On Being a Stem Cell Donor (Part 2)

- shifting timelines and minor inconveniences -

This is the second in a series on my experience as a stem cell donor. If you missed it, check out Part 1 where I discuss my relationship to the patient, his diagnosis, initial testing for a match, and being identified as a match.

On Being a Stem Cell Donor (Part 1)

As I’ve talked with others about the stem cell donation process, I’ve realized most of us are woefully uneducated! There are far too many people waiting for a donor because there's no known match--especially in non-white ethnicities.

The goal of the series is simple: increase awareness, reduce fear and misconceptions about being a donor, and help save lives.

---

In Part 1, we left off with the call:

“You’re a perfect match, and Dr. Veeraputhiran wants to use your stem cells for your brother’s transplant.”

This was Cloud 9 for me. The patient is my brother, so of course I wanted to be a perfect match for him, but this probably won’t be everyone’s experience because…well, fear. Our human nature is to fear the unknown. We are loath to commit to something that may involve discomfort or inconveniences.

Some people are deathly afraid of needles. Others get anxious in medical facilities. I get it. That’s why I want to be completely candid about the process.

Image by graciousquotes.com

Just know that my motivation to have my brother around for years to come played a large factor in my choice to donate. I’d like to say I’d gladly do the same for a stranger, but I can’t speculate on those feelings.

Let’s take a look at the time commitment and logistics.

(If you want the TL;DR version, you can jump to the recap at the end.)

Timeline and Logistics

I am a planner. I am a recovering perfectionist. I was the kid who shook the presents before Christmas because I really had to know what was in there. I want to know all the things (which isn’t necessarily the best way to live life, but it serves me well in my day job as an IT security analyst). Naturally, I wanted a timeline and dates.

To Vacation, or Not to Vacation…

We had a summer vacation planned—a relaxing time with all of our adult children and the grandkids the third week of July at a large home situated between a city with lots of cool things to do and some mountains. We had not had a family vacation like this in years, and I was so excited that our schedules all finally aligned for us to have this time of fun and bonding with maybe an ounce or two of drama because…well, family.

Mike and I had also committed to lead a week-long program at our church the fourth week of July.

Foreshadowing: Have any of your heard of Murphy’s Law?

When I returned the initial test in late April, the coordinator could not give me a specific timeline for the transplant. She could, however, tell me that testing would be complete in 4-6 weeks. I hurriedly checked my calendar. Six weeks would land exactly 10 days before the refund cutoff for the vacation home.

We opted to wait until we knew the match status to make a decision. If I wasn’t a match, the vacation would go on as planned. If I was a match, we’d decide what to do then.

Two weeks after I sent my sample, I accompanied my brother to a doctor’s appointment—the same one where I received the email from Be The Match (really cool story if you haven’t read Part 1). Since I knew I was probably going to be a match, I asked again about the timeline. The people in the room (transplant coordinator, nurse, doc) talked as though they were shooting for June.

Full disclosure: I was a little excited that we might get this done in time for me to still go on vacation.

That bubble was burst three weeks later. The coordinator called and confirmed I was the donor they wanted to use, and they were now looking at a late-July or early-August timeframe for the procedure.

We called the kids to break the news that vacation wasn’t happening. We also contacted our pastor and discussed the program we had committed to at the end of July. And you know what? No one threw a fit or called me names or told me they were never speaking to me again. The kids were like, “It’s fine—we’ll do it another time!” And our pastor told us there were a couple of other scheduling conflicts, so he was going to cancel the program anyway—no big deal.

I realized I had been more worried about disappointing others than I really was about canceling my plans. I even started to relish the idea of not putting anything on my calendar for July and August. I had never had such a naked grid in my life, and it felt good, free, and selfish (except no one can call you selfish when you are donating life-saving stem cells, right?).

Moving Targets Are Only Fun at Carnivals

Fast-forward nearly three more weeks (June 20th) when I finally got firm dates:

• July 5: physical tests for final clearance

• August 4-9: collection process

August? You mean I could have taken my vacation???

All good. Yay for concrete dates! I scheduled to get the grandkids for a few days during July. I also booked an Airbnb for our collection dates and let my boss know when I’d be traveling and in appointments.

I was finally planning some things—the dopamine was flowing!

Eight days later (June 28) while Van was at his routine appointment with his doctor, Amanda (transplant coordinator) messaged me: “When is your planned vacation?”

(This is a good time to note that during the call where she confirmed I was a match and asked if I was willing to be a donor, she also asked about any dates that would not work for me. If I had been inflexible on my vacation dates, I’m sure they would have worked around those.)

She told me that they were possibly moving the transplant dates to “mid-July.”

A few days later she confirmed that my appointment dates had changed:

• July 5: physical tests for final clearance

• July 21-26: collection process

I cancelled the Airbnb because it wasn’t available on the new dates and booked a different one.

I called our daughter to tell her we couldn’t keep the grandkids that week. I had planned lots of fun things that would make me the best Ayah¹ in the world. I was bummed about losing that time with them. Yes, even though my brother was fighting cancer, I had a small pity party (told you I was being candid) over this.

Image by ineedinspiringplease on Blogspot

One minor inconvenience to note was the travel. We live a 5-hour drive from Little Rock and drove to UAMS on July 5th for my physical tests, which included—labs (to test for certain viruses), EKG, chest X-ray, and appointment with a doctor for final clearance.

A week later on July 12, Amanda called to change dates once more:

• July 22-27: collection process

Thankfully, it was easy to change our Airbnb reservation dates, and once again I updated my boss on the dates. I’m fortunate to work for a company that allows me to work remotely 100%. I would have used my vacation time (PTO, annual leave, whatever you may call it) if I’d had to, but that would have left me with very little for the rest of the year.

Two and a half weeks before our travel date, we finally had what felt like a semi-firm plan. I held my expectations loosely, though, knowing the dates could change again at any given moment.

Recap

Let’s recap the timeline for those who are still with me:

• May 2 - Be The Match confirmed I was an initial match; doctor speculated transplanting in June

• June 1 - Further testing from UAMS confirmed I was a perfect match, and transplant date would be in “late-July or early-August”

• June 20 - Received firm dates of July 5 for physical tests and August 4-9 for stem cell collection

• June 28 - Received message that stem cell collection dates “may be moved to mid-July”

• July 1 - Confirmation that collection had moved to July 21-26

• July 5 - Drove to Little Rock for physical appointments (labs, EKG, chest X-Ray, doctor signoff)

• July 12 - Received a call that collection dates had changed once more to July 22-27

• July 12-21 - held my breath and prayed the dates wouldn’t change again!

And just to remind everyone of the inconveniences so far:

• Canceled my family vacation (but I probably could have insisted I was not available for stem cell collection that week)

• Canceled time with grandkids

• Had to travel to Little Rock for physical tests (5-hour drive one way)

• Dates shifted several times

• Had to take some vacation time from work (but this could be more for some donors)

But all that was still worth it because…well, look how sweet my brother once was to me.

My brother (~3) and me (~1) back when avocado green, harvest gold, and orange ruled

Be sure to subscribe to get Part 3 delivered to your inbox as soon as it’s published. I’ll talk about the actual stem cell collection process and what might be uncomfortable for some.

And please share this post to raise awareness about the donor process!

1. Yes, I have grandkids, and they call me “Ayah.” There’s a longer story behind it, but the main thing you should know is that my first grand was born when I was 35. I refused to be called “Grandma” or “Maw Maw” or one of those modern cutesy grandmother names (I’m looking at you, Gigi). So I’m Ayah.