We’re coming up on the one month mark of my blood stem cell donation and I’m still shocked about the reality that was my donation versus the MASSIVE misconceptions that exist about these type of donations. Before we get into my donation experience, if you missed my first post on this journey…you’ll want to check it out here! I walk you through how I got to the point of registering, and more importantly how YOU can register.
Today, however, we’re here to talk about what happens after you register.
WAITING
I registered in January 2019 and was matched as a donor in March 2020, and every single medical person I met on this journey had the exact same shocked reaction that I matched that quickly. It’s uncommon to match and definitely uncommon to match so quickly (which is exactly why we need anyone and everyone that’s willing and eligible to get on the registry!) I met some people that have been on the registry for 5+ years and others that had even “aged out” of the registry (they were on it until they turned 60 and are automatically considered ineligible). My point here is that once you register, you may never get the call, BUT you should register with the spirit that if you do match you will do everything in your power to go through with it.
DOES IT HURT?
Just call me a myth buster, because I’m here to tell you that the most common type of donation (blood stem cell) is less painful than donating blood. Yes, you read that right. The most uncomfortable part of the donation for me, was sitting still for 8 hours while I binged watched Outer Banks on Netflix. There was discomfort that took getting used to with the steroid shots** I had to take in the days leading up to the donation, but I was able to manage that with a little extra rest and Tylenol. If you’re matched for a bone marrow donation (which I originally was, but our plan changed for a variety of reasons decided on by the patient’s team of doctors), you will have a little bit more of an uncomfortable experience. That donation includes general anesthesia during the procedure, so no pain there, but definitely anticipate some discomfort on the two-ish weeks in recovery. I can’t speak to that recovery process personally, but I was educated in detail on it because that was our original plan, and I have to say I was confident that if I could birth a baby, walk myself out of the hospital in my adult diaper in the days following and recover within 6 weeks… two weeks of aches and pains should be manageable for the sake of saving a life.
**What in the world are these steroid shot things?! In the 4 days leading up to the donation and on the day of the donation, I received two injections of Filgrastim, one in the back of each arm. These injections kicked my bone marrow into high gear, so it would release more stem cells into my blood.
WHERE DID YOU DONATE AT?
When we were planning for the marrow donation, I had to travel from Del Rio to Houston for a physical, because that is where the donation was going to take place. When we switched gears to the plasma donation, I was able to do that in San Antonio. The cool thing is, there are centers all over the country and your case manager will do their very best to limit your travel as much as possible.
OK, TELL ME MORE ABOUT THE ACTUAL DONATION
Alright, alright, alright. From the top…I showed up to the donation center around 7:30am, I received my final round of steroid shots (see above if you’re curious about these and skipped over some reading) and got hooked up to the machine. They had me hooked up so that the blood would come from my left arm, into the machine to be separated and then the leftover was warmed and sent over to my right arm hookup and back into my body. Occasionally, the machine would beep and I would have to squeeze a pressure ball, but for the most part my job was to eat the delicious food the staff went out to get for me and binge watch Netflix, sleep, text, etc. The most exhausting part of the experience was sitting still for 8ish hours. I did have a few standing breaks, when the nurses would unhook me from the machine and I would use the restroom. Normally (outside of CV-19), my family/support system would’ve been allowed back in the donation area with me to hang out, but that wasn’t permitted because of the circumstances. I finished all by three episodes of season one of Outer Banks, chatted with the incredible nursing staff and took a little cat nap. By 4pm by husband, sister and daughter came to pick me up, I walked myself out of the clinic, went back to the hotel, took a 45 minute nap and was back to 110% by the following morning.
WHAT HAPPENS AFTER THE DONATION?
The case manager/nurse I communicated with throughout the process calls for periodic check-ins to see how I’m feeling, I sent in the receipts I collected along the way for food and other expenses, and just continued on with my life…business as usual!
DO YOU KNOW THE PATIENT?
I don’t. I have a few details about the patient but will not be able to know more/contact them until one year after the donation. This is for a variety of reasons, but the predominant one is to protect their privacy and healing journey. They have a very tough journey post transplant, so it’s important they have space to focus on that. At the one-year mark, either party can opt to contact each other and Be The Match will start opening those lines of communication. Until then, I get small updates, like my case manager calling me and letting me know the transplant was successful (PRAISE GOD), but nothing more. So, in the meantime…I’m just praying praying praying for continued health for the patient and looking forward to contacting them when I can.
WHEW. That was a lot and I hope it was informative. More than anything, I wanted to raise awareness at how straightforward and simple this donation can be from the donor side of things. I hate needles. I hate getting my blood drawn. Donating blood terrifies me. And even I was able to go through with it (without losing consciousness). I hope this inspires you and gives you the confidence to register with the plan to donate and save a life. The registry desperately needs diversity and the more people that sign up the better the odds are for patients that they will match and LIVE to tell the incredible story and shared bond they will have with y-o-u!
