Many people have been curious about my recent bone marrow experience, so here’s a journal that recaps what the entire process involves.
8 years ago, I was at a nightclub where a friend was hosting an event with the Asian American Donor Program. Yes, this was where I registered for Be the Match with a simple q-tip swab of my saliva. After that, didn’t really think twice about it. Fast forward 8 years later, I receive a call from Be the Match.
This is where my journey begins.
Day 1 – The call
Be The Match registry called and told me I have been identified as a possible bone marrow match for a teenage girl with leukemia. I don’t think I processed exactly what they were telling me then and there, but after a briefing over the phone, I agreed to follow through with the process.
Day 3 – The survey
A follow-up call where I had to complete a 30-minute survey with questions from personal history to overall health, travel and, oh yea, my sex life.
Day 7 – Blood testing
Next came blood testing. This would be the first needle experience of many to come. They collected 8 vials of blood and shipped it off to a doctor for further examining.
Day 39 – The match
A few weeks go by and I got another call from the registry telling me, “the doctor has confirmed that YOU ARE THE MATCH for the patient, and would like you to move forward with the process immediately.” Whoa!!.. I couldn’t believe what just happened — I was speechless. They said they’d send me some packets, reading materials to help me learn more about the program and the process. Good, because I had a ton of questions. Plus, I needed to talk to Q, too.
Day 42 – Getting informed
My initial thoughts were, not going to lie, pain and side effects. The Be The Match coordinator did remind me I could back out at any time. BUT if I do decide to proceed and then back out later and closer to the operation date, the patient will likely die. Umm, no pressure there.
I learned there are 2 donor procedure options:
Peripheral blood stem cell donation: This is method is less intrusive as it doesn’t require surgery, rather blood injections and collections. More than half of bone marrow transplants use this method. I’m secretly hoping that this method is OK.
Bone marrow donation: They extract your bone marrow through the back hip area. A sufficient amount for my match would be 1 liter of bone marrow. Worst thing that can happen is complication due to anesthesia or damage to bone, nerve or muscle in the hip region.
Day 45 – Decision day
While I never really seriously considered backing out of the process, I did have have moments and thoughts of pain and side effects that could come with this. That night, I must have read the packet inside and out. Then went on and research some more online. In the end, what I may endure and am giving up really isn’t much at all to possibly save someone’s life. I decide to move forward, fill out a lot of paperwork and send it in the mail.
Day 59 – Physical exam
5 hours at Stanford Cancer Center. It’s super clean, modern & nice. The day’s testing involves EKG, chest x-rays and 15 more vials of blood being collected.
Day 66 – Blood collection day
I’m due for a visit to the local Red Cross so they can collect a pint of blood from me in case I need a transfusion with my own blood after the operation. Apparently a large amount of blood is drained during a bone marrow harvest. Go figure.
Day 79 – Pre-Op
I go to Stanford to get needled up for more blood testing to make sure I’m in tip-top shape. My blood cell count is a little low because of my blood collection 2 week prior. After I get the green light from the doctor, I meet with the general anesthesiologist to prep me for the next day. The hardest thing is not being able to eat or drink anything for close to 8+ hours. Anyways, Q and I stay up in Palo Alto for the night and have Burmese as our ‘last meal’ before the big day.
Day 80 – Operation Day
Q and I head to the hospital in the morning, my name is called and I get the feeling that there’s no going back now. Just when I think I’m finally done with needles, they test my blood one last time before the surgery. I get an IV plugged into me. Then the nurse injects me with sedative, telling me “You’re going to feel a little drunk…” Then I’m off to the races.
They wheel me off to the operating room, I see a a bunch of people moving around and a lot of lights. 1 minute later, I black out and don’t remember anything at all.
Q recalls the doctor in scrubs exit the surgery room with cooler in hand, presumably delivering my bone marrow out. It was like a scene from Grey’s Anatomy, she told me. We found out the marrow was shipped out immediately… on a plane to somewhere else in the country.
2.5 hours after surgery, I finally wake up and feel extremely exhausted like a vampire sucked out my energy and of course lots of blood. I wake up with what feels like a thick diaper pad on my back. It turns out to be a lot of gauze and tape. About an hour or two later, I’m discharged!
Day 81 – Day Post-Op
I return to Stanford for a check-up and everything turns out OK. The nurses we met claimed Asian bone marrow donors are a rare breed, and it’s so hard for Asian patients to find a match outside their family. Once I’m home I also get welcomed to an awesome super hero themed gift basket from my work!
Day 86 – 1st day back at work
A few days after the operation, my energy starts to feel somewhat steady, so I decided to go back to work. An hour or two after making into the office, I already feel the fatigue coming and going into the office didn’t seem like a good idea anymore. Normally donors head back into work a full week after a bone marrow transplant operation, maybe I should’ve stuck with that instead.
Day 88 – 1 week post-recovery
They say this is the time when most people return to normal daily activities. That primarily involves basic tasks like going to work or running errands, not physically demanding activities like sports or exercise.
My energy is almost back to normal, but I still feel a sore bruised soreness in my back hip bone area. Probably because the holes are trying to heal up! The most uncomfortable thing I had to deal with was rashes around the bandage area. Apparently my skin doesn’t react well to adhesives.
Day 112 – 1 month post-surgery
I feel good. I’m back to my normal exercise routine and energy levels are back to normal.
Day 123 – Back to 100%
My bone marrow at this point should be fully replenished. My insertion scars are still there, but should fade over time. Until then, they will tell a good story.
And, the update I’ve been waiting to hear.
I finally got my first update from the recipient’s doctor this week. The recipient has engrafted, which means their stem cells have started to produce healthy blood cells, and she will soon be discharged from the hospital! Overall recovery is going well. Thank goodness for that!
I know there is a long road ahead to a full recovery for this girl, but it made my day to hear that she is off to a good start. I really feel that it was an honor to be able to have this experience, the support I received from friends and family was just unbelievable and overwhelming.
I really hope to get a positive update one-year from now and possibly meet my match. Until then, I wish her all the best and to stay strong.
I would like to thank my Be The Match coordinator and the entire staff at Stanford for making my experience run as seamless as possible.
Be the next cure and register for Be The Match.
Part 2 – Discovering the Identity of my Match
Part 3 – Meeting my Match