Here's what it's really like to donate a liter of bone marrow
- barrabuilt
- 13 minutes ago
- 11 min read
A first hand look at what a bone marrow transplant is like from the donor's perspective
There was never a question if I was going to donate bone marrow for Ray. The answer was always yes, no matter what the process entailed. I understand doctors are doing their best to encourage people to donate while sharing details of the process, but I was certainly caught off guard with how challenging the donation day was.
I expected back pain and soreness, as they take the bone marrow fluid out of your iliac crests in your back/hip bones. I wasn’t scared of that part- I was in labor with Leo for 44 hours, so I am basically super human in regards to pain. What I did not expect was how your body reacts to having a liter of bone marrow and blood taken out of you. Let’s back it up and I will explain the process from the start. I will do my best to write as eloquently as Ray does explaining the medical pieces.
How the donor process works
Since we went through the process of testing me as a donor back in 2016, we already knew I was a half match for Ray. Science has come such a long way in the last 10 years, and as Ray explained in her last post, half matches are very common now, with Johns Hopkins leading the way in research.
When JH recommended Ray needed a BMT back in November, we went through a typing process again to confirm I was still a match and see if anything changed. A donor is selected based on their human leukocyte antigens, which are proteins, or markers, on the cells in your body. I have a 5/10 match for Ray, but since we are related, I was still considered the best option over higher matched un-related donors tested from the registry. They sent me a kit in the mail and I was able to get it done at a local Labcorp. We received news late December that Ray and I both needed to visit JH for additional testing for antibodies. You can gain antibodies from many things including when you have a virus, get blood transfusions, pregnancy, vaccines, or other environmental exposure. Ray had some antibodies against me and we needed to determine the level of the antibodies in order to proceed. The way it was explained to me is that some small level is expected, a medium level would require different pre-transplant conditioning, and a high level would mean I am no longer an eligible donor for her.
Thankfully, we landed in the low levels and I received news on 1/8 (Ray’s birthday) mid-flight to a girl’s trip, that I was selected as the donor, with the transplant date of 3/3. Safe to say my plane neighbor probably was confused by my sudden tears. The tears were not of fear but more of a rush of emotions that this was actually happening after so many years.
Preparation
What can you do to prepare to be a bone marrow donor? A common Google and AI chat search for me the last few months. The advice I received from the doctors and internet was basic: stay healthy. Try to avoid getting sick, eat well, don’t drink (alcohol is a bone marrow suppressant), sleep well, continue to move your body, etc. Sounds easy… unless you have a toddler in daycare.
Safe to say I was VERY paranoid about getting sick for the last two months. There were things I could control such as avoiding social events, skipping Leo’s swim classes (don’t want to know what is in that pool), laying low at home, being extra careful at the gym or other crowded places. I simply could not control the daycare aspect. We had a horrendous winter of illness last year for Leo and I was so nervous he would bring something home in the weeks leading up to the transplant. Somehow, Leo and his daycare buddies understood the assignment!! Minus a lice scare, we did not have any illness in the months leading up to the transplant. That said, I was still nervous up until the night before I was going to do something to screw this whole thing up. This was all self-inflicted pressure. Ray, the doctors, everyone else was so positive and supportive the whole way.
Peripheral stem cell collection vs. bone marrow harvest
Quick side step to explain the different types of donation. There are two ways to collect stem cells to be used in a bone marrow transplant. The good news is that 90% of all donations are via peripheral stem cell collection. This is a process where the donor has to give themselves shots of medicine 5 days prior to collection to stimulate stem cell production. On collection day, the donor is connected to a cell separator machine and the process is similar to giving blood. The machine takes the blood out, separates the stem cells, and returns all other blood cells back to the donor. The whole thing takes a few hours and the donor is back to normal the next day.
The bone marrow harvest, which I did, is a surgical procedure in which the donor goes under general anesthesia and the stem cells are collected directly from the iliac crest. This is where the largest amount of stem cells are located in the body. This process is preferred for Aplastic Anemia specifically, which is why we went this route. The donor is positioned on their stomach and a huge needle is stuck into the donor’s hips, all the way to the donor’s pelvic bone to draw the marrow out of the bone. While the donor only will have 1-2 “holes” on each side from the needle on the surface, the doctors will puncture the bone 50-100 times on each side to get a liter or more of bone marrow. The incredible thing about Johns Hopkins is that mid-way through the procedure, they were able to take what had been collected to the lab, start to filter it and determine exactly how much would be needed based on the density of my stem cells and Ray’s height/weight.
Almost game day
Griff, Leo, and I flew out to Baltimore on March 1. We brought the whole village with us too including Griff’s parents, Christine & Gino. We could not have done this without them. They were incredible and immediately offered to come help with Leo during this week, no questions asked, and booked flights booked before we even had ours. Forever grateful for their love and support of not just me, but my whole family.
The day before the harvest, I had a few appointments and brought my emotional support Griff with me. They checked out all of my labs, made sure nothing had changed since I was there last in early February. We had a chat with the NP who would be in the operating room and got the rundown on the next day. One piece of information that was not shared with me until this appointment was that you were supposed to remove your nail polish. Apparently, that is how they monitor your blood oxygen levels during the surgery. This would have been very helpful information to have before I left home as I have a gel overlay manicure on which is nearly impossible to get off without going to the salon. Had to take a panic run to Target and did my best to soak off one single finger for them to use. Spoiler alert: they didn’t even use that finger for the monitor. See below.
The night before the procedure there were very specific rules to follow: no eating or drinking anything after midnight, no medications, shower the night before, and use 2% Chlorhexidine Gluconate wipes to reduce infection risk.
Non-doctor prescribed pre-procedure rituals: face masks, tea, and matching PJ set. Ray and I have done this when together and apart for the last few months and it has only brought good vibes.
Bone marrow harvest day
4:15 AM alarm came quickly. We had a 5:30AM arrival time and had to ensure we had time for another round of pre-surgery wipes. I tried my best to channel Rayray’s hospital swag with a matching sweat suit set:
I was nervous, but at this point it was full steam ahead and I wanted to get my part over with so we can focus on Ray getting better. I have never been under general anesthesia before and they make you sign your life away before getting wheeled back, which does not help the nerves. Right on time, I was wheeled back at 7:30AM with some anti-anxiety meds. I barely saw the room before I had an oxygen mask on and was taking deep breaths. I was out in moments.
The procedure took longer than expected. They estimated I would be done around 10:30AM, but I wasn’t out until after 12PM. The first thing I remember when coming to was being violently cold: shaking, teeth chattering freezing. They kept asking how I felt and all I could get out was “cold cold cold.” Funny enough, they put this machine on me called a Bair Hugger, which Griff and I had just looked up that morning, wondering what it was. That Bair Hug was amazing. Basically a massive heated sleeping bag they put over you.
When I finally was in more control of my body, I noticed I had a second IV in my other hand. I guess I was losing so much fluid during the procedure they needed IVs in both hands to pump me with fluids. They gave me 4 bags of fluid during the procedure and I got another 2-3 once I was in recovery. I felt like Violet from Charlie and the Chocolate Factory complete with sausages for fingers. My arms were so swollen I felt pain when they gave me nausea meds through my IV because there was so much pressure in my wrists. I was so blown up that an uninvited pimple that was on my forehead upon arrival that morning was GONE by the afternoon haha who knew that could even happen?! Did it just stretched out and get flushed away?? Follow me for more beauty tips.
While some of this was quite humorous, the scary part was the low blood pressure and low hemoglobin. The craziest part is that is the norm for Ray these days. I had such low blood pressure from the amount of blood and bone marrow they took from me I almost had to stay the night at the hospital. I tried to get up to go to the bathroom multiple times, but was unsuccessful (a requirement to leave). After a few tries I finally walked the 10 feet to the bathroom only to get wheeled back in a wheelchair because I was seeing black and about to pass out.
More fluids, more resting, more nausea meds, more saltines & ginger ale in recovery. As Ray mentioned in her post, she was able to come visit me in the PACU following her transplant to hang out for a while. All the nurses were amazed. They had never had the recipient come visit the donor. Usually the recipient is too sick or the donor is out first. I think the worst part was how worried Ray was for me. Adding more stress or worry for Ray was the last thing I wanted.
With little improvement for my BP with fluids and time, the nurses began to discuss other measures: a red blood cell transfusion or a blood pressure medication. We decided to go with the BP meds, which was essentially a sibling of the epi-pen delivered into my leg via needle. Thankfully, these meds did improve the BP situation, but I still was not very mobile without getting very dizzy. After being in recovery for over 7 hours, the nurses were asking if I was comfortable to be released or if I wanted to stay the night for additional observation. My main concern about going home was not the pain but being worried I would not be able to get up the stairs to the second floor of our Airbnb, since there were no bathrooms on the main floor (classic Baltimore row house issue!). I decided if I could walk a lap around the PACU without needing the wheelchair, I would feel more confident going home with the help of Griff to get up the stairs without passing out. Around 7:30PM, I was able to make the lap slowly and decided to be discharged and rest back at “home.”
Home sweet home
Going “home” was the right decision. I was able to get back and give Leo a hug before bed and made it upstairs at the Airbnb with a lot of help from Griff. He has been my HERO. Lifting me fully out of bed to get to the bathroom the first 24 hours, taking care of everything related to Leo, and managing all of the family communications, which is a full time job in itself.
By the next afternoon, I had drastically improved. While sore, I was moving much better, BP had improved, and I was able to eat some full meals. We went back to the hospital for the docs to remove the pressure dressing on my back. It is truly incredible that all of the fluid was removed from just 3 holes in my back:
They were healing nicely when she removed the dressing and I was approved to fly home the next day. Pretty crazy how the holes looked so minuscule the day after the surgery. The bruising has deepened over the last few days, but I promise it looks worse than it feels!
Griff, Leo, and I were able to make it home safely to Chicago. We even sat next to a JH biology professor on the plane. One more plug for what an incredible partner Griff is: it is not easy flying with a toddler in the first place, and Griff handled absolutely everything as I was wheeled through the airport. He was a pack mule carrying a ton of bags and basically solo parented the flight as I was pretty useless.
Recovery rules
I’ve received a lot of questions about what the recovery is like. The pain has gone down but certainly feeling the low hemoglobin and blood pressure, feeling light headed and out of breath after climbing the stairs. That has been the hardest part, and one I did not expect. I have mad respect for Ray dealing with this over the last year because it is not easy to function!
No heavy lifting for a week or two, which included Leo for a few days. As a personal trainer, the word “heavy” is relative. I take that as no picking up Leo until I am no longer light headed and then easing back into lifting/exercising. I probably won’t be deadlifting 200lbs anytime soon. We took some strolls around the neighborhood and I am already moving much better. I feel like I am doing the pregnant waddle down the street from the back soreness.
I have added in an iron supplement, which is supposed to help with the regeneration of blood cells over the next 4-6 weeks. I am cleared to go back to whatever activity once I am feeling better, but could take about a month to have full energy back. Lots of rest this week and planning to go back to work next week since I work from home.
In conclusion, I’d give another liter tomorrow if Ray needed
I don’t share these details to scare anyone off from donating. I just want to provide an accurate picture of my experience because in my book, the more info the better. Something Griff and I discussed this past week was if we would do this for a stranger. My answer is 1000% I would do this again for Ray or someone else. Understanding first hand what the gift of donating bone marrow can give someone makes the donor experience small potatoes in the scheme of things. While we are back home in Chicago, I left part of my heart (and literal DNA/blood) back in Baltimore with Ray. It is hard to be away from the family as Ray gears up for the difficult part, but I am happy my piece is done so we can focus on Ray’s healing journey.