For this open post, I want to share something that I am
passionate about so others have the chance to research it for themselves and
possibly become involved in their own way. I will be giving a brief account of
what it was like to donate stem cells through the National Marrow Donor Program
available with
Be The Match. My hopes
are that some of you may get involved or pass along the information to others
who may be able to help.
A
little over two years ago, a friend of the family was diagnosed with an aggressive
form of cancer. It isn’t my place to share any more details than they did
manage to beat with the help of a donors through foundations like Be The Match.
Feeling helpless when I found out, I realized that while there wasn’t much I
could do to help our friend, I had the potential to help someone else one day.
I am a steady blood donor and all registered to donate my organs someday but
that somehow didn’t feel like enough, ya know?
So I signed
up over at Be The Match. From the testimonials I heard from friends and online,
it is very rare to get a call back. They send you a nifty little kit and all
you do is swab the four quarters of your mouth, put it back in the envelope,
and then send it back. From here on out, I have a paper trail of dates so I can
include those to show just how fast the process is.
01.15.15 - A few weeks
later, I get a phone call while packing the house to move: I was one of a dozen
preliminary matches for someone and am I willing to undergo a few more tests to
see if I match? Of course. Just name a time and place. So they set up an
appointment for some blood work that fit my schedule that week and it ended up
being just a few vials of blood drawn.
02.24.15 - Skipping
ahead a few weeks, I received a call that said I as close to a perfect match
than they could have hoped for. I would need to take 2-3 days off work, go
through a day of testing up in Gainesville, and attend a phone conference so I
was aware of the possible risks, side-effects, and so on. I agreed and they set
me up with an appointment at Shands Hospital. They informed me that I would be
doing a PBSC (Peripheral Blood Stem Cell) donation and sent me a rather
large packet of information about everything.
03.02.15 – The
whole day went by very slowly. The drive to Gainesville was long and I had to
undergo a lot of tests. There was a bunch of blood drawn, physicals done
by multiple physicians, and three separate psychological tests. The reason for
the psychological tests were that some people can’t handle the stress of
donating. When you go into it, all the information they give you about the
person receiving your stem cells is an age, gender, and vague description of
what is going on with them. In my case, it was “a woman who was between 60-75
who had an aggressive form of cancer.” The psychological testing comes in to
play because not all donors can deal with the stress of knowing their donation
may be the only option left and their recipient still may succumb to their
ailment.
03.08.15 – I get
a call that I was cleared fully and that, unfortunately, my recipient had taken
a turn for the worse. Her cancer was much more aggressive than they originally
thought so they would have to move things along as quick as possible. During
the phone call, I was told that our original plan of donating in Gainesville
just wouldn’t do and I would have to go to the recipient. I vividly remember my
Donor Specialist going “so… let’s say we needed you to fly out to Washington
D.C. next week, would that be a possibility?” I told her that I would make it
work even if it meant taking unpaid leave time from work. She immediately patched
me over to the phone call that explained all the risks, possible side-effects,
and everything else involved. It was overwhelming but anything to help someone
in need.
03.14.15 – My daughter’s
first birthday. It was equally amazing and horrible. In order to donate, you
have to take a 5-day-long series of doses of a drug called Filgrastim which
stimulates your white blood cell creation. Unfortunately, it has some horrible
side-effects that, in my case, included horrible migraines, flu-like-symptoms,
and back/joint pain that was way worse than I could have imagined and I have a high
pain tolerance. My whole day was spent sitting on the couch, trying to be cordial
to the guests, and hoping that my daughter wouldn’t ever look back at the
pictures and think that I was horrible for not really being a part of her
birthday party.
03.17.15 – The day
of travel came very slowly with how bad I was feeling. Luckily, they don’t want
you to have to travel alone so my wife came with. Both of our mothers offered to
watch our children for the two days we would be gone. By the time I was getting
ready to board my flight to Virginia, I wasn’t sure I was going to be able to
sit on the plane that long due to the lower back/joint pains. I brought along The Gunslinger by Stephen King and begin
another trip through the Dark Tower series as a way to occupy my mind. We
arrived late that night and were lucky to have a friend who lived right near
the hotel we were staying at. His wife was in her first year of being an E.R.
doctor and she knew a lot about the donation process, so we spent the night
hanging out with them, catching up and picking her brain about everything.
03.18.15 – We woke
up very early and headed over to the clinic. They gave me one last dose of
Filgrastim and hooked me up to the machine. I had to sit up in a hospital bed
and understand that I wasn’t going to be able to move much for the next 4-6
hours. I had a large needle going into my right arm and an even larger needle
going into my left arm. The process is that they take your blood through one needle,
cycle it through the machine, and replace the blood (minus the stem cells) back
into you through the other needle. It
was a long 5 hours but they provide you with movies to watch. My wife and I treated
it like a weird kind of movie date. By the time I was done, the nurse checked
the donation bag and was like “Daniel, how were your symptoms? Quite bad?” I
told her they were bad but it was manageable, why? “Well, we were shooting for about 300,000 for
your donation number and you gave us over 1,500,000. The larger the donation,
the more pain it usually has caused.” Luckily, this excess amount of pain came
with another benefit: they gave me consent paperwork so they could freeze all
of the extra stem cells in case my recipient needed more later on down the
road. My wife even got to take a picture with my huge back of stem cells, which she found fascinating.
Being in pain, having spent most of the day donating, they
told me to take it easy. So, being stubborn and knowing that my wife would love
to explore a bit, I decided we were going to walk around Washington D.C. and
take in the sights and museums for a few hours. It was painful and I felt
terrible but it was quite an experience. It was also incredibly cold. So after
about 7 hours of walking around the city, we headed to the hotel.
03.19.15 - We flew home very early in the morning. Once
again, not fun with the pain. Once again, reading got me through it. We got
home, spent the day with our kids, and slept a lot.
That brings me to today. It has been almost two years and I still
have no idea what happened to my recipient. One of the things that you have to
know going into it is that you aren’t guaranteed any knowledge of what happens.
I signed all the paperwork saying that “I did want to know the outcome if the recipient
allowed the information to be shared with me” but that doesn’t mean anything if
the recipient, or their family, doesn’t fill out similar paperwork. She, or her
family, have their reasons for not wanting to share the outcome. I take it as
something I wasn’t supposed to know. My hopes are that it helped her, even if it
was just a little bit.
The only other downfall to the whole process is that it has
the possibility of coming with side-effects that could last “a few weeks or
your whole life.” There is no way of telling when, or if, any of the
side-effects will go away. For me, it has been back pain in the same location
and feeling identical to how it hurt when I was taking the Filgrastim. The people
with the Be The Match foundation keep close tabs so they have more results and
research for further generations of donors but there isn’t anything they can do
to solve the problem. I don’t let it sway me; if they called me today, I would
drop everything to donate again. Not being able to sit comfortably for long
periods of time due to back pain is not much of a problem when you consider the
reason for it.
I know I didn’t pain the whole process in a very positive
light. The fact is that it isn’t supposed to be a vacation, it is an attempt to
help someone else. So if you have the ability to, please consider finding a way
to help or pass on the information to someone else.
