Life-saving contribution

Thursday, May 17, 2001 • Vol 7, Issue 10

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Marrow donors 'get past needle' to value their role

By BRAD BROBERG

Click here to read a personal account of Andrew Taylor's experience.

photo by Theresa Naujack

In the interest of diversifying the area's marrow registry, staff scientist Andrew Taylor answers questions from research technician Jennifer Young about bone-marrow donation and shows her "Me and My Marrow," an article he wrote 12 years ago for the Center's internal newsletter about his experiences as a marrow donor. Both work in the Smith lab.

When doctors take bone marrow from donors, it comes from the back of the pelvis. But when donors give marrow, it comes from the heart.

A simple medical procedure, marrow donation produces a powerful emotions in those who give a piece of themselves so that someone else may live.

"Most people who do this think it's about the most important thing they've ever done in their lives," said Kim Allen, supervisor of the Bone Marrow Donor Program at the Puget Sound Blood Center. "For most people, it's life-changing."

When possible, doctors prefer to collect marrow from donors who are related to patients, which raises the odds of success. But only one in four patients has a relative with matching marrow.

Four million registrants

That's why people like Nancy Miller and the Hutch's Dr. Andrew Taylor are crucial. As two of the 4 million people who have registered with the National Marrow Donor Program, they provide a lifeline for patients without matching relatives. The federally sponsored registry has supplied marrow for more than 11,000 transplants around the world.

Miller, a 35-year-old Tacoma resident, recently celebrated the first anniversary of her donation.

"I almost think it's weird how hyped up I am over doing it," she said. "Even when I think about it now, it just brings a smile to my face, that I could help someone else live by doing something so simple."

Back in 1989, Taylor became the first Hutch employee - and 153rd person nationally - to donate marrow through the registry.

"If I would have been donor number 100, I would have met Barbara Bush," said Taylor, a staff scientist in the Smith lab in the Basic Sciences Division.

Taylor, 52, said everyone should consider registering to give marrow.

"It's a good chance to support the Hutch's mission in a positive manner," said Taylor, who shortly after donating described his experience for the Center's internal newsletter a dozen years ago in a story entitled "Me and My Marrow."

Although it's a simple, 60-minute procedure, marrow donation (also referred to as aspiration) is considered surgery, mainly due to the anesthesia necessary to dull the pain from large needles penetrating the pelvic bone multiple times. All unrelated donor aspirations are performed in a designated regional hospital.

Home the same day

Back when Taylor donated, patients stayed in the hospital overnight. These days, most go home the same day as the procedure, although they remain sore for at least several days. Miller, a surgical-tech student who then worked as a deli cashier, said she went back to work five days after the procedure. "The first four were the most painful," she said.

Even so, the pain was nothing compared to the bruises left by the five aspiration punctures, each about as big around as a coffee stirrer. Bruises or not, Miller said she's ready to give again. "It's one of the best things I've done in my whole life."

To join the registry - the first step toward eventually donating marrow - donors give a vial of blood to a local donor center, which in Western Washington is the Puget Sound Blood Center.

The blood is tissue-typed based on six markers that help determine whether a given donor and patient are a potential match. That information is entered into the program's nationwide data base

For donors, the next step is to wait. And wait. And maybe wait some more because odds are long that a given donor will have the same six markers as a given patient. Not every donor understands that part of the process. Some think it's simply a matterof waiting their turn, Allen said. "They'll call up and say, 'I've been on the list for five years. Am I almost at the top?'"

Taylor, who waited nearly two years, said he had "sort of forgotten about" signing up when the call came that he'd been identified as a potential donor. The patient was a 2-year-old girl in the Midwest with severe combined immune deficiency.

Miller, whose recipient was a 10-year-old girl, had the opposite experience. She signed up in September 1999, was called in February 2000 and donated marrow that April.

In most cases, the registry identifies and contacts more than one potential donor per patient based on the six tissue-type markers. But those markers are just the first indicators of a possible match. From there, potential donors must give more blood so more complex tests can be conducted to determine the best match.

A thorough physical

Once that happens, donors undergo a thorough physical exam and review of their health history, are prepped about the details of the procedure and asked to sign a conformed consent document.

At this juncture, it's crucial that donors understand the commitment they are making and not back out at the last second, Allen said. Once a patient's marrow is destroyed to make way for a transplant, the patient must receive the donor's marrow as soon as possible to survive.

Miller recalls thinking, " 'What happens if something happens to me?' You pretty much have someone else's life in your hands." The night before her operation, Miller stayed at a Seattle hotel to ensure she would have no trouble arriving at the hospital in time for her 7 a.m. surgery.

To kill pain, patients can receive an epidural, which numbs their lower body, or a general anesthetic, which puts them completely under.

"I just couldn't get past the needle, so I had general anesthesia," Miller said. "I was out for the whole thing. I remember walking up at 12:30 p.m/ they gave me some morphine, I was in my room at 1 p.m., and I went home at 5 p.m."

Once the main weapon for fighting blood disorders, bone-marrow transplants have been joined by a new and growing therapy - peripheral blood stem-cell transplants. Donating peripheral blood stem cells requires the same tissue match as donating marrow. However, unlike marrow donors, stem-cell donors do not need anesthesia, the most significant risk of donating marrow.

Collecting stem cells requires donors to undergo apheresis. a process in which a donor's blood passes through a machine that collects stem cells before returning the blood to the donor. Although no more painful than giving blood, apheresis requires donors to take a special medication.

Donors must take Filgrastim for five days prior to donating to boost the number of stem cells in their bloodstream. During that time, they may feel bone ache, muscle pain and other flu-like symptoms, Allen said.

For patients, each therapy - marrow transplant and stem-cell transplant - offers different pros and cons, Allen said. Stem cells engraft faster but produce a higher rate of graft-vs.-host disease. With bone marrow, it's just the opposite.

Strong attachment

In both therapies, donors form a strong attachment with patients. Even when the recipients are unrelated strangers, donors feel a sense of responsibility and kinship.

"There's the emotional part of saving someone's life, but donors also have this sense they're physiologically the same as the recipient, which reinforces the emotional attachment," Allen said.

If a donor wishes, his or her local donor center will keep him or her informed about how his or her recipient is faring. If both agree, the center will put the two in touch after a year post-transplant.

Taylor said his recipient preferred no contact, but he checks on her condition every year or two. "It's gratifying to know she's doing well," he said.

Miller said she hopes to meet her recipient now that a year has passed, "to put a face to things."

Of course, not every transplant patient survives. Taylor and Miller have spoken with donors whose recipients died. They say the news rattles donors.

"I couldn't bring myself to think about that possibility ahead of time," said Miller. "I think I'd take it really hard, but I don't think it would stop me from donating again. I'd do it in a second."

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Me and my Marrow

By Andrew Taylor
(written in 1989)

On June 16th it was my pleasure and privilege to become the first Hutchinson employee to donate bone marrow as part of the Unrelated Bone Marrow Donor Program. I'd like to tell you how easy and painless it was, in the hopes of persuading you to join the program.

I don't recall how I first heard of the program, but I suspect it was while giving blood. You did know that the Blood Bank is at Terry and Madison, don't you? It's a brief 3 minute walk from the main Hutch building, and I'm sure they're short of blood right now. But I digress. Fill in one of the Bone Marrow Donor postcards, give a small extra sample next time you give blood and you're part of the program.

And that's what I did, and sat back and forget all about it, confident that there are so many different combinations of HLA antigens (the factors, analogous to blood groups, which determine whether your marrow is compatible with someone else's) that I would never match anyone.

Well, just before last Christmas I was proved wrong. Robin Fowler, from the Blood Bank, called me to tell me that I was a possible donor for somebody who needed bone marrow. She explained that the Program had identified about 6 possible donor, and wanted a further blood sample from me: the best donor is identified by mixing the donors and the recipients cells to see how they get along. After checking with me that I vas still interested In being a donor, she removed several small tubes of blood from my arm, and sent them off to some mysterious place where the potential recipient was being treated. She explained that the process is carried out in complete confidence, neither donor nor recipient knowing the others identity (though they discover each other, after the transplant, if mutually agreeable).

After a seeming age she contacted me, at the end of January, to tell me that I was the best donor, and again gave me the chance to withdraw from the process. After slight hesitation I decided to proceed. We scheduled an informational meeting with Dr. Beatty, head of the Program. Another tough commute: I had to walk up one flight of stairs from my lab to his office! He explained the (very slight) risks to me in having marrow aspirated, and demonstrated, with a plastic pelvis, where the marrow comes from. Another chance to say no! I still decided to proceed, and probably signed some consent forms. I'm a little hazy about that, but the general theme of the program seems to be that you give blood samples and sign consent forms at every possible occasion.

At the meeting Dr. Beatty revealed what little I know about the recipient: she's a 2 year old girl in the Midwest who suffers from Severe Combined Immune Deficiency (the same disease that "The boy in the bubble" had).

To determine that I was fit enough for the procedure, I was sent to the Mason Clinic (more tough travel: 300 yards this time) for a physical exam, complete with chest X-ray and EKG. I was examined by a doctor there who, as yet another safeguard in the procedure, has no connection with the Bone Marrow Donor Program, and hence could rule unbiasedly on my suitability to donate.

There was then another long pause, while the recipient waited for a hospital bed to become available. I then had another brief physical exam, probably gave some more blood samples, and was declared to be still fit and well. The Doctor also revealed that my previous blood tests had revealed that I have a low cholesterol level, a "defect" that I've been trying to remedy ever since.

We then finally, after months of waiting, got to choose a date for the marrow aspiration. I'd managed to put it out of my mind, but suspect that the time must have weighed more heavily on the parents of the recipient. On June 1st I donated a unit of my blood, to be given back to me after the procedure ("This Blood's for You"). The day before the surgery I met the Doctor who was going to perform the aspiration, and (it being a Hospital) filled out several pounds of forms.

Then came the greatest shock: I had to show up at the Mason Hospital at 7AM!! But I managed it, thanks to the #12 bus, and was even awake enough to go to my lab to get fresh batteries for my Walkman (of which more anon). Got to the Hospital: more forms of course. As for most surgery I had been forbidden to eat or drink after midnight, and was slightly annoyed to discover the hospital Espresso Bar strategically located right next to the check-in desk. But I resisted, and was soon in the admitting room, garbed in a hospital gown and (surprise) having more blood samples taken. They even cross-match you for the unit of your own blood that you're going to receive, a good example of the extreme care that goes into the procedure to ensure that no possible harm can come to the donor.

I sat there, happily listening to my Walkman, when the anesthesiologist came and took me to the prep room. He kindly let me keep both my glasses and my Walkman with me, and so the aspiration was accompanied by a Brandenberg Concerto (sorry, I forgot which one). I had been offered the option of general anesthesia, but had opted to stay awake: he gave me an "epidural" anesthetic, which numbed be from my middle to just above my toes. I then lay on my stomach in the operating room and happily listened to KING-FM for (I believe) a very brief seeming hour. I felt occasional pushings on my lower half, but no other sensations. Pretty soon it was all over, and I was lifted onto a bed to be wheeled away. I asked to see my marrow, and vas shown two bags of what looked like rather substantial blood. And hence off to the recovery room and food!

There I had the pleasure of being waited on hand and foot by several nurses, as I continued to enjoy the radio and the book I'd brought with me. As the parent of two small children I must say that it was a real pleasure to just lie around and do nothing. The spinal anesthetic wore off pretty quickly, and I vas hooked up, via an IV line, to a "Patient Controlled Anesthesia" machine, a modern marvel which lets you administer Morphine to yourself whenever you feel that you need it. It turned out, however, that the aspiration site didn't really hurt much at all. Then my unit of my blood vas returned to me: it takes 15 minutes to give it but about 2 hours to get it back.

From there I was wheeled, still in bed, up to the ward where I spent the night. Waiting for me there was a very large plant, a thoughtful gift from the recipients family, and a Bone Marrow Program T-shirt. Those who know me might suspect I did it for the T-shirt alone. Friends and family visited me, all bearing chocolate, then left me there to rest. I found, as I mentioned, that I didn't need any pain medication, and soon gingerly eased myself out of bed. I found that my lower back was very stiff (no surprise) but that I could walk around, wheeling my IV along, and so I took several strolls around the ward during the evening and subsequent morning.

The doctor visited me in the morning, changed my dressings and sent me home. Surgery was on Friday morning. I spent a quiet Saturday resting, but managed to get around fine: slight difficulty reaching my feet or getting up but otherwise fine. And the stiffness in my back has been getting less every day. I spent a semi-active Sunday and returned to work on Monday. I was definitely more tired than normal for a few days and still have a slightly stiff back. It's 10 days since the surgery and I now feel -95% back to normal. The only physical reminders of the surgery are 4 tiny little scars, the size of large pinpricks, in the small of my back.

In summary, the surgery was totally untraumatic, my recovery and return to work were rapid, and all the hospital staff treated me as if I were Royalty. I feel very happy that I decided to donate, and would recommend it to anybody who feels comfortable donating blood.

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