On Donating Stem Cells

It was my first week at a new job and my phone was ringing with an unfamiliar number. I picked it up.

"Hi Pearl, this is Shannon from Gift of Life. You've been identified as a match for a bone marrow donation."

What? I tried to place where I'd heard that configuration of words before. Finally, my mind pinpointed a thirty second episode that had taken place years earlier. One day in college, I had walked past a table emblazoned with a Gift of Life banner. I'd never heard of the organization, but Libby, a friend behind the table, noticed me and urged me to "Get a cheek swab! Something something bone marrow!" It sounded vaguely like a good idea and I donated blood all the time, so I quickly swabbed my cheek with the Q-tip they provided, jotted down my contact information on the package, and hurried off to my next class. Within minutes I had forgotten all about it.

I hadn't put much thought into it, but now they were calling. Huh. What did this entail?

A lot of procedure, it turned out. Gift of Life concentrates their resources in the areas where they do the most work, but I didn't live near any of those areas. This meant that I had to drive 40 minutes to the lab that was registered with their system for each procedure, and there were a lot of procedures. A blood test to confirm the blood was a match. A physical examination. A vein check. A signature that I wasn't pregnant. A certified blood test showing that I wasn't pregnant. Another certified blood test showing that I wasn't pregnant. (I don't know what was up with that. I spent a lot of time proving and re-proving that I wasn't pregnant.)

Another concern I had was that the efforts put forth would ultimately be for nothing. This was not the first time that I had received a request from Gift of Life: they had called months earlier asking me to donate white blood cells, a minor procedure. I had undergone a physical examination and blood test, only to receive a call the day before the scheduled donation informing me that the procedure had been canceled. It was a frustrating experience that left me feeling uncertain about the reliability of the process.

When I voiced my concern to my Gift of Life coordinator, to my surprise, she told me that could likely happen again. "We don't control the patients," she told me. "Anything can and does happen at the last minute. Something new can come up; an x-ray can show results that are different than expected; the patient can die overnight. So that might just happen again." In fact, she said, I should be prepared for any eventuality. Some donors' bodies don't respond to the steroids at all, and have to do an emergency bone marrow surgery. Some donors need an extra donation day. While the uncertainty was unsettling, I appreciated her honesty.

Finally, after two weeks, I was approved to donate. So, I fired up my laptop and did some research to figure out what this was about.

Stem cells are the "generic" raw cells in your body that develop into other kinds of specialized cells, including organs, muscles, and bones. Stem cell donations concern a specific kind of stem cells called haematopoietic (hee-MA-toh-poy-EH-tik) stem cells, or blood stem cells, which are the "template" cells that become blood: white blood cells, red blood cells, and platelets. Haematopoietic stem cells are found in the bone marrow, in the center of bones. They are responsible for generating the entire blood stream.

When someone has a blood disease, usually blood cancer (leukemia), lymphoma, other cancers, or sickle cell anemia, the disease affects the blood itself. A last-ditch treatment is to replace the patient's entire blood-generating system with that of a healthy blood-generating system, allowing the blood to regenerate itself without the presence of the cancer or disease. This is done via stem cell transplants.

Stem cells are produced by bone marrow, which is traditionally how bone marrow transplants worked: it was a surgical procedure that involved anesthesia where they drilled into the bones and extracted bone marrow. The stem cells were then removed from the bone marrow.

Bone marrow transplants are still used for children and special cases. However, most of the time, the process today is high-tech and much lighter on both donors and recipients via a technique called Peripheral Blood Stem Cell (PBSC) donation. The way it works is that for five days the donor is given injections of a steroid (filgrastim for me but neupogen is used too) that makes their bones go into overdrive, producing huge amounts of stem cells. The bones are so overwhelmed with the volume of stem cells that they are producing that they start pushing all the excess stem cells into the bloodstream. (The side effect of this is that the donor feels sick.) On day five, they hook the donor up to an apheresis machine and, in a process similar to dialysis, cycle through all their blood and remove the stem cells. A needle is placed in one arm, which removes blood from the body and feeds it into an apheresis machine. The machine spins the blood and removes the stem cells. The blood is then returned to the body, minus the stem cells, via a needle in the other arm.

During the intake process, I was asked over and over again whether I was allergic to anything. Finally the coordinator explained that anything I was allergic to, my recipient would be allergic to as well after the donation. Because allergies concern the immune system, which is a function of antibodies, which are in the blood, all my allergies would transfer with the stem cells.

The whole process was extraordinary to me. They can transplant immune systems? I was reminded of James Somers' "I should have loved biology," where he highlights our lack of appreciation of the mind-blowing complexity that the human body encompasses. "In the textbooks, astonishing facts were presented without astonishment. Someone probably told me that every cell in my body has the same DNA. But no one shook me by the shoulders, saying how crazy that was," he writes. The concept of transferring an immune system to another person was hard to wrap my mind around.

The Gift of Life coordinators also kept confirming that I wasn't thinking of backing out of the procedure. "You have the legal right to withdraw at any time," they told me, "but don't do that." Immediately before receiving the healthy donor cells, the recipient receives an intense chemo treatment that destroys their diseased stem cells. If I backed out of donating at the last minute, when the recipient had already received the killer treatment, the recipient would likely die. I didn't live close to any of the donation centers, and that was why I had to be at the donation facility by day three: flight delays couldn't delay the process.

I had recently begun a new job, but fortunately, my manager made it clear that he was fine with accommodating the donation process.

A nurse came to my apartment the first two days to administer the filgrastim injections, and later on day two I flew out to the Gift of Life facility in Boca Raton, Florida. Gift of Life handled all of the logistics; I only had to show up in the right place at the right time. They put me up in a luxurious five-star hotel, although I didn't completely process it; by day four I was strongly feeling the effects of the filgrastim and feeling sick and achy. It wasn't too awful, but it made it difficult to work.

Gift of Life's Boca Raton center is a beautiful spa-like facility designed specifically for stem cell donations. The nurses are specialists, the rooms are private, and the staff caters to your every need. I have dietary restrictions, and the staff went above and beyond to provide meals that I could eat. There is also a lab attached to the facility so that results come back immediately. The nurses were supportive and encouraging, frequently expressing their appreciation for my efforts and checking in that I had everything I needed.

The view from the front lobby.

During my transportation to the donation center, the driver shared stories about his experiences as a driver for Gift of Life for years. He said that he'd recently driven around two parents and a pair of teenage twin boys, one of whom had donated stem cells the year before and who'd come to Boca to meet his stem cell recipient, who had fully recovered. The family had a great time in Boca. A few days later he drove another man who'd come to meet his donor. The driver realized it was the recipient of the twin and told the man that he'd met them too, whereupon the man broke down and started crying right there in the car. He was still so speechless by what a complete stranger had done for him. Hearing that story made me realize how worthwhile the small discomforts of donating were.

Apheresis is an interesting process. The apheresis machine is loud, and it shakes, making the whole room vibrate. There are a lot of needles involved, and I learned something new about myself: my veins are autonomous - they move on their own without being prompted. The nurses were amazed at what my veins were doing, which was a good mask for their probably being super annoyed. Every hour or so the machines would go off and I would have to be re-stuck, which was a long process.

You can't move one arm the entire process! Every time I moved it slightly, alarms would go off and machines would start beeping. Finally, I asked the nurses to tape my arm to the chair. They obliged, and that fixed it.

The aftereffects of having autonomous veins!
(picture taken a few days after the donation)

The process was exhausting. It was unsettling to feel my blood rushing, rushing, rushing throughout my body. I tried watching a documentary but I couldn't focus on anything. I spent most of the day on my phone, or just closing my eyes.

Around noon, they did a blood sample to see how things were going. The results were not great: my body hadn't responded enthusiastically enough to the filgrastim and I didn't have as many stem cells as were needed. I was going to need to stay a second day. That wasn't the end of the world, but it meant a lot of overhead: a domino chain of plans had to be changed - I wasn't planning to go directly back home, but to a work meetup in a different state first.

At the end of day 1: Me with my stem cells!

I did eight hours of apheresis that first day. I staggered home and fell asleep immediately. On Friday, day two, they did about four to five hours of apheresis. I couldn't see straight when I got back to the hotel; I tried to shower but after a few minutes the edges of my vision began to go black. Thankfully, I didn't faint.

Stem cells have a very short shelf life, and immediately after each day's donation is complete, a special courier is dispatched with the stem cells directly to the hospital of the recipient.

There was some fine print about resting after the procedure, which I mostly ignored. I'm no wimp; I can handle being tired.

That was a poor decision. It turned out that when they talked about a "median week recovery period," they meant it.

I had scheduled the donation for the Thursday (and then Friday) before my first in-person work meetup, which was the following week from Monday through Thursday. In my defense, they had wanted the stem cells as soon as possible, and that was when "as soon as possible" was. But I couldn't function at the meetup because I was so exhausted.

"No problem," I thought, "I'll mask it with coffee!" That was, it turned out, an even less intelligent decision. I struggled to maintain my energy levels even with the coffee, and by Wednesday I had collapsed and couldn't get out of bed. I ended up sleeping through most of Wednesday and Thursday. But I felt a dip in my energy levels for weeks afterwards, and I believe my recovery period was prolonged because of those bad decisions.

I learned an important lesson about properly managing my physical well-being. It's tempting to ignore what my body needs in favor of what my mind wants, but pushing myself beyond my physical limits and not leaving time to recover after a procedure only causes more issues down the line.

Donating stem cells was a moving experience. A teacher I had in high school used to say that everyone has an abundance of something in life, be it money, connections, friends, confidence, or something else, and that everyone should use their abundance to help others. Donating stem cells felt like a way to express gratitude for my own health by giving it to another person. It was a humbling and rewarding experience that I will always remember.

The donation process also left me with a newfound appreciation for the capabilities of modern technology. Biotechnology is often overlooked as a field, but the fact that it is now possible to replace one person's blood-generating system with another through non-invasive means is truly remarkable. It is a testament to the advances made in this field and the potential it holds for improving and saving lives, and an incredible example of the way that technology can effect positive change in the world.

I strongly encourage readers to consider joining a bone marrow registry. (Underrepresented minority groups are particularly in need of donors.) Gift of Life will send you a free donation kit and many other registries have similar programs available. If you are unable to donate for any reason, you can still make a difference by encouraging your friends and family to join the registry. If you're healthy, it's nothing - a cheek swab takes a few seconds and donating is a day or two. But for someone who needs it, it's the difference between life and death. Because some students took the time to set up a swab table at a college campus, the man who matched with me will hopefully get a new lease on life. By registering as a donor and following through with the donation process, you have the opportunity to make a lasting and meaningful impact on another person's life.

It's a small way to make a big difference.

Gift of Life is an extensively-reaching, well-oiled machine and I was impressed by the way that everyone who worked there seemed so genuinely dedicated to its mission. My curiosity about the organization prompted me to learned more about its history.

In 1991, a 22-year-old Federal Reserve analyst, Jay Feinberg, was diagnosed with leukemia. His family and friends rallied behind him, organizing a sweeping awareness campaign that was covered by the New York Times and across national TV; they ran drive after drive to find a bone marrow match for him and inspired others to do the same in their hometowns. 85,000 people were swabbed at over 225 drives, and matches were found for others who needed them. But no matter how hard they looked, no match was found for Jay.

Four years passed and Jay was rapidly deteriorating. In desperation, they ran one last hail mary drive in Milwaukee. That final drive turned up the match: Becky Faibisoff, a 16-year-old girl in Illinois. The transplant was successful and Jay recovered fully. He dedicated his life to helping people find bone marrow and stem cell donors and founded Gift of Life, where he is currently the CEO.

I suspect this is why Gift of Life is such an effective organization. Unlike nonprofits run by MBAs interested in high salaries or career progression, Jay Feinberg is dedicated on a personal level to enabling people to find and receive bone marrow donations. I could tell how much thought had been put into making the donation experience as easy and enjoyable as possible. Gift of Life runs the world's only facility dedicated only to stem cell donations - most other organizations have you donate in a hospital. Or, other organizations have donors get their filgrastim injections each day at a hospital, while Gift of Life arranged to have nurses come to me. Gift of Life is also on the cutting edge of stem cell donation technology; for example, they were the first registry in the world to extract DNA matches from just a cheek swab.

I am sure that other organizations are excellent as well, but I highly recommend Gift of Life as a reliable and supportive organization for stem cell donation. Based on my personal experience, they were exceptional to work with and I would not hesitate to donate with them again in the future.

Thank you to Margaret Butler and B. Kaplinsky for reading drafts of this post.

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