I'm A Match! The Journey As a Bone Marrow Donor Begins

Last fall I received a phone call. On the other end of the line was a woman calling from the National Marrow Donor Program. She asked if I remembered back in 2001 when, as an undergraduate at Texas Tech University in Lubbock, Texas, I joined the National Marrow Donor Program registry.

Yes, I did remember. I had noticed an ad in the campus newspaper talking about efforts to add volunteer bone marrow donors to the national database. This particular donor drive was to find a match for an alumnus, Marilyn Young Stewart, who was suffering from lymphocytic leukemia.

At the time I was a regular blood donor and thought registering as a volunteer bone marrow donor would also be a good thing to do. I gave a sample of blood, filled out a short questionnaire and was on my way. Over the years I had moved frequently, zigzagging across the country as I changed jobs and went to graduate school, but I was always careful to update my contact information in the database- just in case someone needed me.

Someone did. I had been identified as a possible match for a woman with lymphoma. Was I willing to go through further testing to determine if I was the best match for them? I didn’t hesitate. Of course I was willing.

Within two hours of receiving the phone call I had filled out a short health questionnaire and been scheduled at a local lab to have blood drawn. Forty-eight hours later, the blood was drawn. I was told I would be notified of the results in 2 – 6 weeks. As the vials of blood winged their way to the lab for extensive testing, I settled in for a wait.

And I waited.

Work kept me busy writing reports and sending me to conferences.

And I waited.

I celebrated Thanksgiving on the West Coast with family and friends from college I had not seen in years.

And I waited.

The 6-week mark came and went. I contacted the registry. Any updates? No, nothing. But I should definitely hear by the 8-week mark. So again, I waited.

And 8 weeks later, just before Christmas, I received a letter. I was a suitable match! However the patient was not currently ready for a bone marrow transplant. I may be notified at some point in the future if the patient became ready to receive a transplant. In addition, since I had been through further testing there was an increased likelihood I would match with another patient in the future.

I was excited to know I was a suitable match for the patient. My biggest worry to that point was if the patient would find a match. And if she did find a match, would her match go through with the donation?

It was incredibly surreal to be so worried about a complete stranger. All I knew was their age, she was female, and she had lymphoma.

Yes, this person was a stranger to me. But this woman was someone’s daughter. She could also be a wife, mother, sister or aunt. She could even be a very young grandmother.

She was a someone to someone else. And she was loved.

If any of the people in my life were in this person’s situation, I would hope that a match would be found, and more importantly, the match would be a willing donor.

That letter could have meant so many things. Maybe the patient had gone into remission and was no longer in need of a transplant. Maybe the doctors had a few treatment options to explore before fully deciding on the transplant. Maybe several matches had been found and I was the second or third best match. Or, sadly, maybe the patient had passed away.

I sincerely wished the best for the patient and I hoped they felt comforted, knowing at least one match existed somewhere out there. I thought it was a rather wonderful Christmas present.

A month later, I got the call.

My patient had been moved to transplant status. I had been identified as the best match for them and they were hoping I would donate via Peripheral Blood Stem Cells (PBSC). Would I donate?

Yes. Of course. When?

The patient’s transplant center had a target date in mind for the transplant. That date was just weeks away, the second tightest turn around my case representative had seen. It was tight, but doable, provided the apheresis center could schedule my physical exam and PBSC collection procedure. Additional blood tests were needed (as they are at every step of the process), and while the blood is usually drawn at the physical, the tests can take up to a week to process. This was time we didn’t have, so I was sent to my local lab prior to the physical so we could get moving on the tests.

I received an information packet that included extensive information about the donation process and consent forms for the PBSC procedure and the scientific studies you are asked to join. The scientific studies are optional, participation is not required and declining to join will not prevent you from donating stem cells. However, each of these studies will further transplant research, help increase survival rates of transplant recipients, and decrease recovery time for both donor and recipient. Commitment to the trials ranged from a one-time donation of one vial of blood to a yearly phone call.

I wasn't kidding when I said the information packet was extensive.

Next up was a counseling session with my case rep over the phone. We spent an hour and a half on the phone during which we went over what to expect before, during, and after the PBSC procedure and all of the consent forms. I had many questions regarding the procedure, logistics as to how all of this was going to happen, and questions about my recipient and her condition. My case rep stressed how important it was to express any concerns I might have early in the process so they could be addressed. Backing out of a commitment to donate, especially later in the process, would likely have fatal consequences for the patient. I assured my case rep that unless she told me I was going to face long term harm from the procedure there was no way I was backing out of this. She quickly scribbled in her notes that I was “highly unlikely to back out”.

A physical was scheduled at my apheresis center. The center was located in a large hospital about an hour and a half from my hometown, so I took the day off of work to complete the required exam.

I battled a snowstorm to arrive 45 minutes late for the appointment. I had left my house at 7 in the morning and it quickly became apparent I was not going to make my scheduled appointment at 9. Thankfully the apheresis center coordinator called as soon as they opened to check on me and knew I was going to be arriving late. He told me to take as long as I needed to arrive safely, they would hold my appointment for me. That was a huge sense of relief. In that hour before the phone call I had been worrying they would have to reschedule my appointment and was kicking myself for not having left even earlier. I knew that rescheduling the appointment would likely result in a delay in the transplant for the recipient. I did not want that to happen.

At 9:45am, having battled a snowstorm and navigated an entire hospital to find the tiny apheresis center tucked into the middle of it, I tumbled in the door. I sincerely hoped I had no icicles hanging in my hair.

I was given my hospital identification card and order forms for an EKG and chest X-Ray. An extremely kind nurse from the apheresis center led me back through the maze of the hospital and up one of the towers to the EKG suite. En route she showed me the location of Outpatient Radiology where I would stop for my chest X-Ray after the EKG. I was left in the capable hands of a technician for my completely painless EKG; which took less than 3 minutes to complete. Two of those minutes were consumed with attaching all of the wires to various points on my body. Right as I was about to ask if the test was going to start the EKG tech smiled over at me and said, “Done!”. Seriously? That was it? Yup, head down to Radiology.

Outpatient Radiology had a similarly short wait. I walked in, grabbed a number from the ticket dispenser and sat down to read my book. I hadn’t gotten any further than a paragraph when I was called back. I quickly stowed my clothes in a locker and donned a runway worthy hospital gown. The X-Ray Technician led me through two poses for the chest X-Ray, one view from the side and one view from the back. Well done, ditch the gown and get dressed.

Back at the apheresis center more tests awaited. I was given an empty cup and pointed towards the restroom. Always a fun moment, especially when you drop the cup and it ricochets across the tiled room. Thank goodness it was empty. More blood was drawn and the Hematologist on staff gave me a complete physical. She listened to my heart, lungs, checked my thyroid, lymph nodes, and reflexes. We discussed my medications and allergies. All of these questions and tests were to ensure I was healthy enough to go through the PBSC procedure and to protect my recipient.

Three hours after I had arrived at the hospital, I was out the door and headed home. The snowstorm I had driven through was projected to become an ice storm by early evening so I raced home before the roads could ice over. I made it home with an hour to spare.

The next week ticked slowly by. I had completed all of the necessary paperwork, blood draws, and physical exams. In the background, my donor rep and other people at the Be The Match registry were working furiously to get the logistics, paperwork, and final approvals in place.

And word came. Ten days after the phone call telling me I was the match, final approval was in place. The procedure was a go! My donor rep booked a plane flight for my mom who was coming in to support me, and a hotel room for us the night before the PBSC collection.

The next two hours were a bit of a high for me as I started psyching myself up for the process that would lead up to the PBSC collection. My recipient would check into the hospital mid-week to begin her workup. I would begin the Filgrastim injections the following day. This was only 3 days away from happening!

And then, as I was walking out the door at work that evening, another phone call that began with the words, “The best laid plans. . .”. My recipient’s pre-procedure blood tests had come back showing elevated levels. Her transplant team wanted to immediately re-schedule the PBSC procedure for a few weeks later. Was I able to delay? If not, I would go through with the PBSC collection as planned and my stem cells would be cryogenically frozen until my recipient was stable enough to receive the transplant.

I chose to reschedule the PBSC collection. The plane flights and hotel reservations were cancelled. And I went back to waiting.

I hated the wait. Since the moment I had been told I was the best match I felt like I was in a race against cancer. A race to get my stem cells collected and sent to my recipient. I was ready to pull on the boxing gloves and go few rounds with her cancer, but I had to wait.

I watched the calendar as the days ticked by. Some of my blood work such as testing for infectious diseases and pregnancy had to be repeated, as these tests must be negative for 2 weeks prior to the PBSC collection.

The days passed and then we were down to a matter of hours. I crossed my fingers that the phone wouldn’t ring with news of another delay. Then I crossed my toes.

The beginning of the week arrived. My recipient was scheduled to check in to the hospital and begin her work up the next day. I was scheduled to begin my Filgrastim injections on the day following that. So again, we booked the airline flights and reserved the hotel room.

I continued to watch the clock. As we drew closer to the day my recipient would begin treatment I knew the window of opportunity for things to go wrong was shrinking rapidly. If anything major had appeared on her pre-procedure blood tests I would have already been notified. However, I had also been told it was possible for my recipient to check in to the hospital and the transplant be cancelled at the last minute (for instance, if an infection is found). Depending on the physical location of my recipient and a possible difference in time zones between us, there was a tiny chance I could receive a phone call en route to the apheresis center to begin my Filgrastim injections and be told the procedure had been cancelled.

This was literally down to the wire.

My phone was silent.

Mid-week arrived, my recipient would soon be checking into the hospital and beginning her chemotherapy and radiation treatments. These treatments would destroy her immune system to prepare her bone marrow for my stem cells. If she did not receive my stem cells after having her immune system destroyed she would die.

I felt incredibly humbled by the amount of trust and hope being placed in my hands. Thankfully, the wonderful people at the Be The Match Registry and at my apheresis center were supporting me every step of the way. I was being watched over and taken care of.

And then- it was my turn. Time to start my preparations.