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— Flannery O'Connor






Leukemia Society Director Practices What She Preaches


Bone Marrow Donation

Eligibility: Anyone who is 18 to 60 years old and in good health, and who gives a blood sample for testing, may register as a potential donor. You must be willing to donate to anyone, anywhere.

Cost: The blood test costs $ 80. In Rhode Island, health insurers are required to pay this cost. A federal grant pays for typing donors of Native American Indian, African, Asian or Hispanic background. Free testing drives are occasionally scheduled by community groups.

Statistics:

  • 4.2 million donors are registered nationally
  • 26,422 donors are registered in the Rhode Island area
  • 11,710 transplants have been completed since October 1986
  • 75 percent of those transplants were to treat leukemia
  • 65 Rhode Islanders have donated
  • 70 percent of those who need bone-marrow transplants cannot find a match within their families.
  • 3,000 patients are searching for donors at any given time. Members of minority groups are least likely to succeed.

For more information: Call the Rhode Island Blood Center at 453-8360 or the National Marrow Donor Program at 1-800-MARROW-2.

Sources: Rhode Island Marrow Donor Program; National Marrow Donor Program

By FELICE J. FREYER
Journal Medical Writer

Imagine learning that you — and only you can save a stranger's life.

Then imagine that the person you can save has the very illness to which you have devoted your career.

That's what happened to Lynn Aaronson, executive director of the Leukemia & Lymphoma Society of Rhode Island. Aaronson found out that her bone marrow cells are a match for a man who, without them, will die of leukemia.

Once she got over the shock, and agreed to the donation, Aaronson decided to take it a step further: she would give up her cells in public, before TV cameras, to show the world what marrow donation involves, and to encourage others to do the same.

And that's how it came to be, one recent morning, that Aaronson in a recliner at the Rhode Island Blood Center, her arms upturned and immobilized at her sides bantered with photographers and reporters as blood flowed out of one arm, through a machine that spun and rattled like a clothes dryer, and back into the other arm. This is one of two ways to extract marrow cells.

"I called my dad. 'Is there something you want to tell me?' " she jokes, referring to the match between herself and a total stranger. " 'Do I have a brother I don't know about?' "

The machine, which is smaller than a clothes dryer, is a centrifuge that extracts the stem cells, which are produced in Aaronson's marrow and circulate in her bloodstream. Stem cells are the precursors to all blood cells. Each one can produce any type of blood cell.

***

AFTER ABOUT a half-hour, a salmon-colored liquid begins to collect in the bottom of a clear bag attached to the centrifuge. Those are the stem cells, tinged with some stray red blood cells.

The recipient of this gift needs those cells because his entire marrow and his body's ability to make blood cells is being destroyed by high doses of radiation and chemotherapy intended to kill the cancerous cells in his blood stream.

Once Aaronson's stem cells are pumped into his veins, if all goes well, they will migrate to the bone marrow and set up cell-making operations there. The man probably has a 40 percent to 50 percent chance of being cured of his leukemia.

"It's odd that I work for the betterment of all blood-related cancer victims," remarks Aaronson, who wore her Leukemia & Lymphoma Society T-shirt on donation day, "and now there's a chance for me to help one particular one. It's awesome to know that you have the potential to save someone's life."

Aaronson knows very little about the person she may be saving. He's a man with leukemia who could be living anywhere in the world. The National Marrow Donor Program has strict rules about confidentiality, to protect both donor and recipient. To ensure confidentiality, Aaronson asked the media covering her donation not to reveal when it occurred, lest the recipient hear about it and draw the connection.

Aaronson will get regular progress reports on him, however, and will know if he dies. After a year, if they both agree in writing, donor and recipient can meet.

Aaronson first gave a blood sample and registered as a bone marrow donor about two years ago when the Jewish community was holding a registration drive on behalf of Julie Gutterman, wife of Rabbi Leslie Gutterman. The rabbi's wife, who had leukemia, never found a match, and died in 1999.

Not long afterward, Aaronson was hired as executive director of the Rhode Island chapter of the Leukemia & Lymphoma Society. Her blood sample remained on file with the National Marrow Donor Program.

On Oct. 11, 2000, Aaronson was at a national conference of the society when she received a call from her daughter. "Are you sitting down?" she was asked.

She learned she was a possible match for marrow donation.

***

FOLLOWUP TESTING revealed that she matched the man in need as well as an unrelated donor can. Doctors look for a good match to lower the risk that the recipient's body will attack the donor cells as if they were an infection, a process known as rejection, or that the donor's cells will attack the recipient, known as graft-versus-host disease.

"It's awesome to know that you have the potential to save someone's life."

Doctors try to match six key proteins on the surface of the cells. "Those are the major proteins. They're not the only ones," explains Dr. Peter J. Quesenberry, the national vice chairman of the Leukemia & Lymphoma Society, who recently became director of research at Roger Williams Medical Center. "Even if you have a complete match, you still have problems of potential rejection or graft-versus-host disease. That's because there are many, many minor antigens." An antigen is anything that prompts an immune response.

Only those who receive a donation from an identical twin, or who collect their own marrow before it is destroyed by treatment, can get a perfect match. In many cases, particularly with diseases of the blood, the recipient's bone marrow is too diseased to be used for that person, and donors are sought.

On any given day, there are 3,000 searches under way for patient-donor matches. But matches between strangers are hard to find. Although there are 26,422 donors registered in the Rhode Island area, only 65 Rhode Islanders (20 of them in 2000) have donated marrow since the program began 1986.

***

THERE ARE TWO methods for marrow donation: drawing the marrow, a liquid that resembles blood, from the hip bone through a long needle, or extracting the stem cells from circulating blood. The treatment site decides which method will work best.

In Aaronson's case, it was decided her hip bone would not yield enough marrow cells because she is very petite 5 feet 1 inch and 105 pounds while her recipient is apparently a big guy. So she was asked to undergo the blood procedure. Because she was so small, it would take two sessions of four to five hours each to extract enough cells.

But first, Aaronson, 46, underwent a complete physical at Roger Williams Medical Center, and then received shots of a drug that prompts the marrow to pump out extra white blood cells. This produces a feeling of achiness similar to what people experience during the flu (the bone marrow is doing the same thing producing extra white blood cells to fight the infection).

Aaronson said she felt fine until the fourth day of her treatment, when she felt aches in her ribs, thigh and side. But she took Tylenol and put in a full day of work. "It's minimal discomfort compared to what the recipient goes through," she says.

The next morning, she showed up at the Rhode Island Blood Center to have the lines inserted in her arms. Unable to move her arms or leave the recliner for five hours, Aaronson occupied herself watching a rented video. She went home to rest afterward, and resumed donating early the next morning, so the cells could be rushed to the recipient as soon as possible.

Aaronson went back to work the next day, and says she functioned at about 90 percent her usual capacity. By two days after the donation, she was "at 100 percent" and even took her usual three-mile walk before work.

As far as Aaronson knows, her stem cells were shipped to wherever her recipient lies, and put immediately into his intravenous line. "Now they're part of him," she says.

Aaronson has bought a card wishing him well, which will be forwarded to him through the donor program. If he chooses to respond, the program will deliver his letter, after making sure that it contains no identifying details. They can communicate like that for a year. Then, if both parties wish it, they meet.

"Nothing would give me greater pleasure," Aaronson says.

Source: The Providence Journal-Bulletin




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