrow registries, and to the kindness of strangers.
Tissue matches are much more likely between people of the same ethnic or racial background. The drive for Atlas, who was Jewish, initially focused on DC’s Jewish community. But it quickly broadened nationwide and overseas, ultimately adding more than 50,000 names to the federally-funded National Marrow Donor Program (NMDP) registry, nearly doubling its size at the time.
Today, the Minneapolis-based NMDP lists about 4.2 million potential donors. At any given time, about 3000 patients from around the world are searching its database, looking for a match. Minorities are vastly underrepresented. Caucasian patients have a 70% chance of finding a donor, compared with only 30-40% of African-Americans.
The odds of any one individual in the registry matching a patient are pretty small. But, for healthy people who do end up matching and donating their stem cells, the lifesaving experience is emotional and thought-provoking. But not, according to many, heroic. Says Pugh: “It was too easy.”
A Maximum Effort
Like Pugh, Washington attorney Judith Schaeffer, 48, also donated her bone marrow almost a decade after being screened for Atlas. Upon learning in March 1999 that she was a match for a 25-year-old European man with leukemia, deciding to donate was the easiest part.
“The decision was simple. It was a moral imperative,” says Schaeffer, who lives with her female partner in Alexandria.
Her donation procedure wasn’t so simple. Donors typically give one or two units of their own blood to be re-infused during the procedure. Because Schaeffer’s veins are tiny and inaccessible, she had to do it in several steps, over a two-week period. Despite taking iron pills, she was quite fatigued.
“I got through it by thinking about the recipient and what he was going through. This was nothing compared with that,” she recalls.
Indeed, in the week or two prior to the donation procedure, doctors begin killing off the patients’ own diseased bone marrow with heavy doses of radiation and/or chemotherapy. That’s what “cures” their disease, but they will almost certainly die without a “rescue” from the donor’s stem cells.
Although she thought about her recipient constantly during and after the procedure, Schaeffer didn’t know his name or even what country he lived in. That information is kept secret—per the rules of the NMDP and its sister registries—in order to prevent coersion in the event that the recipient needs more stem cells.
Donors do receive periodic updates on their recipients’ condition, and they are allowed to exchange anonymous letters. In the U.S., donors and recipients may learn each other’s identities after a year if both agree.
Schaeffer named her recipient “Max” because “I wanted to think of him as a person, not just as a leukemia patient.” They exchanged a few letters—His were mostly in German, but one did arrive in fractured English. “His English wasn’t very good…Then again, I can’t write anything in German,” she says.
A few months after the donation, Max developed an infection and needed more stem cells that would engraft, or “take” very quickly. This situation calls for a newer procedure called peripheral blood stem cell (PBSC) donation. Here, rather than having a needle injected into their bone, donors are given shots of a drug that causes the bone marrow to release stem cells into the bloodstream.
The stem cells are then removed from the donor’s blood by an apheresis procedure, in which blood is removed from a needle in one arm vein, flowed through a centrifuge that removes the stem cells, then returned through a needle in the donor’s other arm.
Since PBSC donation is less risky for most donors, it is expected to one day replace bone marrow harvest as the method of choice for obtaining donor stem cells if data prove that the outcome for patients is similar.
Schaeffer’s tiny veins made the apheresis procedure impossible. So, a catheter was placed in her femoral vein—in her groin—to remove the stem cells. The NMDP doesn’t like to do that to healthy people, but she had insisted. “I was heartbroken that Max was so ill, and I would have done everything I could.”
She even found an upside to the otherwise extremely unpleasant procedure, which lasted for 4 hours each on 2 consecutive days: “At least I had the use of my arms.”
Despite Schaeffer’s efforts, Max died shortly thereafter. “I was grief-stricken. It was like losing a member of my family.”
Still, she feels overwhelmingly positive about the experience. “He had an extra year of life that he may not have had…It was the greatest blessing of my life. I would do it again in a second. I can’t think of anything more important that I’ve done.”
Stepping up to the Plate
Both Schaeffer and Pugh are fairly stoic when it comes to needles and medical procedures. That’s not true of 32-year-old Chevy Chase financial advisor Ira Greenspan, who had almost fainted when he was tested for Atlas. He’s still pretty needle-phobic, although he’s learned to tolerate them as he’s gotten older. “I get very upset by needles, but I get by. You have no choice.”
Despite that discomfort, Greenspan didn’t hesitate when called to donate his bone marrow. “Someone’s life depended on it. If I needed it, I’d want someone to step up to the plate for me.”
Greenspan’s mind was racing as he sat in the hospital, waiting to undergo the surgery. “I was worried I might have back pain the rest of my life, or that I wouldn’t wake up from the anesthesia…Here I was, surrounded by people who are there for serious things, and I’m there because I’m healthy. I thought that was really weird.”
Greenspan had a rare complication during the surgery. When the anesthesiologist pulled out the endotracheal tube, his larynx went into a spasm, temporarily cutting off his breathing. It was treated immediately and he’s fine now, but all the medications pretty much knocked him out for four days afterward.
Did the episode scare him from ever donating again? “No, I would just tell the doctors about the spasm thing. I know what to expect this time.” This, from a man who “freaked out” when his wife broke her ankle a month before his bone marrow donation.
Despite bravely facing down his own fears to help his recipient—an older man who is doing well so far—Greenspan doesn’t meet his own rigorous hero criteria. “A person who pulls someone out of a burning car right before it explodes, that’s a hero….It was an act of kindness, maybe, but not a heroic event. Nothing blew up.”
A Christian Life
The great need for minority donors was partly what motivated Sam Francis to get screened about three years ago during a drive held at the Metropolitan Baptist Church in Northwest DC, where his wife Carolyn is a minister.
“I was saddened to hear that many African-Americans, especially males, were not coming forth for testing,” says Francis, 58, an accountant with the Federal Communications Commission.
His decision to donate was based on another—and equally important—factor. “As a Christian, I believe in trying to be Christ-like. This is something Jesus would have done to help another.”
Francis’ recipient, a 9-year-old boy, didn’t make it. But, Francis comforts himself with the thought that the boy, who had been ill for a long time, “had a chance to run and play again once he received the marrow, and his parents could enjoy that one more time.”
In a strange and sad twist of fate, a letter written by the boy’s parents shortly after the transplant expressing their gratitude to Francis was inexplicably delayed, and didn’t reach him until last December, 7 months after the procedure and 4 months after the boy’s death.
Francis is still trying to bring himself to write back. “It’s been rough, but I promised myself I would complete it.”
Meanwhile, he’s working with his Prince Georges County fraternity, the Gamma Pi chapter of Omega Psi Phi, on an initiative to encourage more African-American men to become donors. “I think they’re afraid, not knowing the outcome,” Francis says. “But fear has no place if you lead a Christian life.”
The Little Warrior
Duane Swinney, 39, felt like he “won the lottery” when he learned that he was a potential bone marrow match for a 10-year-old California girl with leukemia.
He had been screened in 1999 during a drive sponsored by the Merrifield, Va. post office, where he works the night shift as a clerk. “I can’t thank them enough for that. It was really a gift for me,” Swinney says.
In the days leading up to the procedure, he couldn’t stop thinking about what was happening to the girl: Radiation and chemotherapy that—if she survived it—would rob her of her hair, and of her ability to ever have children.
“Now, you’re thinking about this child who’s almost lifeless, and you realize it’s not a perfect science. Sixty percent don’t make it. I was thinking that if this didn’t work, I’d really be a wreck.”
Back home from the hospital that evening, he was sitting at his computer when all of a sudden “I felt more peaceful than I ever had in my life. It was weird, almost like floating. I wondered if that was the moment they were dripping the marrow into her.” (It may well have been, since the marrow is rushed to the patient as rapidly as possible.)
After 30 long days—NMDP rules dictate that no information be released sooner—he got word that the marrow had engrafted and the girl was slowly recuperating.
Earlier this year, Swinney, his wife, and 6-year-old daughter traveled to Disney World to meet the girl and her parents. The two families spent the day together. “I was nervous at first, but the whole thing was easy. The hardest part was saying goodbye.”
He now talks with her parents every few weeks. “It’s hard, knowing this cancer stuff is something she’ll have to deal with the rest of her life.”
Since then, Swinney has thought about doing volunteer work. “It felt great…So now I’d like to go out and find something else so I can get that feeling again.”
But don’t call him a hero. “You know who the hero is? The 11-year-old girl who had every ounce of life drained out of her…The [parents] who selected this course of action, fully knowing that their daughter might not come out of it alive. The heroes are the mom, dad, and the little warrior.”
Blood Brothers
For Paul Jackson, it was all just meant to be. One night in 1995, he was watching TV when he saw an infomercial about bone marrow donation, and “I just felt instantly that I was supposed to do that.”
So Jackson was hardly surprised when, about two weeks later, he discovered a bone marrow drive being held right where he was working at the time—the naval base in Norfolk. He simply walked across the pier and joined.
“They say God speaks to you…There aren’t a lot of instances in life where you can consciously say that you’re paying attention to what you’re being told to do,” says Jackson, 43, now a technical analyst with WorldCom in Fairfax.
When Jackson’s recipient first called him—a year to the day after the transplant—he said, “Brother Paul, do you like watermelon?” Jackson replied that he loved watermelon. In fact, he grows it next to his house in Landover, Md. His recipient said, “I knew it. Before the operation, I couldn’t stand watermelon. Now I can’t get enough of it!”
Such stories are common. After all, once stem cells are transplanted, the recipient’s blood is thereafter genetically identical to the donor’s.
Soon after, the recipient flew Jackson and his wife to California for the recipient’s 50th birthday party. But, Jackson was the guest of honor. In fact, the recipient and his family made such a fuss over Jackson that he became a bit embarrassed.
“I kind of feel like I owe them something, they were that kind to me,” he says, without irony.
Giving Back
Anyone who knows Janet Schoengold, of Derwood, Md., would say she’s a “giver.” A platelet donor since the mid-1970’s, she was among the first group of people to be entered into the NMDP registry when it was established in the late 1980’s. Platelet donors were easy to enroll because their tissues had already been typed.
“I said sure, and signed on the dotted line,” recalls Schoengold, 45, who was a lab technician at the time but is now a part-time accountant and full-time mother.
Schoengold had already saved or prolonged countless lives with all the platelets she had donated over the years, but finding out that she was a potential bone marrow match in March of 1998 was different. “You sort of feel picked, or chosen. Out of thousands in the registry, I’m the one that matched. It’s a very special kind of feeling.”
But the experience wasn’t ideal. The procedure caused an unusual amount of bruising in her lower back, which still remains somewhat painful. And her recipient—a 47-year-old man with a particularly lethal bone marrow disease called aplastic anemia—passed away.
Earlier this year, she got another call. This time, she matched a three-year-old West Coast girl with leukemia. Schoengold feared that her back couldn’t withstand another bone marrow harvest, so she gave PBSCs instead. She’s now waiting for an update on the girl’s condition.
With some sadness, Schoengold has now decided to withdraw her name from the registry. “I don’t bounce back like I used to,” she says. But, she continues to donate platelets and to pursue another of her passions: Tutoring first-graders at Sequoia Elementary School in Derwood.
She feels that the opportunity to donate her stem cells came at just the right time in her life. “Once I hit 40, my life began to even out…My children are healthy, my marriage is stable…I have a great life. I reached a point where I was ready to give back, and I like giving back.”
So, does Schoengold see herself as a hero? Of course not. “I’m just a human. I can’t imagine…If no one ever gave anything of themselves, what kind of a world would we live in?”
GIVING WAYS
Bone marrow/stem cell donation: For information about joining the National Marrow Donor Registry, go to www.marrow.org
Friends of Allison accepts donations to cover the cost of tissue typing: P.O. Box 34497, West Bethesda, MD 20827-0497. www.friendsofallison.org
Platelet and other blood component (apheresis) donation: The American Red Cross operates apheresis centers in DC, Fairfax, VA and Frederick, MD. For appointments, call 1-800-272-2123. www.redcross.org
National Institutes of Health Platelet Center, Bethesda, MD: 301-496-1048 ###