Posts made in March, 2018

Today I got to do the coolest thing ever

Posted on Mar 27, 2018 in General | 0 comments

SAVE A LIFE! And it was easy. I’m so unbelievably honored to have been given the opportunity. Where does life even go after something like this? I kid… Enough emo. Let me tell you all about it!

Step 1 – The Call

A few months ago I received a call that felt like a scam. First, it was from Florida. I don’t know anyone who would call me from Florida (that’s right, Jamie, you wouldn’t call me). Second, they mentioned an event I had no recollection of. Third, the offer was too good to be true.

The first part? Nope, nobody I knew from Florida.

The second? After some deep digging, I recalled that in May 2010, one of those insurance people
came into work to explain our benefits. He, or someone close to him (I can’t remember) had had leukemia, received a bone marrow donation, and lived happily ever after. Would we like to swab our cheeks to get in the database? Having witnessed a “niece” battle (and beat) leukemia right around that time, it was a no brainer.

The third? The chance to save a life for so little effort. I’d be inconvenienced a few days, maybe feel crappy a few more, but SAVE A LIFE. I wouldn’t have to stop a bullet, run in front of a speeding train, or anything truly heroic. Having lost Mom to cancer, Rebecca’s Dad (day after my donation – he was terminal at the time) to it, and knowing too many others who have beaten its ass, it was an opportunity I couldn’t pass up.

On this call I found out the recipient was a 37 year old female with acute leukemia (I don’t know the subtype). That’s all I may ever know.

Step 2 – The Wait

Someone looking for a match can have several matches. You’re not informed how many they may have, but further bloodwork must be done in order to find the best one. I had this done at a clinic near home and waited. During this time (it was a month) I scoured the internet for all the information I could find. Conclusion? The chances of donating at this point were still pretty slim [ref.]:

  • To start, only 1 in 40 on the registry ever receive a call
  • After receiving a call and doing more bloodwork, only 1 in 7.5 are determined to be the best match
  • After being determined to be the best match, only 2 in 3 actually donate

A podcast [linked below] provided a great metaphor on the likelihoods of all of this. Think of the recipient as a golf ball in flight. For them, the chance of landing in play is good, and that is akin to finding a match. The donor? They’re a blade of grass. The chance of that golf ball landing on them specifically? Ridiculously small.

Step 3 – The Physical

Once I was determined to be the best match, a date was set for the donation – three weeks out. Two weeks prior, I’d have to go to the donation site for a physical and more bloodwork. Since my safety is in their hands, the previous bloodwork combined with the physical I had received on my own just a few weeks before would not suffice. Conveniently, the donation site was in Annandale, VA, where all my college pals still live, and an area I’m very familiar with since Dad worked basically next-door to the place for near thirty years.

The physical was a simple physical plus blood draw and paperwork. In and out in less than two hours. The back and forth across the country in less than a full day was less than ideal, but I survived.

Step 4 – The Shots

The shots last for five days, but let’s back up a few days. Roughly (depending on when the transplant is) three days before my shots, the recipient undergoes what I believe is the most intense chemo and/or radiation possible. The goal of it is to basically kill her and allow “me” to grow inside her without any defense. While we have matching “defense” proteins (and I think really close DNA? Haven’t verified that), the body still recognizes foreign matter and wants to fight it so they destroy her immune system. If for any reason I wasn’t able to donate, she would die. Wild. Friend, if you’ve been wondering why I’ve not been on sunny day group rides, now you know.

My shots are of a drug called filgrastim. It’s most often used to boost the immune systems of folks following chemo, suffering from HIV/AIDS, or to give people donating stem cells super powers. It tells your body “Hey, we’re at war! Mount up!” My limited understanding means this tells your bone marrow to create the heck out of white blood cells and stem cells. It does so to a point that they actually leak out of your bones and into your bloodstream.

I had my first shot at an urgent care, the second from a home nurse, and the final three at the clinic in VA. On day one I could tell something was a little odd, but nothing acute. By day three I had some very light throbbing in my chest, lower back, tightness in my hips, and the most mild headache imaginable. I didn’t need Advil, but they recommended staying ahead of any possible pain so I took it anyway. By day four the symptoms were mostly gone and day five they were even less. One of the five shots burned for 30 seconds in each arm, but it’s unclear why.

There were some lifestyle restrictions while drugged up, but they weren’t too bad:

  • No strenuous activity. I continued with my daily no-sweat riding, but the drug made it clear I didn’t need to do more than 20-30 minutes a day so I got some walking in.
  • No alcohol. The day I found out I was doing this I tried to live life as cleanly as possible and cut it out completely. Not a problem.
  • Be safe. I had to miss a couple of amazing team/group rides and some races I would have liked to have done, but a small price to pay. A couple of them had garbage weather anyway so having a badass excuse to not go do something terrible was a-ok.

Step 5 – The Donation

No coffee that morning. Probably the hardest part of donating. Ugh.

30ish minutes following my fifth shot, it was time to hook in. An outlet went into my left arm and a return in my right wrist. In between is a centrifuge. The process is called apheresis and is the same as you’d experience if you were donating platelets, plasma, or a number of other things that can be separated out of your blood. While being fit has the advantage of making my veins incredibly easy to hit, it also means there’s no fat in which to smooth them out; they turn at hard angles that the needle had trouble coping with. We’d have to proceed at low speed until they were able to get my body temp up, which resulted in my veins relaxing.

From there, it was about 3.5 hours of laying in bed and farting around on my iPad. I got a bit restless, but I think that was mostly because I had to pee and knew that was an ordeal so I held it for two hours (they urged me to not drink anything morning of… I thought they only meant before and not during).

And then it was done. Unhooked, bandage up, received discharge instructions, and then I was released to a pretty normal day. Ate well, got some exercise in, and as I write this I can tell the drug is still working its magic, but I feel close to normal and am eager to get back to 100% in the next two days.

Step 6 – The Contact?

The information I mentioned above regarding my recipient is all you’re given for a year (anonymity is required for the first year to protect both parties as future donations may be needed) or possibly ever (some countries never allow contact and even if they do, both parties must opt-in). Yes, I would very much like to get in touch with or meet my recipient.

Regardless of laws or desires, I will receive a 1-month, 3-month, 6-month, and 1-year update on my recipient’s well-being. I think they might go yearly after that.

You probably have some questions. Good, I have some more things to say AND have a few answers.

  • Dad came up the day before donation. Was great to have him here and get to spend time we otherwise wouldn’t have had together.
  • I got to see SO MANY friends’ kids. Such a great time.
  • A lot of recipients call their transplant day their second birthday since they’re effectively brought back from the dead.
  • Data on transplant success is all over the place and dependent on more specific information I don’t have, but figure 50-70% survival after one year, and 40-65% after three years. Kind of disheartening, but way better than it used to be.
  • Everything was paid for and handled for me. Last minute flights, food, transportation, hotel. I would assume the recipient’s insurance paid for it.
  • Everyone I’ve spoken to has been scared of the donation process. We all grew up hearing about drilling into your hip bone. Fake news. They only drill into hips 10% of the time anymore. Everything else is PBSC (glorified blood draw that I went through).
  • 250 million stem cells were extracted. That’s apparently a low number and is the product of my recipient not weighing much.
  • Only the recipient’s blood and bone marrow are rebuilt from my code. That means she will receive any allergies I have (none), and probably get my flu shot for free, but nothing else will change.
  • Overall, the process was not at all painful. Uncomfortable at times? Sure, but .5 out of 10 on the pain scale.
  • My white blood cell count was “28” (I don’t know the unit of measure). Normal is 4-11. Someone with leukemia might be at several hundreds.
  • There are no known adverse effects from the process, but there isn’t much data beyond five years. The science in me says the risk would be an increased likelihood of cancer, but I’d imagine if no mutations were found after five years, they’re not going to happen. I was comfortable with this, but it’s probably the biggest hanging point. I’ll also participate in any long term study if they ask (I think they will).

Shoutouts and Links

  • Gift of Life is a great organization. Everyone I had the chance to interface was great. Loretta, Ana, Hildy, and Sarah, THANK YOU FOR MAKING THIS SO EFFORTLESS AND SAVING LIVES EVERY DAY. I also got a sweet pin and hand-signed blanket from the staff.
  • AANOVA Apheresis is great people. Added bonus was a good friend’s mom worked there for decades so I’d like to think I got more of the family treatment. I’ve been told they’re likely the best place to donate since they’re able to get lab results so quickly (this gets you out the door faster).
  • Reddit has a really good AMA from three donors if you’re more curious about the process.
  • Radiolab has a good podcast on the subject. It gets a little spiritually heavy, but still good.
  • You should totally get swabbed. It’s free. I’m planning to setup drives at work and for my bike team.

Note: I am not a doctor, just a guy who is really good at the internet and needs to know how everything works. That said, it’s likely something I wrote above is not entirely correct. Are you an expert? Did I get anything wrong? Let me know.