I recently donated peripheral blood stem cells with Be The Match, the national marrow donor program. It has been such a rewarding experience and I encourage anyone who is able, to sign up and give someone hope!
I donated stem cells one week ago today. I haven’t shared my donation with many people yet, but so far everyone I have talked with about it has asked lots of questions. So, I thought that it was worth dedicating a blog post to the topic.
This post is lengthy because I wanted to share as much of my experience, as openly as possible. If you aren't into reading you can skip to the subjects you are interested in or just head straight to Be The Match to get more info and to register as a donor 😉
Signing Up for the Registry
Joining the be the national marrow donor registry has been something I have wanted to do for a while. Organ donation is near and dear to my heart. My 13-year-old son Trenton will likely need a heart and possibly a liver transplant in the future due to a congenital heart defect.
Obviously, I can’t donate many organs right now. But, donating stem cells (bone marrow) seemed like a relatively easy way to sort of pre-pay it forward and support a cause that I am passionate about.
Even though I had intentions of signing up for several years, it was something that just kept slipping my mind and getting pushed to the bottom of my ‘to-do’ list.
Then, in late October of 2021 as I was scrolling IG stories I saw one of my favorite creators (@sharonsaysso) suggest signing up for the Be The Match registry as a way to do some good in the world. I instantly swiped up and started the process.
A week or so later I was sent a collection kit. I swabbed my cheek, returned the kit, and didn’t put much thought into it after that.
The collection kit only requires a simple cheek swab similar to a DNA test. The kit also includes return postage so when you are done, you just drop it in your mailbox.
In December I was notified that my kit had been processed and I was officially part of the registry. I still wasn’t really putting much thought into it and honestly, never thought I would be matched with anyone.
Getting the Call
Much to my surprise, in February, just 2 short months after being added to the registry I got the call that someone needed my help.
Actually to be fair - I was initially contacted via email, then text message, then phone call. I won’t lie - it took me a few days to respond! I have lots of anxiety with medical procedures and I think part of me was still in disbelief that I was a match for someone.
Finally, one day as I was sitting in the pickup line at my son's school I bit the bullet and returned the call. The person on the other end of the phone was so nice and put me completely at ease.
We spoke a few times over the next couple of days. We went over my medical history, potential timing of the donation, the donation process, and they answered my many questions.
At this time, I was also given a little bit of info on the person who needed my help. Be The Match is limited in what they are allowed to share, but I was told that the recipient was a 33-year-old woman in Europe, with acute myeloid leukemia.
When it was determined that none of my medical history excluded me, I was sent for some initial lab work.
You can find a list of which medical conditions exclude you from being able to donate here (note: there probably aren't as many as you think!) and for detailed questions about specific conditions call 1-800-MARROW2
After my lab work was done, I was told that I shouldn't expect to hear anything for at least 90 days, and that it would most likely be about 6 months before my recipient would be ready for a transplant.
I was also told that the recipient could potentially have matched with several other people. The best match would be chose by her medical team based on health and genetic factors. Since donors under age 35 age usually preferable, I once again put it out of my mind and didn’t expect to be selected as a donor.
Just one month later, in March 2021 I was contacted by my amazing donor coordinator Meghan, and I was officially notified that I had been selected as a donor! As if that wasn't enough of a surprise, the recipient needed my cells in just one month!
People undergoing bone marrow transplants have to receive pretty intense chemotherapy leading up to their transplant. Making the donation all on their timeline. It’s important that they have the cells by the date they are needed
I was definitely a little taken off guard since I wasn’t expecting to hear anything for several months. But knowing even just a small amount of information about the recipient made is easy to commit and gave me so much motivation throughout the proess. The recipient was of similar age and gender to myself which also made it easier to imagine how she might be feeling.
From that moment on, I was in almost constant contact with Meghan. She scheduled all of my appointments, dealt with any issues as they arose, and communicated with providers on my behalf.
In addition to scheduling medical appointments, the donor coordinators also schedule any travel and accommodations for the donor and one companion, all paid for by Be The Match. Since the collection date is pretty inflexible it may be necessary to travel depending upon availability in your area. I was sent to Dartmouth-Hitchcock hospital in New Hampshire.
I chose to take my dad with me because he is pretty awesome, and also because he actually has also gone through the same method of stem cell collection when he donated a kidney to a friend several years ago. Told you he was awesome! You can read a news article about my dad's donation here!
As I mentioned I was sent for blood work pretty soon after getting the initial call. It was pretty easy to do (but beware they take A LOT of blood!)
After I was selected as an official donor I was sent for a Medical exam and more lab work. Women are also required to take a blood test to rule out pregnancy shortly before donation as well.
In addition to all this, I did have to drive to a clinic in Indianapolis (about a 2 hour drive from me) to have my veins assessed to see if I could donate via IV's or if I would need a central line.Sspoiler: I did end up with a central line. I don't think that this is typical and Be The Match does pay for milage and meals if you are traveling for their appointments. They will even pay for a lyft if you do not have a vehicle.
After I was cleared medically, it was on the the filgrastim. Beginning 5 days before collection I had to start get filgrastim injections. Filgrastim increases your body's production of blood stem cells so that there are plenty in your body on donation day.
For me, these shots were the worst part of the whole thing. The injections themselves hurt really bad, but that pain goes away pretty quickly. Since the medication stimulates bone marrow production, it causes sore bones which is so hard to describe.
After the first day my hips and tailbone hurt pretty bad. By the last day I was pretty uncomfortable all over. Plus, I was traveling that day which amplified the discomfort. In addition to bone pain, the shots also made me pretty tired and I had some mild to moderate nausea.
On the first day, the injections were given at a doctor's office. After that Be The Match sent a nurse to my house which made things so convenient. The last injection was given at the hospital just before the donation.
For whatever reason getting the package with the injections and supplies at my house is when everything really hit me and became real. It definitely made me a little nervous but also really excited to finally be getting the actual donation process started.
Most people think of donating bone marrow as a very painful process that involves giant needed going into your bones. While some people do donate that way most of the time bone marrow is collected through apheresis, which is similar to dialysis.
Donors are hooked up to a machine that filters the stem cells and plasma away from the rest of the blood. Most of the time donors only need 2 heavy-duty IVs (like the kind used for blood donation) but my veins are not about being stuck so I had to get a central line.
If I am being completely honest, the central line was a little uncomfortable. However, I was able to freely move my arms which is a huge plus since collection can take anywhere from 3-6 hours. Mine was only 3. So I say it was a pretty even trade.
On donation day, I had to get to the hospital really early so they could place the central line. This is technically a surgical procedure but it's probably the easiest surgery you will ever have. It is completed under light anesthesia so you are sort of awake the entire time but also sort of not. I was pretty close to normal by the time they were taking me out of the operating room.
From there I went directly to the stem cell collection which was honestly a little anticlimactic. It was seriously the easiest part of the entire process. I had an amazing nurse who was fully dedicated to my care. My dad was also able to sit with me the entire time.
In addition to a nurse, a doctor came by and checked on me before I started to make sure I was healthy enough to donate. My hemoglobin was a little low which was a cause for some minor concern, but luckily they were able to continue with the collection.
During collection, you are free to eat, watch tv, read, or even take a nap. I was a bit queasy from the anesthesia so I just nibbled a bagel and listened to an audiobook. The time passed so quickly I couldn't believe when it was finished.
When my donation was over and my central line was removed, I actually felt really good. It was mostly just nice to finally be free from tubes and wires and to be able to walk around!
My dad and I spent some time driving around New Hampshire and Vermont, both of which were really pretty and neither state we had ever been to. I may have overdone it a touch because I crashed pretty hard that night!
The next day we traveled back home. Almost all of the pain I had experienced from the filgrastim was gone but I was pretty exhausted.
Since the donation, my donor coordinator has checked in with me to make sure that I am fully recovered and set up some follow-up labs for me to make sure that my hemoglobin is returning to normal.
It's been exactly one week since I donated and other than a small bruise from the IV and central line, I feel like I am completely back to myself.
Things I would change
There aren’t many things I wish were done differently but here are a few:
- Traveling - I wish I could have traveled to New Hampshire a few days earlier. I really can’t stress enough how awful it was flying across the country as uncomfortable as I was before my donation.
- Pre-screening - I wish upon 10,000 shooting stars that I could have seen my personal doctor for the prescreening lab work and physical. Be The Match sent me to an urgent care which I was less than impressed with. In addition, I just think my medical exam would have been better if it was done by a doctor that knows me. Plus it would keep my doctor in the loop on what was going on.
- Reimbursement for time off work - I am super lucky that as a full-time content creator I earn income even on my ‘days off'. But, I can imagine that this could be a huge barrier for other donors. I can’t say that I would have been able to donate if I was still working in my previous position.
- Donor and recipient communication - In the US donors and recipients are able to exchange one anonymous letter at the time of donation, then after a year, they can exchange contact info if they are both willing. My recipient lives in Switzerland where they only allow one anonymous letter to be exchanged. While it’s not a huge deal, it does feel really strange to have spent so much time thinking about someone I will never know.
Would I donate again?
I would, without any hesitation be willing to donate again. Any small amount of discomfort or inconvenience on my part is absolutely nothing compared to knowing that I have given someone hope.
I am 'on hold' for my recipient for the next year, meaning that I can't donate to anyone but them. After that I will automatically go back onto the registry until I am in my 60s!
One thing I didn’t realize before I signed up is that only 30% of people have a familial match who is able to donate. Unrelated donors are desperately needed. If you are eligible to donate, then you should really consider signing up for the registry.
I would hope that someone would be there to help myself or one of my loved ones, if they ever needed a stem cell donation. How can I hope for a stranger to do something that I am unwilling to do myself?
How to Sign Up for the Be The Match Registry
If you are between the ages of 18-40 I highly encourage you to consider signing up for the registry. They need everyone, but minorities are particularly needed.
I think a lot about what may have happened to my recipient if I had waited even another month or two to sign up.
You can find out more information or sign up for the registry yourself here and I am more than willing to answer any questions either through the comment section on this post or via email at firstname.lastname@example.org
No, they do not. They (or the recipients health insurance) do cover all expenses related to donating including any medical bills, medications, or any follow up care you may need. They also cover any travel related expenses including airfare, hotel accommodations, meals while you are traveling, lyft fare, and mileage on your personal vehicle for traveling to and from appointments. In addition to this they will also reimburse you for childcare and pet boarding.
Obviously each person is unique and will recover differently. I donated on a Monday, by Friday I was probably about 90% recovered with most of my issues related to being anemic. The only real symptom I still have is some bruising where my IV and central line were.
My dad, who has also donated peripheral blood stem cells, said that his only issue after donation was fatigue that resolved fairly quickly.
Bone marrow transplants are used to treat blood cancers such as leukemia and lymphoma, blood disorders such as aplastic anemia, immune system disorders, inherited metabolic diseases, and sickle cell disease just to name a few (my recipient had acute myeloid leukemia)
There are several guidelines on who can donate. Donors between 18 and 35 are preferred, but you ham can join the registry until age 40 (I am 38 fwiw) Many non communicable health conditions do not exclude you from being able to donate as long as they are well managed. For a full run-down check out this list from Be the Match.