Last month, I donated bone marrow to a stranger with a life-threatening disease. It has been an experience with pain, suspense, and hope. Ultimately, it’s about saving a life, and I hope that by sharing my story, others will be encouraged to register to be a donor and additional lives can be saved.
Image: Thirteen of Clubs via Flickr
It started a couple of years ago when a mother of my son’s classmate was diagnosed with leukemia. Rachel was a young, beautiful mother of two, and I began following her journey online. Rachel’s blog was painfully honest, hysterically funny, and inspiring. She began a crusade to get everyone to donate blood and register to be a bone marrow donor. She did end up finding a match and getting a bone marrow transplant, which allowed her to spend additional, precious time with her family, but she ended up relapsing and sadly lost her battle.
I was so affected by her story. One day, there was a Be The Match registry drive at work. I had to register. It was really easy: they swabbed the inside of my cheek, I gave them contact information, and that was it.
Flash forward to this summer when I received an email from the Asian American Donor Program (AADP) (a Be The Match recruitment agency serving the multi-ethnic community) saying I was a potential match for someone. I learned that due to the critical need for ethnic minority participation, AADP is funded by Be The Match to encourage everyone, specifically the minority communities to register. According to the Be The Match site, a patient’s likelihood of finding a matching donor ranges from 66% for African-Americans/Blacks to 72% for Hispanics/Latinos to 73% for Asians/Pacific Islanders to 93% for Whites. A match is more likely when there is a similar ancestry. Therefore, it is critical for the donor registry to be diverse.
I was surprised to be contacted so (relatively) quickly, and I am not sure if my Hispanic background was a factor, but I did not hesitate to move forward with the next steps of the process. First, I answered a lengthy medical history questionnaire to make sure I was appropriate to donate – questions ranging from height and weight, to are you pregnant, to have you ever had sex with someone who had sex for money or drugs! The questionnaire was intended to initially screen that I was healthy enough to go through the procedure and that there wasn’t a risk of passing along any infectious diseases to the patient. Then, I went to a lab where they took many vials of blood for testing (including a pregnancy test).
The literature said the chances I would be a match were about 10%, so I was pretty sure it wouldn’t pan out. Then, I received the message that I was indeed a match and was asked if I would be willing to donate – either through PBSC (peripheral blood stem cells) or bone marrow donation. I read through the risks as did my husband. I didn’t hesitate -- I said I would do it.
Once you commit to donating, it is critical that you go through with it. First of all, you are providing hope to that patient and their loved ones. From a physical standpoint, the patient has to get prepped to receive the donation, which means an intense course of chemo and bringing the immune system down to zero, so that the donation won’t be rejected. It can be life-threatening if the donation doesn’t come through at this point.
There are two different procedures that are used: PBSC or bone marrow. The patient’s doctor determines the appropriate course of treatment. PBSC consists of receiving injections for a few days to increase the number of blood stem cells in the bloodstream and then 1-2 several-hour procedures (apheresis) of donating blood from one arm, which then goes through a machine to extract the blood-forming cells, and then the blood is returned in the other arm. The procedure I was asked to do was bone marrow donation, which is a surgical procedure where a needle is inserted through the lower back into the pelvic bone to extract the bone marrow.
Once I agreed to be a donor, I went through an information session where a donor representative walked me through the process. I signed consent forms. I had a physical exam, including more blood work, a chest x-ray, an EKG, and they checked my veins (more important for the PBSC procedure). I went to American Red Cross to donate a pint of blood to store for the procedure, which is called autologous blood donation. And I took one more pregnancy test.
Donors do not have to pay for anything to donate. Be The Match even reimbursed me for mileage for when I had to drive anywhere (for lab tests, blood donation, medical exams, the procedure itself) and put my husband and me up in a hotel close to the hospital the night before the procedure.
Finally, it was time for the procedure. I had been told that I would be given general anesthesia, the procedure would take about an hour, and I would most likely go home that same day. As for recovery, I was told I would have some pain and discomfort in my back and that it would take a few days to a few weeks to go away. Most people go back to work after a couple of days.
The day of the procedure, I arrived at the hospital at 5:30AM for the 7:30AM procedure. I checked in, got in a hospital gown, and was hooked up to an IV. Of course, more blood was taken. I think they even did one last pregnancy test! Pregnant women can’t donate, so they take this very seriously.
Finally, I was wheeled to the operating room. The anesthesiologist asked me to imagine being in a relaxing place and asked where that was. I replied, “Hawaii.” He asked which island, and I said, “Maui.” He asked what time of day it was, and I answered, “afternoon…” The next thing I heard was a nurse saying “You’re in recovery and doing great!”
I was in recovery for a little while where I rested and received my blood transfusion. I was then brought to “surgical day care” to continue to recover. I carefully drank some water, then juice, and then got crackers. I was able to sit up gingerly and walk to the bathroom with the help of a nurse. My husband, who had been in a waiting room all this time finally got brought in to see me. The doctor had given him an update and told him they were able to extract a good amount of bone marrow and that it was already on its way to the patient.
I do have to say that it was more painful than I thought it would be. I had four punctures on each side of my back with bruising, but that wasn’t painful. The painful part was the lower back muscles, which were obviously not happy to have been stabbed with a needle eight times! It was difficult to walk or do any movements that required using back muscles, which I found out was quite a lot!
Finally, after more blood was taken to test my hemoglobin levels, it was time to go home with instructions to change the dressing daily, take pain medication around the clock for 24 hours, and eat a well-balanced diet with iron-rich food to help my body regenerate the blood and bone marrow (which takes 4-6 weeks).
When I got home, my husband and two sons were so sweet and took wonderful care of me. They brought me crackers and juice, and I was able to lean on my sons to walk to the bathroom. My husband made me the most delicious chicken noodle soup with iron-rich spinach! I had an ice pack and medication to manage the pain. I spent that first night on the couch but was able to walk to the bathroom by myself by the time I went to sleep for the night. The next day I was able to walk upstairs to the bedroom.
From there, each day got easier. The back pain lessened every day. The procedure was on a Thursday, and I went back to work the next Tuesday. Going back to work was hard, because the back was still quite painful. I used an ice pack while driving my hour-plus commute, took Tylenol, and just moved slowly and carefully. After about a week, I started using ibuprofen, which really helped, since it is also an anti-inflammatory. After the second week, I would say I was 90%+ recovered. Today, over three weeks later, I am at 99%. I still feel a twinge now and then, but most of the time, I am moving around with no problem and not even thinking about it.
I am told that I will get a report on how the patient is doing in 30-45 days. All I know about her is her age, her disease, and that she is in the United States. I really hope that my bone marrow helps her and can’t wait to get that first update. I will get another update at 6 months and then at one year. At the one-year mark, if we both agree, we can find out who each other is and directly communicate. I would love for that to happen, because I already feel connected to her.
When people find out what I have done, the reaction is overwhelming. I have heard that I am a hero, that I am brave, and that I am blessed. It’s a little embarrassing to get that much praise, when it didn’t seem real until I actually went through it. I know it’s a big deal, but if you are told that you can save someone’s life in return for a few days of pain and discomfort, how can you say no?
I would like to thank the many people that supported me through this process. Thanks to my Be The Match Donor Representative for explaining everything so clearly and checking in on me regularly. Thanks to the staff at the hospital where the procedure was done. Everyone was so nice, friendly, and appreciative. Thanks to my manager and colleagues at work for their understanding and for covering for me while I was recovering. Finally, thank you to my family, my children and, most of all, my husband for being there every step of the way, supporting me, and taking care of me. I couldn’t have done it without him.
Soon after the procedure, my sister asked if I would do it a second time. Each day that passes, I am more confident that I would. When I think about the pain and suffering that Rachel and others like her have gone through, both from the disease itself as well as the treatment, I realize that what I have been through is nothing. I would absolutely do it again, and I encourage everyone to register to be a bone marrow donor. It truly is a wonderful program that provides hope and saves lives. Many more donors are needed, especially from ethnic minorities, and you could hold the key to someone’s life within your bones! Go to bethematch.org or www.aadp.org for information on how you can register.
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