A Donation Story: The Truth About Being a Bone Marrow Donor
And then I cried. The surgeon had just skillfully removed the arterial line that was placed in my femoral artery and the nurses thought I was crying because I was glad that it was out, but that wasn't the reason.
I cried because my bone marrow donation process was over and suddenly, I was completely overwhelmed, in a good way, by what had just happened. While my journey was complete, I knew that the journey for the young woman receiving my bone marrow was just beginning and I was flooded with both happy and sad feelings for her.
It's not often that bone marrow donors are able to really understand the process from both points of view- that of the donor and that of the transplant recipient. I was. I joined Be the Match in 2012 after my dad received a life-saving bone marrow transplant from a complete stranger. I wanted so badly to be able to pay it forward and give someone else the same gift that was given to my dad, but I never really thought that the call would actually come. You can't even imagine how shocked I was when I picked up the phone one day in March of 2017 and I was told I was a potential match and asked if I wanted to move forward. I didn't talk to my husband, I didn't call anyone in my family, I didn't even talk it over with my employer. My answer was "yes" and it felt like I couldn't get the word out of my mouth fast enough.
The day after I got the call about being a potential match, I went to the hospital for blood work to check if my DNA markers were the best possible match for a young woman with leukemia. I had to wait just over a month for the answer and was ecstatic when I was told that I was in fact, the primary match for the patient.
From there, I visited a cancer hospital where they did a full physical to make sure that I was healthy enough to donate. While the focus is on saving the life of the recipient, it's also important to make sure that the donor isn't being put at risk. In addition to the physical, I had another round of blood work, this batch even more intensive. A panel of doctors, including the patient's, had to look at everything from my white and red blood cell counts, platelet count, potassium, calcium, thyroid function, liver enzymes, and more. All of them were in agreement that everything looked great and there was no reason I couldn't move forward with donating my bone marrow.
I was given chance after chance to back out of the donation process, but in my mind, there wasn't ever an option for me not to move forward. I was and am still convinced that there's a reason I was matched and it quickly became my mission to do what I could to give hope to a very sick woman.
When most people think of donating bone marrow, they think of what we've all seen in the movies- a patient writhing in horrific pain, wide awake, as a doctor holds them down and drills into their bone to extract the marrow. In real life, that's not how it works. Yes, some people still donate through actual bone marrow donation, but they're given anesthesia and feel no pain during the donation process. This isn't to say it's a total walk in the park because most donors feel back and hip pain and in some cases, muscle pain for a couple of days following the donation, but for the majority of donors, the pain can be controlled by Tylenol.
The vast majority of people who donate bone marrow do it through a process called peripheral blood stem cell (PBSC) donation, which is how I donated. Pretty cool fact- the same blood-forming cells that are found in your bone marrow are also found in your blood stem cells and the process of extracting the bone marrow-carrying cells is called "apheresis." For five days before the donation, donors are given injections of a medicine called "filgrastim." Filgrastim helps increase the number of blood stem cells in your bloodstream, which are then filtered out on the day of the donation.
For most people, on the day of their stem cell bone marrow donation, a needle is put in each arm, and blood is removed through a needle in one arm, passed through a machine that collects the needed stem cells, and the rest of the blood goes back into the body through the needle in the other arm. Most donors complete their stem cell donation in one session which can take up to 8 hours, but there are others who need to have two sessions over the course of two days at 4 to 6 hours each session.
My veins were assessed during my physical at the cancer hospital to see if they were strong enough to hold a large gauge needle without collapsing. They weren't. This doesn't mean that I have bad veins, it just means that they're on the small side and because the process uses larger-sized needles, doctors needed to find a bigger vein from which to pull my stem cells. And so, they had to place an arterial line in my femoral artery. If you're not sure where the femoral artery is located, it's the main artery in each of your legs and sits on either side of your groin where the crease of your leg is.
I won't tell you that I enjoyed having an arterial line placed in my femoral artery because I didn't, but each patient is different. Some people don't feel any discomfort at all while others do. The good thing is that the line is placed in a controlled and sterile environment, done by surgeons, and local anesthesia is used. Just as some people don't feel discomfort with the femoral artery line, some don't feel any side effects from the filgrastim injections, and others do. I was one of the ones who felt a couple of the side effects, including bone and muscle aches and exhaustion. I was so tired. But my side effects weren't anything that rendered me completely useless.
Because of strict medical privacy laws, I can't tell you the date that the young woman received my stem cells, but I can tell you that I cried again when I was told that my bone marrow had been transplanted into her body. The reason I cried is that almost all patients refer to their transplant day as 'Day Zero,' or their "Second Birthday." The day their life starts all over again. Let that sink in for a second.
It's now been five years since I donated my bone marrow and I wish that I could tell you that "my girl" is alive and well and that her life is free of cancer, but I'm not able to. Shortly after I made my donation, Be The Match changed their recipient update policy and the last correspondence I had with them was on March 16, 2018. It was then that I was informed that they would not be able to request an update on the patient due to the new privacy laws. I felt like I was going to throw up. I felt like someone yanked my heart from my chest and trampled on it. I felt like any chance I had of knowing whether or not my girl survived was snuffed out. The truth is, unless a divine intervention takes place, I will probably never know what happened.
Am I upset that I don't know the status of the person who received my bone marrow? Not now, but I was for a while. I'm not bitter and I have no ill will. I am, however, sad. I walked into my bone marrow donation process knowing that I may never know the name of my recipient or ever have any sort of a relationship with her, but I suppose I set my hopes a bit too high because I wasn't remotely prepared to not even get a "yes" or "no" answer whether or not she is alive.
There isn't a single day that I don't think of my girl and wonder how she is. I pray for her. I hope for her. I write notes to her and have bought gifts for her. I don't know if I'll ever get to know the woman who is not my child but shares my DNA, but she will forever be a part of my story and my life. Be The Match sent me a beautiful picture frame as a thank you with the date of my donation engraved into it. I'm never going to give up hope that one day I'll be able to put a photo of me and my girl in it.
Even though I struggle with the sadness of not knowing, if given the chance to go through this process and give this gift again, a literal gift of life, I would jump all over it. I'm still completely in awe that I was granted the chance to pay it forward. You might not be aware of just how many people desperately need a bone marrow transplant. According to Be the Match:
Every three minutes, one person is diagnosed with a blood cancer. Every 10 minutes, someone dies from a blood cancer. That’s more than six people each hour, or 148 people each day.“
Let that sink in. 148 people die each day from blood cancer. Many of these people die because there’s no life-saving bone marrow for them and that’s because people either aren’t informed enough about the need, or they haven’t joined the National Marrow Donor Program. So, what are you waiting for? You never know, you could end up saving a life one day.