All Things Stem Cell Donation: Insight Into the Stem Cell Harvesting Process
Last updated: May 2022
Last year, I launched a web project titled The Diary of a #SickleCellProdigy – a content series that gives audiences a closer look at a patient's life with and without sickle cell disease. 2022 marks the second installment of the series, and for the month of January, my first guest was my stem cell donor and older brother, Dapo Bakare.
Far too often, we hear stories from researchers, transplant recipients, and caregivers. I wanted to sit down with my brother so he could give the global sickle cell community insights into his experience as a donor and tell the story of how he helped save my life.
What sickle cell has stolen
My first hospital admission for a sickle pain crisis was at age 2, with my first major surgery at age 7. The year before, we lost our aunt to complications from sickle cell disease. She was only 32! Sickle cell anemia has robbed our family of many great memories and even greater people.
I reached my breaking point
In 2015, we took a family vacation to Seattle, Washington, to spend the summer with my brother, and shortly after, I was diagnosed with disseminated mycobacterium avium complex (MAC) infection and spent months in the hospital fighting for my life.
The saddest part was my brother had a front-row seat to all these traumatic events. One year later, I had reached my breaking point, so I decided to explore curative therapies for sickle cell disease.
Finding a stem cell match
For an allogeneic stem cell transplant, patients must have a well-matched donor as the best transplant outcomes happen when the patient’s human leukocyte antigen (HLA) and the HLA-type of a family member closely match. HLA types are inherited, so siblings can be a match for each other. Healthy brothers and sisters who have the same parents have a 1 in 4 chance of being a complete or full match.
Exactly one week to my 30th birthday, we were notified by the National Institutes of Health (NIH) that my brother was a match. Overwhelmed with tears of joy, I couldn't help but wonder: "This is surreal. Who could've known that my miracle was right beside me for all of my life?!"
The donor relationship: Q&A with my brother
My brother and I are yin and yang. Our connection and bond as siblings is strong because of shared experiences over 3 decades, and quite frankly, it's always been just us 2. Our parents raised us to always look out for each other.
Being a sibling donor means 2 things: fulfilling your duty and saving the life of your chronically ill brother or sister. In our case, the stem cell harvest and transplant process sealed our fate as "pseudo-twins."
1. When did you decide to move forward with the stem cell donation? Did you seek medical advice from a physician or rely on research information online?
When you came back from your mission trip to the NIH with the HLA screening kit in hand, I saw how determined you were to be free from sickle cell, so at that moment, I decided I was going to support you. Over the course of your life, you've had over 60 hospital admissions, 7 critical surgeries, and a number of blood transfusions/exchanges. I've watched the quality of your health progressively get worse, and that's been extremely hard on our entire family, so this was an easy decision to make.
2. What were some of your personal fears before embarking on the donation journey?
During the pre-screening process, some friends had mentioned how terrifying the retrieval process might be, especially with bone marrow transplantation, but that wasn't my primary fear. As a newly married man with an expectant wife who was also juggling a tech start-up, the logistics, planning, and time management were the most tasking parts of the process for me. In the past, I could make decisions on my own, but with a family, I needed to consider a lot more things.
The stem cell harvesting process
3. Can you share some of the pre-testing and harvesting procedures that took place?
When I arrived, I was scheduled for a series of tests similar to an annual physical exam. It was explained that these tests were done to check the condition of major organs like the lungs, liver, kidneys, and heart. There was also a neuropsychological test that involved memory games, cognitive and problem-solving exercises, and motor-function tests.
To boost the number of stem cells in my blood, medications were given 4 days prior to stimulate their production. The stem cells were then harvested using a special apheresis machine. Blood was removed from 1 arm, passed through a filter, and then returned through the other arm. It took about 5 hours of lying completely still, so I watched some movies to pass the time.
4. At what point did the donation process start to take a toll on your mental, emotional or physical health?
For me, the most challenging part of the process was the day after harvesting, which I like to call the post-extraction period. I woke up with a weird stabbing pain in my leg that lasted for weeks. It hurt so much that I started limping. No one could explain what was going on because other donors hadn't experienced it, which added to the anxiety I felt. Powering through pain alone in a hotel, far away from loved ones wasn't easy. What exacerbated things was the lab had found something in my test results that showed a possible risk for cancer.
Dealing with business-related matters, I didn't get a chance to speak with the doctor who had left a concerned voicemail on a Friday evening. So I waited anxiously through the weekend, panicked and seemingly going through a range of emotions. It wore me out mentally, but I didn't want to worry my wife or family, so I leaned on my cousin in London for support.
5. What advice do you have for prospective sibling or familial donors?
My advice to prospective donors is to find someone who can be a source of support for you as you go through the donation process and save money for miscellaneous expenses that might occur. Don't be afraid to ask questions, and remember you are giving the gift of life.
To watch the full interview, search "Diary of a #SickleCellProdigy" on YouTube.
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