A True Story, Plus 6 Myths, About Bone Marrow Donation
Advocacy Discover one remarkable donor’s road to a life-changing match, plus six commonly held misconceptions about the transplant process itself.
What does it take to register as a potential donor? Just a swab of your cheek. And that is what donor Emily Busse did. She actually donated twice to her recipient. Here is her life saving story:
A sudden emergency
In 2013, my younger brother was attending MIT for his undergrad. His fraternity brother, Paul Uche, was diagnosed with acute myeloid leukemia in 2012. The fraternity helped organize a large bone marrow donor drive in search of a match for Paul. Inspired by their efforts and Paul's fight, I registered as a potential donor online in May 2014. Four weeks later, on June 19, Paul sadly passed away.
Four weeks after that, on July 18, I got an email with the subject line: "Emily, You're a Match." When I received the email I was stunned, but I was also scared. I had read about the donation process before registering, but I didn't know the details.
Overall, donation was easy compared to all the poking and prodding and the illness that recipients are going through with treatment. I felt excited and privileged to donate. That said, it did not come without some anxiety. My mom is a nurse, and she was understandably concerned about the minor risks of anesthesia that they give during bone marrow extraction and risks associated with putting in a central line as they do during stem cell donation. That added a little bit of stress because I didn't want to worry my mom and I obviously didn't want anything bad to happen to me. But that slight anxiety was outweighed by my commitment to helping someone with this unique match we shared.
My first step
The first donation took place in September 2014, and was a surgical bone marrow harvesting. I was so lucky to have a supportive and understanding employer who allowed me to take sick time off for my time away from the office. The actual procedure only took half a day. I definitely had some soreness and some minor pain from the incision, but it was gone by the next Monday and I was back at work with what felt like only light bruising.
“Although they were not able to find a donor in time for Paul, I would have never signed up and donated to my recipient had I not heard about his life and his fight.”
The donation was successful and the recipient was out of the hospital feeling well and taking walks. I was so happy. Five months after the donation, I sent him an anonymous note wishing him well. That same week, I found out he had developed a bad infection and needed a booster from peripheral blood stem cell donations. I agreed, and was flown to San Diego with my boyfriend for the donation in May 2015.
Another chance to help
Although the 4 to 5 hour process wasn't as fun, it was over quickly and after a short nap that afternoon, I honestly felt 100 percent. We even got to spend some time on the beach in San Diego.
It's been nearly a year since the second donation, and one-and-a-half years since the first. I never heard how the recipient is doing currently. I understand that it may not have saved his life, though I sincerely hope he is still okay. I'm just so honored to have donated. I shared my story with coworkers and friends, and at least three people registered as potential donors because of me — but really, because of Paul.
Finding your cause
I never knew Paul, but witnessing the outpouring of grief and love from my brother and his friends, getting that email saying I was a match only four weeks after his death was so meaningful and meant so much to my brother. Paul was the inspiration for me signing up. Although they were not able to find a donor in time for Paul, I would have never signed up and donated to my recipient had I not heard about his life and his fight.
Throughout the process, so many people said to me, "Wow I could never do that." I used to say the same thing. I really think that more people would donate if they knew how easy it was to save a life. Agreeing to sign up is honestly the hardest part. Once you hear that one person out there needs your help and you have the chance to potentially save them or prolong their life, it's not hard to say yes. In fact it's 1,000 times harder to say no at that point.
I will always remember my experience. I am so happy that I had such a life-changing opportunity.
Becoming a lifesaver, being a hero or giving someone a second chance is a rewarding experience. It can also be terrifying. To ease these anxieties, here are the facts you may have the wrong idea about.
Myth 1: Bone marrow donation is invasive and painful
In the majority of cases, bone marrow is collected via the bloodstream, through peripheral blood stem cell donations, similar to donating blood. In the roughly 25 percent of cases when a bone marrow donation procedure is required, the donor receives general anesthesia, so no pain is experienced during the extraction, which takes about 30 to 45 minutes as an outpatient procedure.
Myth 2: Bone marrow donation is risky and bad for my health
Despite the many misconceptions that surround it, marrow donation is harmless. If a person is identified as a match, he or she will donate using one of two outpatient methods depending on the needs of the patient-peripheral blood stem cell donation or bone marrow donation. For both donation procedures, the amount of stem cells collected is only a fraction of the donor’s body total.
A donation does not weaken the donor’s immune system, and the cells will naturally replenish themselves completely within a few weeks. There are side effects with both methods, ranging from headaches to bone and muscle fatigue and stiffness. In both cases, the side effects will diminish within a few days.
Myth 3: I don’t have time to donate bone marrow
Donors are usually asked to donate 1 to 3 months after the confirmatory blood test. DKMS will always try to give 3 to 4 weeks’ notice and accommodate the donor’s schedule. For stem cell donations, the entire procedure takes roughly 4 to 6 hours over the course of one day. The bone marrow extraction process takes 1 to 2 hours. Donors normally do not stay overnight in the hospital, and most can return to work, school and their normal schedule within a few days.
“Peripheral blood stem cell donation is the method used in 75 percent of cases, which is a non-surgical procedure that collects blood stem cells via the bloodstream.”
Myth 4: The need for registered donors is not critical
The need for donors is crucial. Each year, more than 170,000 Americans are diagnosed with hematologic cancers – cancers of the blood, bone marrow and lymph nodes. A majority of cases involve patients of all ages who are diagnosed with leukemia, lymphoma and sickle cell anemia. That’s one diagnosis every three minutes. Every 10 minutes a patient dies from one of these diseases.
With only 30 percent of patients fortunate enough to find a match within their family, the vast majority of patients in need of a transplant must rely on unrelated donors to help save their lives. Unfortunately, the reality is that less than 1 percent of registered donors will qualify to go through the transplant process, so the need for donors is critical, especially for those from racially and ethnically diverse communities who face much lower odds of being able to find a match.
Myth 5: Bone marrow is taken from the spine
The donor’s spine is unaffected in the collection of bone marrow. Peripheral blood stem cell donation is the method used in 75 percent of cases, which is a non-surgical procedure that collects blood stem cells via the bloodstream. The donor's blood is removed from one arm and passed through a machine that extracts the blood stem cells. The remaining blood is returned to the donor through the other arm. For bone marrow donation, which is the less common method, marrow is extracted from the back of the donor’s pelvic bone, not the spine, using a special syringe.
Myth 6: Bone marrow donation is expensive and will cost me money
There is no cost to the donor. Let us repeat that: there is no cost to the donor. There are organizations available that will cover all of the donor’s travel costs, meals and lodging expenses. There are also financial assistance programs that help qualified donors cover any financial wages lost during the process. The patient’s health insurance covers the costs of pre-donation exams and the donation procedure itself. A donor’s insurance will never be used.