I recently had the life-changing experience of becoming a bone marrow donor (more specifically, a peripheral blood stem cell (PBSC) donor). As I learned more about how many people need a transplant and how small the bone marrow registry actually is, I knew this was an issue I would become passionate about. I want to share with you how surprisingly easy the process is, and to get the word out to encourage everyone to participate!
In this article, I’ll clarify some of the misconceptions about donating and explain the process of my own experience as a donor. As I always say, knowledge is power, and I want you to feel informed and empowered to get swabbed at SwabMyCheek.com and possibly become a donor yourself.
You can also see more about my donation process in this 3 minute video I made, which documents my experience.
Since the bone marrow donation registry was established 25 years ago, there have been 50,000 donations. To put this into perspective, there are about 800 million active users on Facebook, but only 9 million people on the bone marrow registry. Each year, roughly 10,000 people need a bone marrow/stem cell transplant and half will never find a match. Of those that do find a match, 70 percent do it through the registry, while the other 30 percent is done through family members. The registry is therefore extremely important, making it all the more critical to get more potential donors involved.
There are two types of donations. One way, which I did not do, is called bone marrow collection. This is a one-day procedure in which you receive anesthesia and stem cells are collected through the back of the pelvic bone. The other type is called peripheral blood stem cells (PBSC) collection, in which you take a 5-day course of medication that stimulates stem cell production, the stem cells are then donated through an IV. I’ve only had experience with the latter, so I can’t speak to the process of bone marrow donation itself, but I would like to explain the PBSC donation process and what it entails.
To get on the donation registry, all you have to do is get your cheek swab by going to SwabMyCheck.com, which means that the inside of your cheek is swabbed with a q-tip. That’s it! From here, the registry will look at your human leukocyte antigens (HLA), which are proteins that you inherit from your parents. If you have 8 or more HLA molecules in common out of 10, you’re considered to be a match. Swabbing puts you on the registry, and if you are found to be a possible match with someone who needs a donation, there’s an additional blood test to confirm that you are a true match. DKMS Americas, the bone marrow center I worked with, said that only 0.5 percent of those who get swabbed receive the initial call that they are a possible match, and from there, there’s only an 8 percent chance of being a true match and going on to donate. So, out of 9 million people on the registry, only about 3,600 will donate. This is why we need more people on the registry!
If you become a PBSC donor, you’ll get an initial medical check-up to make sure you’re healthy, and then you’ll take a 5-day course of a drug called filgrastim, which stimulates your bone marrow to produce and release a massive amount of stem cells into your bloodstream. After these cells are collected and transferred to the recipient, they’ll help him or her to produce their own marrow, making their recovery possible.
The 5-day course of treatment with filgrastim can cause some side effects for about 10 to 30 percent of people. The most common of these are bone pain, which was described to me as “flu-like symptoms,” and tenderness at the injection site.
Once you finish the course of injections and go for your donation, you’ll be hooked up to two IVs, one which draws blood out to be harvested for your extra stem cells, and the other which returns the rest of your blood back to your body. Getting an IV can pinch a bit when they start it, but otherwise all you have to do is sit back and relax!
When I got the call that I was a potential match, I was so thrilled for the news that I wanted to get started almost right away. I worked with DKMS Americas, which is the largest bone marrow donation center in the world, and I was amazed at how accommodating and helpful everyone I worked with was. The entire process was on my schedule and at my convenience, even though I knew there was someone waiting for these cells on the other side.
The health check-up and initial blood tests were very easy. Unfortunately, I got a cold the week before I started my filgrastim injections, so I was worried about being tired or worn out during the process. However, I was very surprised at how easy it was! While I received the first and last shot at the hospital, on the other days a professional nurse was scheduled to come to my office to give me the injections and answer any questions I had. On about the third day, I did experience a bit of stiffness and achiness, which reminded me of the period where I occasionally slept on the floor next to my daughter Abby’s crib when she needed company and wanted to hold my hand. On those days I would wake up a bit stiff in the morning, and the stiffness I felt from the filgrastim was the same.
On the fourth day and fifth (donation) day, I felt more tired than usual in the evening and ended up going to bed around 9pm, though I’m not sure if this was from the medication or just leftover tiredness from my cold. In any case, I was raring to go on donation day! It went as smoothly as I could have imagined. Everything was painless except for the initial pinch from the IVs, and everyone I worked with could not have been more caring, compassionate, and helpful. I spent most of the day at the hospital, arriving around 8:30am to do a final blood test, get the final filgrastim shot, and get prepped for the procedure. I went to breakfast from about 9 to 10am while we waited for the blood-work, and started the donation at 10:30am. I was hooked up to the machine for about 5 hours, and could read, work on my laptop, or watch TV. I was finished at 3:30pm and on my way home at 4.The next day, I woke up feeling a bit sluggish, which wore off after about an hour, and I was still able to go to work and get on with my normal everyday life.
Besides knowing I was possibly saving a life, the best thing about the process was being able to write a short note to the recipient of my stem cells. Even though any personal information is kept confidential, I was able to express my happiness that we were a match and to wish him good luck and a speedy recovery. I’ll receive an update about the patient at one-month, six-months, and a year. After a year, if we both are willing to sign a consent form, we can contact each other directly. It was really emotional to be able to get my best wishes on paper and to know that I was able to positively affect someone’s life in such a direct way.
Becoming a Donor
First off, all you need to do is go to www.SwabMyCheek.com and they will send you a swab kit in the mail. It’s that easy! You can also go to DKMS Americas or The National Marrow Donor Program online to find out more about the process, learn about the medical eligibility requirements. From this point on, each year you have about a 0.04 percent chance of actually being a match. The more people you encourage to join with you, the more possible matches we will have on the registry. Imagine that something so simple and relatively painless can have such a huge impact – Through a donation, you can help save a life.
You can also start a bone marrow donation drive in your neighborhood to encourage others to get swabbed. In a time in history filled with social movements, wouldn’t it be great if we could all come together and start a movement to double the bone marrow registry? To learn more about how to set up a drive, please feel free to contact me!
To learn more, browse through the websites of these great organizations, or watch the 3 minute (YouTube) video about my donation process. Let’s create awareness together! If you believe in the cause, post this on Facebook -YoutubeVideo Link- http://youtu.be/R4x0u0ONA_g , email it to everyone you know and use any other social media you think is best. I have a personal mission to significantly increase the registry. I would really love to hear from everyone who joins the registry and if you are ever chosen as a match. If you have any lingering doubts or questions about the process, or if you get chosen and want to learn more, please feel free to get in touch. I want to help inform and empower you to take this step and get swabbed!
I would like to dedicate this article to Lindsay Ann Rawot, who passed away in 2011 from lymphoma. I would also like to thank Jen, Jane, Amanda, and my beautiful wife Sally for playing a direct role in getting me on the registry.
Please note that this article is about my own personal experiences and opinions. You should consult a professional to learn about all the risks involved and to see how donating would affect you.
Written by Bradford Pine
Bradford Pine Wealth Group – New York City Financial Advisors
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