Hey y’all. Just a little disclosure: this is an e-mail I received after asking my donor to write her story about the process of being on the other side of a stem cell transplant. I will follow shortly with my side of the story but wanted to share this for those who are curious about stem cell donation. It is a longer read than most of my posts (but probably more worthy of your time) so hunker down and settle in. It’s a great read and nearly had me in tears.
“Do you want to register to become a stem cell donor?”, asked the nurse at the blood bank. I was 18 and feeling altruistic. My quick response was “sure”, without hesitation, without thought.
13 years later, after moving countless times, living overseas, starting my nursing career, getting married and a name change, I get a call. The One Match representative had been searching for me, tracking me down for weeks. I could hear the relief in her voice that she’d finally found me. With little pomp and ceremony, she told me that my blood had been matched with someone in need of a stem cell transplant. A transplant that could be life-saving. “Would you be willing to come in for further testing to see if the match can be a success?”. Again, without hesitation, without thought, “Yes!”. I am a nurse and a christian, professionally sculpted to promote health and personally molded to love as I would like to be loved. My whole orientation was tuned to that “Yes”.
My thoughts only started swirling with questions after we hung up. What did I just commit to? It’s just some blood tests, right? I don’t think I had malaria when I lived in Zambia, but maybe I did. What if they discover I have some strange infectious disease I didn’t know about and then I have to have that awful conversation with my husband? (LOL). Seriously, your thoughts go everywhere when you think you’re about to be medically laid bare. Rising along with the anxiety though, was the excitement I felt about potentially being involved with saving someone’s life. Wow.
Two days later I was sitting in a chair giving blood. This first testing was basic. I had performed it a thousand times as a nurse, only this time I was the patient. No problem, one little needle and a few small tubes. There was a current of composed urgency from the One Match staff. Apparently the recipient needed the transplant soon, and so the process was being expedited. I started to imagine what the recipient was like. Probably a 58 year old biker with a beer belly and stubble. Ya, probably.
Soon after I received another phone call from the same One Match rep, Cheryl. She was excited. My test results continued to be a match with the recipient. I was surprised, as I had been reading about the low probability of actually being the best match for someone. One in twenty three million to be exact. I asked the rep how many other potential donors were still being tested. She said, “Out of the ten possible matches initially, we are now down to four”. Whoa. Crazy. Only four people on the planet that, at this point, could possibly save this person’s life. The rep was eager to answer any questions I had, and tenderly expressed again how meaningful it was to have my participation. She was so thankful for my continued involvement and passionately portrayed what this could mean to the life of the recipient. Now I really wanted to help Gerald, the 58 year-old beer bellied man who probably shaves but just hasn’t had the energy to lately.
Less than a week passed before I returned to the clinic for more blood testing. The second draw was more extensive and included Infectious Disease Marker testing. I was irrationally nervous. The mantra running through my head was, “I’m a healthy person. It’s going to be ok, yeah”. This time I had a One Match nurse drawing the blood. She was enthusiastic, but her shaky hands made me slightly concerned about her poking me with that huge needle. As I questioned her about her role, the process, and One Match, she explained that because matches are so rare, her facility primarily focuses on public education and petitioning people to join the registry. Actually having a potential donor only happens a few times a year in our city, and the person who usually does the blood draws was away, so she was asked to come in on the weekend to see me. Oh great, a rookie! She ended up doing a great job, my only hardship was a small bruise in the crux of my arm. And again she expressed abundant thanks for my willingness to come in. I was beginning to feel silly with all the praise. I was just giving a little blood. Nothing my body couldn’t replace quickly. Not a big deal.
Sooner than I expected, within days, Cheryl called to tell me that I was a perfect match for the recipient. I felt like I had won the lottery. I still get goosebumps when I think of it. How surreal, to actually be the one in 23,000,000! We had a long and happy conversation about what would occur over the next few weeks. My husband and I were then invited to meet with Cheryl personally for a detailed info session.
I thought I knew the basics, but our info session made it all very real to me. While chemotherapy and/or radiation therapy are essential treatments for the majority of cancer patients, high doses can severely weaken – even wipe out – healthy stem cells. Stem cells are versatile cells with the ability to divide and develop into many other kinds of cells such as red blood cells, which deliver oxygen throughout the body; white blood cells, which help ward off infections; and platelets, which allow blood to clot and wounds to heal. Cancer treatment is a catch 22. It kills the good stem cells along with the bad and ugly cancer cells. That’s where stem cell transplantation comes in. My recipient, because now Gerald was my recipient, was currently undergoing life-saving treatments and needed stem cells as soon as possible to survive.
There are two methods for donating stem cells. The first is through circulating blood, called stimulated peripheral blood stem cell donation. To increase the number of stem cells in the blood, donors receive injections of a drug called granulocyte colony stimulating factor every day for four to five days prior to the donation. Blood is then drawn through a needle in the arm, passed through a machine, stem cells are separated from the rest of the blood, and the remaining blood is returned back into the body through another needle. It’s non-surgical and takes about 8 hours. The majority of transplants are performed this way.
The second method is a bone marrow stem cell donation. A surgical procedure performed under anesthesia. Doctors use needles to withdraw liquid marrow (where the body’s blood-forming cells are made) from both sides of the back of the pelvic bone. The liquid marrow is then immediately transported to the recipient to be given intravenously as the shelf-life of bone marrow is only hours long. The decision about the best source of stem cells is complex and made by the doctors. In my case, I was told that I would be undergoing a bone marrow donation as my recipient was less likely to have a severe graft vs host disease (GvHD) reaction.
My husband was much more anxious about the surgery than I was. I guess being in the medical field helps counter the “scary unknown”. He was most concerned about post-surgery recovery, whether this would effect our ability to start a family soon, and long-term effects. There was no stone unturned, every question answered with detail and even more info than I had thought to ask. I felt so well cared for and appreciated. We were reassured to know that bone marrow stem cell donation is safe. The risks associated with it, such as anesthesia risks, infection, and nerve, bone, or tissue damage are vary rare. I would have to wait 6 months before getting pregnant to avoid complications in labour, but after that there were no concerns. In our minds, none of the risks outweighed the benefit of potentially saving someone’s life.
What was particularly impressed upon me in that meeting was the importance of making a commitment to my decision either way. I was free to decline to donate at any point in the process. However, if I chose to go ahead, then my recipient would be given treatments that would make them extremely vulnerable to infection and other complications. The One Match staff were very clear with me, walking away at the last minute would certainly lead to my recipient’s death. I appreciated their professionalism and advocacy for their patients, both for me and my recipient.
What ended up being the most difficult part of the journey was dealing with my employer. I was refused a leave of absence, and denied most of the vacation I had requested following the surgery date. I was angry because I work in the medical field and our whole business is in the promotion of health for people! Come on! Despite my inner outrage at the injustice, I had to use up all my accumulated sick time in order to ensure continued income through my recovery. Realistically a minor hurdle, but frustrating none the less.
6 weeks after Cheryl’s first phone call, and twenty days after ‘winning the lottery’ I was walking into the Cancer Center for my surgery. To sum up the pre-surgery experience, I was treated like royalty. Both the surgeon and the anesthetist had private meetings with me to answer questions and explain what would happen. The nurses were encouraging and kind, continually applauding my courage to participate in this process. Again I felt unworthy of their praise. Everyone was electric with anticipation. I realized after talking with the staff, that they only performed similar surgeries for bone marrow donation about once each year in my city, as matches are so rare. A humbling and sobering reality.
As I was laying on the OR bed and my anesthetist gently put me to sleep, my last image in my head was of Gerald, my 58 year old biker, sitting somewhere waiting for the bone marrow that could save his life, and I smiled. I had no pain during the 1 hour procedure, and woke up to the cheers of the doctors and nurses in the OR. 1.5 liters of my liquid marrow was on it’s way to my recipient’s location for transplant.
My throat felt raw and my voice was hoarse. I felt very nauseated and threw up a few times, but was given meds to help with it and felt better soon after. The only setback was when I tried to get up out of bed too soon after surgery and my epidural which had made me numb from the waist down was still working. I was eager to go home so I tried to prove to the nurses that I could stand on my own. My legs were like jello, and because all my blood vessels were so relaxed they couldn’t push the sudden rush of blood into my legs back up into my head, so I almost blacked out and felt awful for a few minutes. The nurses gently rebuked me and helped me back into bed. Now, my husband and I laugh about it because I should have known better, but I ignored that little voice inside that said, “Whoa Nelly, slow it down a little”.
I was also visited by One Match staff only a few hours after surgery, showered with thanksgiving, and given a glass blown orb with the One Match logo on it in honour of my donation. Cheryl said, “There are no words to express how grateful we are to you”. And I felt the same about getting to be involved. No words.
I went home that same day. Some of the short-term side effects for me included a deep ache in my pelvis (about 4/10 on the pain scale) for a couple weeks, and fatigue lasting about 6 weeks, but incrementally improving over that time. I chose not to take pain killers such as Tylenol #3’s and Percocet because the side effects of those make me feel more ill than the soreness I was experiencing. Others who have donated bone marrow stem cells say that the discomfort is mostly if not totally diminished by these common analgesics. I was back at work a few weeks after the surgery and pregnant 8 months later with my first child.
For the weeks and months following the surgery, my thoughts would often wander to Gerald and I’d send up a little prayer for him. I would not know if the surgery was a success unless my recipient requested to exchange personal info with me. And that was not allowed until at least one year after the transplant. So it was out of my hands. But I still prayed.
A few days before Christmas, a year and a half after the donation, I got an email from One Match confirming that my recipient wanted to exchange contact info. My first response was over-the-moon elation that Gerald was still alive! Yes, yes YES! I sent my info immediately. I was so nervous. Two days later I received an email with the brief but shocking news, Gerald was a 24 year old female named Ashlinn!
Three weeks later, I received one of the most beautiful gifts I’ve ever known. An email from this gorgeous and vibrant young woman named Ashlinn, telling me that she was running in her first marathon, happy to be alive, and inexpressibly thankful to me for being a part of saving her life. There are no words.
I truly feel like it was a huge privilege and honour to be able to share a part of my blood with someone who needed it. I was, and still am, continually amazed at the miracle that enables two strangers to share life. Phenomenal really. The experience of being a bone marrow stem cell donor continues to be a very rich and meaningful one for myself and my family.