Well, it’s time to share something serious on this blog. It’s not all puppies and cocktails in Kate-land, you know?
The long story short is that I’m going to donate stems cells to a cancer patient. I don’t know the recipient. I’ve been asked not to share the few details that I do know about the patient, but I’ll gladly share what I can with you.
Here’s the long story: When I was a senior in high school, I watched an episode of an ordinarily silly sitcom (remember Popular?). It was about a character who needed a bone marrow transplant but couldn’t find a match. He was sick and dying, and even though every family member and friend wanted to donate their bone marrow to him, no one could.
The tragic nature of his situation struck a chord with me, and it stuck with me. I made a promise to myself that once I turned 18, I would go join the National Marrow Donor Program (NMDP).
Unlike so many of my good intentions that fall through the cracks, I joined the NMDP shortly after turning 18. Almost exactly seven years ago, I walked into the local blood institute and told the nurses I wanted to join the bone marrow registry. I filled out some paperwork and a nurse swabbed my cheek. That was it! The process took less than twenty minutes from start to finish.
Over six years passed. I went to college, had a blast, made mistakes, and learned a lot. I spent a semester in France. I graduated and eventually got a job. Every now and then, the registry would cross my mind. I wondered when I would be called to duty.
Late last summer, I got a letter from the NMDP. I had been identified as a potential match.
And so it began. That night, I filled out some basic information about my health online. Two days later, I went in for more blood tests. They seemed to be moving very quickly. I read online that there was only a 12% chance that I would be selected from all the potential matches, so I didn’t know what to think. A few months went by, so I assumed that they didn’t need me after all. Finally, I got a letter in the mail: I was a match, but they didn’t need me at the moment.
On December 3rd, the nurse called and informed me that I was indeed the best match. She asked if I would come in for more blood tests and to discuss the procedure with the doctor.
Before I spoke with the doctor, I was about 95% convinced I would donate. After all, someone needed me. I can only imagine the uncertainty, the hopes and the fears that the recipient must have felt about finding a donor. The night before I went in, I read through pages and pages of consent forms and physically shook as I learned more about bone marrow donation and PBSC donation, which are the two potential treatments. It was getting real, and I was scared.
The next day, I learned that the recipient is a young person, younger than me. From that moment on, I was 100% certain that I would go through with the donation. I felt that the recipient deserves to grow up, have fun, make mistakes and learn from them. More than anything, I hope the treatment will be successful and allow for a long and fulfilling life.
I endured a battery of tests to make sure I was healthy enough to donate. I went to the hospital for extensive blood tests, an EKG, a chest X-ray, and more. Fortunately, I passed all the tests with flying colors. It’s easy to take our health for granted when everything is running as it should, but this is the first time that my health will directly impact someone else. I’ve never been more thankful for my health and more motivated to maintain it.
I also learned that I’m going to donate peripheral blood stem cells (PBSC’s) instead of bone marrow. The success rates for PBSC donation are generally higher, and the donation process is less invasive. Basically, instead of drawing stem cells directly from the bone, they will inject me with a medicine called Filgrastim that increases the number of the stem cells growing in my bones. A small portion of those stem cells will be released from my bones and float through my blood stream.
After five consecutive days of injections, I’ll go to the Oklahoma Blood Institute to donate those stem cells (the peripheral blood stem cells) through a process called apheresis. Once they have collected enough PBSC’s, a courier will fly with my cells over to the recipient, who will be prepared to receive the transplant. Pretty rad, right? My cells flying in an airplane, on their way to save a life?
I’ll stop here. I’ve tried to explain everything in layman’s terms so we’re all on the same page. I’d like to share some interesting facts about donating stem cells and the rest of the story, if you’re interested. Today, I’m going to receive my first shot of Filgrastim. I’m nervous and scared, but excited. Wish me luck!
Update: you can read a follow-up post about my experience donating peripheral blood stem cells here.
Please join the Be The Match Marrow Registry. If you’re willing and able, please join. Odds are that you won’t ever be selected as a best match, but please be there in case someone needs you. Learn more about how to give here. Thank you!
That’s so amazing, you’re incredible. I hope it all goes well :)
Thanks, Jean! I’m just hoping for the best possible outcome. Maybe someday I’ll get to meet the recipient!
That’s such an amazing thing that you’re doing. Quite a way to start the new year!
KATHRYNE what a selfless thing to do. I’m really proud of you for doing this, let me know how it goes!
Good on you Kate. For the past 15 years I have worked in a lab that does the family matching tests for BM & PBSC. There is only a 1 in 4 chance that a sibling will be an identical match, so you can see how very important the Unrelated Bone Marrow Donor Registry is. You are truly an angel to someone out there !!
Wow! I’m surprised to learn that you work in one of those labs, Deb!
I was really struck by that statistic when I was researching PBSC donations and HLA matching. I have two brothers, and it is scary to think that I may not be able to help them if they ever need a stem cell transplant.
That’s partly my motivation for donating–it’s for all of the brothers and sisters out there who are hoping that someone will be there for their sibling in need.
amazing! good luck.
That is so amazing, Kate. I hope everything goes well :)
Way to go Kate! I joined the Canadian version of the bone marrow registry last year. Now I know a bit of what to expect if I ever get matched with someone. Good luck with everything and good for you for writing about your experience and raising some awareness!
Kerry, I’m so glad you’re on the registry! Way to go! I’m planning on posting more about the experience soon. So far so good!
Kate, thanks for sharing! It’s very inspirational indeed. It is amazing to think that our personal health can effect someone else’s. I’ve thought about it in terms of collective health benefiting the globe, but never so personally. Again, thanks for a new way of thinking about it and for sharing.
Thank you, Kathryne. You are my inspiration. Praying for both you and the recipient.
Beyond impressed. What an amazing thing you are doing.
wow kathryne. Good luck. That is really inspiring!
I read this post when you first wrote it but was distracted before I had the chance to tell you that I AM SO IMPRESSED with you Kate!! That is a wonderful thing to do and I couldn’t even imagine what it must feel like to save someones life. You are truly an inspiration to us all!
I signed up for the registry this past April and I have already been identified as a match. This Thursday I’m going in for the physical and blood work, and I really hope everything goes through so I can donate.
You are wonderful and it’s really great to see someone in the same boat. :)
Way to go, Liz! I’m so glad to hear that you’re close to donating stem cells. I would truly do it all over again in a heartbeat. It’s been a year now since I’ve donated, so I’m hoping to learn more about my recipient soon. I hope hope hope he’s doing well!
I’ve just received my second Filgrastim shot. To anyone who is concerned about receiving their shots, don’t worry. It makes you uncomfortable, like all your bones need to crack but it’s a small price to pay to save another person’s life. Thank you for this post
Thank you, Jenna. You’re doing a wonderful thing. I hope all goes well with your donation and that you feel like yourself again soon!
I am in the confirmatory testing phase. A one in twelve chance they say for being his ideal match. I’m nervous but trust the outcome will be what’s best for him. Thanks for sharing your experiences.
Good for you, Linda. I’m hoping for the best!
I’ve read this several times before, but reading this again just now with the coffee mug you gave me sitting here on the table next to me, steaming gently, is the first time it has made me cry. Thanks to you, I will get to grow up, have fun, make mistakes and learn from them, just as you were hoping for me.
You are wonderful, with a compassionate, old soul and I could not be happier that you came into my life at the exact moment I needed you to.
Thank you, Bill, that means more than you know.
Thanks for sharing your story! I was googling the process and came across your blog. I was JUST notified today that I’m the best match and will start the process of the
physical, EKG, X-Ray and etc. next week. This is so exciting and I’m honored to be chosen as I’m sure you were too!
Jenny, I’m so glad to hear that you will be donating. Please let me know if you have any questions about the process! I would do it again in a heartbeat.
I start my process soon. Thanks for the article. My family is more nervous than I so they will be glad to hear your info.
I made all my coworkers get swabbed last March for a woman in the community who has 4 kids and is dying of cancer. Last week I received a phone call saying I am a potential match for a 37-year-old woman. Under normal circumstances, I’d be ecstatic to help someone. I just delivered a baby less than 2 months ago and am nursing. It’s very tough knowing I’d have to give up nursing, for I’ve waited almost 34 years to become a mother and my goal was to nurse for 12 months. Crappy predicament but I realize this 37-year-old woman may have children of her own and that my son will do just fine with formula. I’ll get over it emotionally and wanted to thank you for posting your story.
Rana, thank you for commenting. You’re doing a wonderful thing.
Thanks for posting this Kate! I have just received word after ’19 YEARS’ of being on the registry that I too am a possible match…I was so excited and I cannot lie a little scared (might be why I’m doing a little research LOL). Now begins the process to see if I am the best match.
I will be directing my mom to your blog…she’s a nervous wreck!
Elaine, I’m so glad to hear you’re a potential match! You could save a life. If it’s any reassurance for your mom, I felt back to 100 percent in less than a week after the transplant, and my recipient is alive and well!
I was just browsing through the deliciousness here and come across this.
I´m really glad I did, I didn´t even know there was such a thing. Twenty minutes later and I am now signed up for the swedish version. Thanks!
ps. I made the peanutsoup with fresh spinach earlier today, so satisfied!
Hi Agnes! Thank you for commenting. I’m so glad to hear that you joined the Swedish registry. You could save a life! Also happy to hear that you enjoyed the soup!
Hi I know i’m late to the game on this and realize this is a silly question….but who pays for all of the testing, shots, hospital visit etc ? Do you use your own insurance for this ? I’m just wondering as a person who does have insurance but very large deductibles etc, i would hate to join a list, get selected and then realize it would cost thousands for me actually fully go through the process. I assume there is something in place for this but I’m just wondering.
Hey Tara! That’s a very good question. The bone marrow foundation and the recipient’s insurance covered all of it. I paid nothing.
I did my initial labs today after being identified as a match last week. I’ve been told PBSC is my recipient’s preferred method, so I’ve been scouring the internet for information. I have a huge fear of needles – so much so, that I delivered 2 children w/o drugs (not even a heplock), and have fainted watching other people get shots, donate blood, an even just from being in the room supporting a woman (as a doula) who was getting an epidural. So yeah. But I made it through 6 mega huge tubes of blood today w/o passing out, so that’s a victory for me. I just kept reminding myself that someone is facing death, and this is nothing when I know I’ll be able to sleep w/o fear tonight.
My next biggest mental obstacle is the filgrastim injections – where do they inject this stuff? I can’t seem to find that anywhere online.
I really appreciated being able to read your post-donation post as well. It really helps a lot to hear donor accounts of the process in my quest to prepare myself mentally for this.
If it’s easier, feel free to utilize my email to reply to my questions. I appreciate any info/insight/tips you can share about the process leading up to the donation.
Meredith, I think it’s so awesome that you’re willing to donate even with your fear of needles. They can inject Filgrastim anywhere, I think. They asked me where I’d prefer. I actually opted for my stomach, which sounds crazy, but that’s because it hurt less there than elsewhere. Please let me know if you have any more questions!
P.s. I really do not recall the shots being painful, for what it’s worth.
I just wanted to say thank you for this post! I read another one of your posts originally that gave me the information on your donation. I had never thought to donate before or even really knew about it. I just signed up and have you to thank. So truly, thank you!
Marissa, thank you so much for signing up! You might save someone’s life someday. :)
Thank you for doing this! My brother died of leukemia 8 years ago, but we did get an extra year with him because of a transplant from a donor. My entire family is on the registry and I hope one day I’ll get called to donate.
I’m so sorry to hear that! I can’t imagine. You are so welcome!!