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Home arrow Today's Stories arrow ‘Not brave, just willing’
Today's Stories PDF Print E-mail
‘Not brave, just willing’
Posted: 11/14/07 08:52 PM [ET]

Megan Medley, senior legislative assistant to Rep. Robert Aderholt (R-Ala.), had reservations about joining the national bone marrow donor registry, a database used to match patients in need of bone marrow transplants with donors.

Medley’s sister, a hospice nurse, and her dad, a Vietnam veteran, both registered, which required offering a vial of blood or a swab of cells from the inner cheek. There is no commitment to ultimately donate bone marrow, and only one in 200 on the registry get asked.

But Medley hesitated, unsure how she would respond if she matched with a patient and was asked to undergo the taxing process of donating bone marrow.

“I didn’t want to say yes to getting on the registry if I wasn’t going to say yes if I ever matched,” Medley said. “I was not willing to make the commitment. It just sounded too scary.”

That was before. Then, five years ago, a registry drive on Capitol Hill brought the question to Medley’s mind again. At least one experience in the interim affected her thinking: her dad’s brief bout with colon cancer.

“It just makes you think differently when you’ve had a family member affected,” she said. “It just makes you more mindful.”

Medley’s work on the Hill also influenced her perspective. She has lived in D.C. for 24 years. She worked as a lobbyist for almost seven years before joining Aderholt’s staff seven years ago. As senior legislative assistant, her issue areas include foreign affairs, the judiciary, appropriations, education and healthcare.

“Working on Capitol Hill … you know how many people are out there who are really in need,” she said.

So five years ago, when the C.W. Bill Young Department of Defense Marrow Donor Program sponsored a registry drive on the Hill, Medley showed up, registered and forgot about it. For most, that is the end of their service.

‘An amazing process’

But last January, Medley was contacted and told she was a potential match. She went for secondary testing, which meant giving several vials of blood to confirm the match. In early April, the match was confirmed, but she was informed that the patient was not ready for a transplant and that the donation “probably won’t ever happen.”

Most bone marrow transplants are used to treat various forms of leukemia, though they also treat lymphomas and inherited immune deficiencies, said Dennis Confer, chief medical officer for the National Marrow Donor Program.

He said leukemia patients must undergo intensive chemotherapy treatments for weeks or even months in preparation for a bone marrow transplant. Infections can develop, he said, requiring treatment with antibiotics and further delaying the transplant.

A number of factors could have delayed Medley’s recipient. Transplants must be arranged to fit into a small window of opportunity when everything is just right, making them logistically difficult to schedule.

Medley was surprised again.

“The Friday of Memorial Day weekend I was called … [and told] the patient’s ready,” she said, “and that really kicked off what turned out to be just an amazing process.”

After a full physical determined she could handle the surgery, she was ready to go. Almost.

Medley communicated with the registry in the weeks leading up to the operation. They answered her many questions and helped put her at ease. Though life-threatening for the recipient, the surgery carries minimal risk to the donor.

Doctors would make two incisions (so small that stitches aren’t necessary) in her back, through which they would access the hipbone with a needle hundreds of times. Unlike blood, bone marrow is thick and spongy and cannot be easily fed through a needle, so it must be reinserted hundreds of times to collect the required liter of marrow.

“My sister describes it as trying to get Jell-O into a straw,” Medley said.

She experienced pain, weakness and bruising, but was told that all were temporary, and that she should be back to normal in a matter of weeks.

She also had “an amazing family support system in place, and they really were the ones who helped me get through the whole summer,” she said. “My sister … was kind of my medical support team, and my dad has always been a great support to me, and my mom was really the one who took care of me after the surgery. So all three played really vital roles.”

‘Very personal’

Her biggest source of help involved information about the mostly anonymous recipient. All Medley knew for certain was that the patient was a woman about her sister’s age who had a type of chronic leukemia that was no longer responding to drug treatments, but could potentially be cured by a transplant.

“I was nervous, but when I found out some of the details, it made it very personal,” Medley said. “Her only option was to get a bone marrow transplant.”

Confer said there is a roughly 50 percent survival rate for transplant recipients. He said that rate is improving, but varies considerably for different diseases and their severity. If a leukemia patient’s bloodstream shows no signs of disease, the patient is considered cured. But Confer, the physician, said there is always a chance the leukemia could return, though the likelihood falls as time passes.

“The goal of every transplant is to eradicate leukemia and have it never come back,” he said.

Medley’s surgery was scheduled for July 25. As her colleagues on the Hill absorbed her duties during the height of appropriations season, Medley underwent surgery at Georgetown University Hospital. Nurses had her up and walking within two hours of the surgery’s completion.

“I looked and felt like I had been hit across my lower back with a baseball bat,” she said. “People kept saying, ‘I can’t believe how brave you are.’ And I said, ‘Not brave, just willing.’ I was not feeling brave right after that surgery.”

With family and friends rallying around her, Medley recovered quickly. She went into surgery on Wednesday, stayed overnight at the hospital and was back to work on the Hill the following Tuesday. During her first week back, she visited the nurse in the Longworth House Office Building for ice packs and mandatory naptime for an hour each day.

Her bruising lasted two weeks, and her energy was back in four weeks.

“[Donating bone marrow is] not something you get to do every day on the Hill,” Medley said. “We can argue policy until the cows come home, but when you actually have the chance to put your feet on the ground and help somebody like this, you do what you have to do.”

To protect anonymity during the transplant process, contact between donor and recipient is restricted to three status updates, at 30 days, six months and one year following the transplant, at which point the two are free to contact each other if they both agree.

Medley was eager to hear that first update but cautious not to get her hopes too high. Though she occasionally wondered whether the treatment would succeed, she never questioned donating.

“I never had doubts about me doing it,” she said. “Whatever the outcome was, you want to be able to give that other person hope.”

When the news finally came in early September, it brought “tears,” she said. “Lots of tears. Good tears.”

The recipient was doing well, and was home from the hospital in time to help her children prepare to start the school year.

 
 
 
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