Kelly the Culinarian: My Bone Marrow Donation Story

Friday, March 11, 2016

My Bone Marrow Donation Story

You have two important dates in life. The day you're born, and the day you find out why. March 9 will forever be the date I found my purpose as a bone marrow donor.

Right now, a liter and a half of my bone marrow is surging through the veins of another person, killing cancer-causing cells. If it wins, the recipient will be cured of cancer in 22 days, have my blood type and all my immunity, and maybe an interest in craft beer and distance running. Not sure on the last one, I'm not a doctor, but these are my personal thoughts on what it was like to donate bone marrow.

I've been on the National Bone Marrow Registry for about 10 years. I joined when I was working as a reporter and wrote multiple stories about an infant who was born with leukemia. Because she was biracial, they said she would have a hard time finding a donor when the time came. I've never been called. I donated to a relative, so this happened outside the registry. It started with blood tests in October, then again in January. Much like all medical procedures, it's hurry up and wait. When you get the testing kit in the mail, you have to complete it within a week and it gets over nighted back to the hospital. Then you hear nothing for weeks. It's the nature of the beast.

At the end of January, I learned I was a match and was asked to travel to Baltimore in February for extensive testing. The patient was at Johns Hopkins, which is where most of my shenanigans took place. My initial screening included an EKG, chest X-rays, LOTS of blood work and a comprehensive physical. I happened to be sick the day I went for my screening, which meant I needed more blood work, a nasal swab and throat culture, and then another set of blood work a week later to ensure I was feeling better.

Yeah, all that blood is mine

Then, wait again. The procedure was initially scheduled for two weeks after my screening, but the recipient had a virus and it was pushed off for another two weeks. In the meantime, I had to get more X-rays at home because of my broken rib drama. They had to be sure it was a healing rib and not something in my lungs. All the bloodwork came back great. Turns out all that running really does make you damn healthy.

Surgical prep
With all systems go, it was a matter of logistics. I flew to Baltimore to have a day of pre-operative screenings and meetings where they make sure nothing has changed. I checked into a facility next to the hospital that was basically a very sterile dorm room with quick access to the facility if anything happened. The night before and the morning of the procedure, I had to use these medicated wipes to wipe myself down and kill anything that could cause infection. I couldn't eat or drink or even have a breath mint after midnight the night before, and I couldn't shower either.

So there are two types of donations. One is basically like donating plasma, where they removing the marrow from your blood. My marrow was extracted through surgical means from the back of my pelvis. This requires a series of small incisions, and then using a needle to extract the marrow multiple times through the same cuts. I chose to do this under general anesthesia, but there is an option to use local anesthesia and a sedative. Not to sound dramatic, but I never wanted the sounds or feeling of that to ever enter my brain. I regret nothing.
Waiting is the hardest part

The most painful part of the entire day was getting the IV in the back of my hand, then getting the first dose of propofol via that IV. After I was asleep, I got another IV in the other hand for emergencies, and that felt none too pleasant later on, either.

I was the first procedure of the day and it took took about three hours. I woke up in a recovery room feeling uncomfortable but not in pain. My butt was sore and my throat hurt from having a breathing tube. I immediately asked for water and if it was successful. They extracted 1400 CCs of marrow from me, or about one and a half IV bags. That all went to a lab where they spun off my red blood cells and filtered out any bone matter. I'm a different RH factor than the recipient, so they wanted to remove what they could that he would react to.

My procedure began at 7:30 a.m., the recipient started to receive my marrow via transfusion at 1 p.m., and I was discharged just after 3 p.m. It took so long because they had to replace the fluids that I lost via IV. I had to be able to sit up, then stand, as well as eat. I wasn't very hungry and it took hours before I felt like I had to pee (I was very dehydrated). I had to get help to walk to the bathroom, and when it was time to leave, I needed help getting dressed and a wheelchair to get discharged. I saw the recipient getting the last of my marrow before I went back to my room.
The end result - the cure. I made dis!

I was ridiculously pale and weak that afternoon. My mom came by the apartment to see me in the evening and was scared how pale I was. I also had to force myself to eat, and found myself shaking pretty aggressively as I came down off all the drugs. In this whole process, I've never been in pain, and only took one dose of pain meds when I was in the hospital. I'm managing fine on tylenol alone.

In terms of what this looks like, when I left the hospital, they bandaged me up pretty extensively and I couldn't see what I was dealing with. It looked liked I had two magic erasers taped to my love handles. The day after, I went back to the hospital to have it removed and cleaned and inspected. It looks a bit like a series of bee stings. I flew home last night and needed a wheelchair at the airport because I get sick to my stomach if I stand for too long.

Today, two days post op, I feel tired but fine. Taking my first shower this morning since Tuesday night zapped me of all my energy, and I'm realizing my townhouse has a daunting number of stairs. I'll be working from home for a few days until the idea of walking from my desk to the coffee pot doesn't sound insurmountable.

However, the inconvenience of this all is a very small sacrifice. If this is the treatment, thank god I don't have the disease. In the next month, a battle will rage on the cellular level within the recipient. If my bone marrow wins, he will go home in 60 days for the first time in eight months. They call the day of the transplant your second birthday because the recipient basically starts life again. And I would easily, in a heart beat, do this all over again to give these kids their dad back.

If you have questions about being a bone marrow donor, e-mail me. 10/10, would do again. I'll write about this again, so please let me know what questions you guys have.


Diana @ VeggieNextDoor said...

Congratulations Kelly! That is amazing. Wishing you a speedy recovery!

I have been on a registry for several years. I hope more people sign up after reading this!

Its pretty unfortunate though that medical insurance doesn't covet a hospital stay for a donor as well. Sounds like it wasn't necessary, but I am sure would have been much more restful!

KellytheCulinarian said...

The donor's insurance is supposed to cover everything. The hospital "gifted" me three nights stay at their equivalent of a Ronald McDonald home. After that, I would've had to pay for it at a rate of $60 a night, but I'd really rather be home!

notquitesure said...

I think that what you did was incredible and selfless. You're an inspiration to those who are lucky enough to know you.

Unknown said...

Did everyone in the family get tested to see if they were a match?

Even after you wrote about the "aftermath" for you I would do this in a heartbeat if necessary. I've also been on the "Be The Match" registry for over 10 years but never gotten called. I hope that if a family member needed bone marrow, though, that I could help.

I'll keep my fingers crossed for the recipient!

KellytheCulinarian said...

My dad is a perfect match, but too close to the upper age cut off to be considered. My sisters and I are basically all 50/50 matches, but I had some advantages as a donor that tipped the scales in my favor.

I was truly expecting this to be a lot worse than it is. If I don't try to do too much, I feel fine. Maybe it's a testament to all the running? I'm used to being sore and tired and kind of dehydrated. I ran 20 miles right before I went under the knife, so I can stand to lounge around for a week.

Anne said...

Kelly, this is so very awesome. You know, there are a lot of people that won't even donate blood - look at you having surgery to help someone out! What an amazing gift you could give to your family. I hope you have a quick recovery!

Amanda said...

So very wonderful Kelly! Brought tears to my eyes!

erin said...

So amazing and selfless, Kelly! What a gift you just gave. <3

. said...

I think it's amazing you were able to participate in the gift of life to another person! What a awesome journey. I hope your feeling better!
Many blessings to you

emily said...

Incredible, Kelly!

Unknown said...

I am a bmt recipient, I had mine in April 2017. My donor is from Germany and we have exchanged letters once already.
Be The Match was the .org that found my match. I’ve read that many doners feel a little anxious when they get “the call”, for me,
then I got “the call”, my thoughts were “ I’m going to live”.
Both family’s go through a lot during the transplant process, and thanks to all who said, say yes when the time comes.