UPDATED:
September 3, 2006 -
Jump to update!
On June 29, 2005, I donated bone
marrow
to a 16-year-old girl with
ALL (acute
lymphoblastic leukemia). It
has been one of the most meaningful experiences of my life and I would
like to share it with you in the hopes that you will join the
NMDP (National Marrow Donor Program)
registry and follow through with donation if you are called. When
I was called, I couldn't read enough about other donors' and
recipients' experiences. I found lots of information about the
recipients but hardly anything about the donors, and when I did find a
page about the donor, there weren't many details to be had. So
here are pretty much all of the details about my donation.The Recovery
(If
you are interested in some really great links that I have found along
the way, they are listed at the
bottom
of this page.)
*** Donating marrow costs you nothing - all of your expenses are covered by the
recipient's insurance and the NMDP. ***
If you are interested in contacting me about my experience, feel
free to email me at
webmaster@marrowdonor.net.
Why Donate?
Before I start telling my story, I wanted to share with you an
email I recieved from a family memeber of a recipient who read this
site. I found it particularly touching and asked permission to
share it with you:
I have never
donated bone marrow; however I am on the national registry to do so.
What I would
like to do however is thank all of the people who have been donors. If
it had not been for one of those people my nephew, Greg, would not have
been able to have a bone marrow transplant. Greg didn't have a related
donor who was a match. My family, who is quite large, was at the mercy
of a total stranger for help.
Had it not
been for that young man who donated his bone marrow, then the leukemia
Greg had would of took his life. We did in the end loose Greg to a
fungal pneumonia, however because of an unselfish young man's kind
heart we had another year to spend with Greg.
We never got
had the chance to meet the young man who helped Greg, but he has and
will always be in our prayers.
If more
people would give unselfishly of themselves, the world we live in would
be a much better place.
The Seed is Planted...
My story starts a few years ago. I am a grad student at Penn
State and every year there is a huge dance marathon called
Thon to raise money for kids with
cancer. There are always many blood drives associated with it and
they added a
marrow registry drive for the NMDP as well that year. While I was
riding a bus from campus back to my apartment, I read an article in the
Collegian
(Penn State newspaper) about the registry and a student who had donated
marrow. I
thought that this was something wonderful, but being someone who hated
needles, I didn't think that I would ever be able to go through with
something like that. So, for the next year or two, that story
stayed in the back of my mind.
Joining
the NMDP Registry
After a while, I became a regular blood donor. I overcame my fear
of needles (well, I am still terrified of shots - my motto is that you
can take whatever you want out of me, just don't put it back in) and
felt an urgency to join the NMDP registry. So I started reading
about joining the registry and the marrow donation process on the
NMDP
web site and seriously started making a commitment to join.
Believe it or not, it was a little bit difficult for me to find an
avenue to
join. I had to make several phone calls and got bounced around a
bit. Then I found out that the
Central Blood Bank in
Pittsburgh will register you for free when you make a whole blood
donation (there can be a nominal fee to pay for the tissue typing
itself ranging up to around $60). Since my family is from
Greensburg, I made an appointment to donate while I was home for my
little brother's birthday. It was quite simple and since I was
already giving blood, there was no extra needle stick. They told
me that tissue typing can take some time and it would be about 3
months before I would officially be listed as a potential donor on the
registry. I donated blood to join the registry on August 28,
2004.
The
Preliminaries
On
March 4, 2005, I got a postcard in the mail telling me that I was a
potential match for a patient and that I needed to contact them as
soon as possible to tell them if I wanted to continue with the
confirmatory testing. I must admit that my heart sank a
bit. I was committed to donating but now this was the real
put-up-or-shut-up moment in my commitment. This moment quickly
turned my anxiety into resolve. The only problem was that March
4th was a Friday and I didn't get my mail until after 5 p.m. - I had to
wait
all weekend to call and get details. I just kept thinking
that it took 2 days in the mail (according to the postmark) to get to
me. Why didn't they just call me? Come Monday, I called
first thing in the morning and was told that the patient I was a
potential match for was a 16-year-old girl with ALL. This is all
that I will know about her until 1 year after the donation (that is the
significance of the ticker at the top of the page). The
lady I spoke to over the phone took a health history (pretty standard
history like the ones they ask you before a blood
donation) and told me that I would have to come into Pittsburgh to have
more blood drawn for confirmatory testing (to see if I was a good
enough match for transplant). The only problem was that I was
going out of town soon and couldn't make it into
Pittsburgh until after the trip. I called back and asked if there
was any way that we
could do this from State College and they were nice enough to Fed Ex me
a kit to take to the health center as well as everything I needed to
overnight
it back to them. Needless to say, the staff at University Health
Services gave me some weird looks when I came in with a box and
effectively told them to put my blood into it and give it back to
me. However, after a little bit of explanation, they were happy
to help me. So, it got Fed Ex'ed back to them on the 15th and
they received it on the morning of the 16th.
The
Confirmation
Then the waiting began. I was not optimistic that I would be THE
match. I knew that there was only about a 1 in 10 chance that I
would be a good enough match to donate once I preliminarily
matched. There was a part of me though that really hoped I was
the one. However, as the weeks passed, I slowly started to forget
about this whole thing. There was one point where I thought that
they just had to have already found a match and just forgot to notify
me that I was not it. Eventually, I called the Central Blood Bank
to see if they had heard anything. Nope, but they said that when
they do, they will give me a call. About a week later on May 5th,
I was
sitting in my office when the phone rang. On the Penn State
campus, there is a special ring when the incoming call is from
off-campus. When I heard that ring, I was sure that it was either
my husband or my mother. Needless to say I was excited to hear
that it was the Central Blood Bank and shocked when I heard the words
"bona fide match!" My mind was reeling with joy and
anticipation. They told me that they wanted to do a traditional
bone marrow harvest near the end of June 2005. I was pleased with
the method of donation since taking stem cells from the blood requires
about 5 days of
injections and I have already noted my feelings about shots. I
was also told that I would have to attend an information session, sign
a consent to donate and undergo a complete physical. We scheduled
that for May 20, 2005 in Pittsburgh.
The Consent
My husband and I arrived in Pittsburgh midmorning on the 20th and
actually found a close parking space (almost unheard of there). I
got to meet my coordinator for the first time. It was nice to
finally put a face with the happy voice on the other side of the
phone. This is where you get the talk. The one where they
tell you that
no matter how healthy
you are and not matter how much you
want to make them well, sometimes the recipient dies.
There is
nothing you can do and you should
never
blame yourself. I was
told to prepare myself for this - not that my recipient had a poor
prognosis, it just happens. After being instructed on the
donation
procedure, I was asked to sign a commitment to donate. This
document is not a legally binding agreement to donate and you are free
to change your mind at any time, but by signing this document you
confirm that you know that changing your mind after that point would
likely either kill that patient or cause dangerous delays in their
treatment.
If you
change your mind after they start their
conditioning chemotherapy and/or radiation therapy (which starts about
a week before donation) they will almost certainly die.
This is
because the conditioning kills off the immune system by killing the
person's bone marrow. If you change your mind after conditioning
begins, they will die from infection before another donor can be
found. I was happy to sign the commitment.
After I signed the paperwork, they showed me a movie that the NMDP has
made for traditional marrow harvest donors. I must admit, it is a
little dated. The movie really didn't tell me anything that I
didn't already know. After the movie, I was asked to donate some
blood samples. Most of these were for a research repository I
consented to join and the others were some infectious disease
tests. My husband was invited to come with me, but he is REALLY
squeamish about blood and opted to wait in the waiting room.
After
that was all said and done, it was time to go to the hospital for my
physical. But before we left, my coordinator made sure to try and
feed my husband and me. I am glad she sent us to the hospital
with cookies since there was no time for a meal in between.
The Physical
After about a 10 minute drive, my husband and I arrived at West Penn
Hospital. I meet the nurse in the BMT (bone marrow transplant)
center and she gave me a list of all of the appointments they had made
for
me throughout the hospital. The first was for a
chest x-ray,
then
an
ECG,
then more blood work and a urinalysis and then the appointment
with the oncologist who will be performing my harvest. I have to
admit that I was a little worried about all of the tests. Not
that I thought anything was wrong, but ignorance is bliss. There
really isn't too much to talk about with all of the tests... lots
of walking around the hospital and sitting in waiting rooms. When
I met with the oncologist, I think he was a little relieved to see
someone who was well. He was almost overly nice to me and kept
telling me what a wonderful thing this was that I was doing. This
embarrassed me a little. He gave a complete
physical, and sent me home. I was told that it would take about a
week or so for the results to come in and be reviewed by the oncologist
I had seen at the hospital and then also be reviewed by the
hematologist at the blood bank. Both of these doctors have to
give me the all clear before I can donate. This is set up to
protect me. It has to be clear that donating will pose no threat
to me or the recipient. If there was something, even minor, that
concerned either of
these doctors, I would not be allowed to donate. I had a little
bit of a bad feeling...
Intermission
After calling my coordinator at the blood bank once or twice about if
the results had come back (it had been a little more than a week), I
got the news that the doctor at the blood bank was concerned about my
hemoglobin/hematocrit levels. I was asked if I donated blood
often - I did every 8 weeks. By doing this and not eating
properly
between each donation, I had depleted my iron reserves with each
donation. So, I was
anemic.
This isn't that bad but,
considering that they wanted to take a substantial amount of marrow and
the blood that comes with it, they didn't want to make me any
worse. The penciled-in date for my donation (June 16th) was
canceled at least for now. I was devastated. You get
yourself really psyched up for something like this and to be put on
hold, not knowing if I was going to be the one to help this person and
wondering if this delay could hurt her, really tormented me. I
wanted to be the one to donate for her.
In the back of my
mind, I kept thinking that if I help this girl then, no matter what, my
life will have had meaning. There are so many things that I know
gives my life meaning, but I always think that anyone could do the
things that I do... That I am not so special, I just happened to
be in the right place at the right time. Donating bone marrow is
different. I really could be the only person out there that can
help this person. No other well meaning person could substitute
for me. That is a really awesome feeling and I was unsure
if it
would ever come to fruition.
I was instructed to take iron supplements (325 mg of ferrous sulfate 3
times a day). In a week or so blood work would be done to see if
my anemia has improved. If it looked sufficiently better, they
would reschedule the procedure. I took my supplementation
religiously. I went back to the health center for the test and
made
sure to pick up a copy of my results so I could see them as well.
They looked better, but I was unsure if they were good enough. I
called my coordinator the next day and she said that the doctor there
(the hematologist who put my donation on hold) thought
that I should be fine as long as the procedure was a few weeks away so
I could build up my iron levels. After consulting with the
recipient's coordinator, my donation was
penned in for June 29th!
I was elated. This was really going to happen!!!
Since they were going to take a moderate amount of marrow from me, they
wanted me to donate blood to myself. This kind of donation is
called an autologus donation and protects me from the slight risk of
being exposed to other people's blood. They asked me to donate 2
units, which would be roughly equivalent to a quart of blood. I
continued to take my iron supplements and went for my first donation
about
3 weeks before the harvest date. No problem. I went back a
week later and my hematocrit is 1% below the minimum percentage needed
to make an autologus donation - 32%. I am a little scared again
that this could stop the whole process. I call my coordinator to
tell her of this development and she tells me that she is not at all
surprised by this considering my history and how close my last donation
was. The doctors have already discussed this situation and they
agree that I will most likely do just fine with only one
donation. This puts me at ease and she calls me back within a
day or so and says that everything is still a go with the single
donation. Everything was a go... This was really going to
happen! All I had to do was take care of myself, not get hit by a
bus and make the hotel arrangements for the end of June.
The Donation
A few days before the donation, the hospital called me to confirm all
of the important information and to tell me what time to be there and
how to find the short stay unit in the hospital. They also
called me one more time just before I left for Pittsburgh the day
before the procedure. They ask things about advance directives
and next of kin, but that is what they ask everyone who is about to
have a surgical procedure - regardless of whether it is for an
angioplasty or a marrow harvest. Actually, the lady who called me
kind of giggled when she asked me about the advance directives when she
saw what I was coming in for. The trip into Pittsburgh wasn't the
best since it was rush hour and the MapQuest directions I had were
bad. But we eventually got to the hotel and checked in. We
brought all kinds of snacks and drinks since they are expensive at the
hotel and we had the room for two nights (I was only going to get the
room for the night before the donation but since there was a slight
chance that I may not have been discharged until the following morning,
I wanted to make sure that my husband had a place to crash for the next
night). Once we got there, we went to this quaint Italian
restaurant that was attached to the hotel. It was dead.
Well, it was a Tuesday in the early evening too. It was nice to
have some quiet time with my husband. After dinner, it
was back to the room. I took a nice long shower and made sure to
rid myself of any embarrassing body hair. My legs were never so
smooth that I can remember. After all, more than a few people
that
I didn't even know were going to have quite a knowledge of me after the
next day! Then I watched TV and had my last sip of drink and
sneak
of food just before midnight (you aren't allowed any food or drink
after midnight).
The next morning was very early... VERY EARLY. I was told
to be at the hospital at 6 a.m. for my 7:30 a.m. OR time. But all
of
the people that called me from the hospital told me that 6 was
cutting it close for the OR time. They all said that
I should really be there at 5:30 a.m. And to make me feel good (I
guess) they told me that I was the first scheduled OR time for the
day. So, after driving over two rivers and only getting lost for
a few blocks, my husband and I made it to West Penn Hospital on time,
parked and really didn't have any trouble finding the short stay
unit. We signed in and waited... They didn't call me until
a little after 6 a.m. (I could have slept in). That was a long
wait. There was so much excitement getting to this moment and
trying to sit there with all of that adrenaline was very difficult.
When I was called I was brought into triage to be weighed, measured and
labeled. I was shown to my room and told to change into the
wonderfully fashionable hospital gowns. Then, I waited some
more. The very nice nurse who triaged me came in and started to
ask me all of the precautionary questions that hospitals like to ask
before they do anything to you. I would like to share some of the
questions they asked but, since I am not sure what most of the things
they asked me about were, I can't recall the questions. Most of
my answers were, "I guess not," or "What's that?" and they told me that
I
would know if the answer was yes. Kind of like a 'you'll know it
when you see it' kind of thing. During the inquisition, they IV
nurse came in to cannulate me. Sounds bad but it really isn't
anything. I have had blood tests that hurt more. The funny
thing was that the questions kept coming evening when I was being
distracted. Once the IV was in, they took tons more blood
samples. Then, everyone left and my husband came to sit with
me. With all of the excitement of the morning, my kidneys kicked
into overdrive and I had to "go." So I visited the pretty nice
facilities that were in my room and felt MUCH better. Not more
than 10 seconds before I came out, anesthesia came in and asked for a
urine sample. I tried my best but I was all tapped out. My
husband and I joked about this some more and the anesthesia doctor came
in right as the sun was beginning to rise. He asked alot of the
same
questions that I had just answered and a few more new ones. I
must have signed 6 or so consent forms. Then the gurney came
in. This was the moment that I had been looking forward to.
As I hopped up onto it, I really paid attention to what I was feeling
just then. I was expecting to feel excited and a little
scared. To my surprise, I wasn't scared at all. I was just
excited and joyful. I was a little surprised by this but glad all
the same. My husband was allowed to accompany me to the OR.
I remember seeing all of the lights passing overhead and the ride in
the elevator. The elevator feels completely different when you
are flat on your back. My husband gave me a kiss at the OR doors
and I was wheeled in and parked in front of the room that they would
use for the harvest. When one of the anesthesiologists came out
to greet me, he told me that I was the only one he has worked with that
had a smile in a long time. One of the doctors who was going to
perform the harvest came out to greet me (there were 2 doctors, one
for each hip). I got another list of questions I had
never heard of before and then some more consent forms to sign from the
anesthesiologist. Then he injected my IV with something cloudy
and hooked me up to a bag of saline. I felt pretty good but
gradually became more and more out of it. They rolled me into
the very white OR and the last thing that I remember is saying
something about being a cheap drunk. I really hope that I passed
out after that since I have no idea what came out of my mouth!
The next thing I remember is waking up in recovery and just not feeling
right all together. Then a nurse yelling at me. Apparently,
when you are coming out of the drug induced haze, you are partially
deaf as well - well, everyone except for me. She also yelled at
me to breathe. I still had an oxygen mask on and apparently I
needed to up my oxygen levels. When the mask came off so did all
of the leads to the monitors they had stuck all over my body. It
was about then that I really noticed that my throat was sore (from
being intubated in surgery) and that all my "upper butt" muscles were
pretty sore. I don't want to say that I was in pain, because that
isn't accurate, but it was sore and uncomfortable. I asked for
more pain meds but they said that if they gave me more there, I would
have to stay there longer before I could see my husband. I opted
to stick it out and
go back to my room. That was about 11 am. The ride back was
not as pleasant as the ride down... This orderly couldn't drive
and ran me into a few obstacles on the way back to my room and I was a
bit nauseated due to the side effects of the anesthesia. When I
got to the room, they asked me if I could slide myself from the gurney
to my bed. To my surprise, I really couldn't. It was like
my butt muscles that make me able to move my hips were no longer
speaking to me (who could blame them). So, they moved me by the
sheet I was laying on to
my bed. Ouch. Not too bad, but ouch. They gave me
morphine but I ended up needing more.
I was in and out of sleep for the next few hours. Since I arrived
at the hospital, I had received my unit of blood back and several units
of saline. Needless to say I could have given anesthesiology that
urine sample now. But I had new mobility issues. Finally at
about 3 or 4 pm, I got out of bed with the help of a nurse and headed
to the bathroom - I didn't even care that my hind quarters were
hanging out for all to see. Just as I got to the bathroom, the
phone rang. It was my mother who had tracked me down. This
was
the worst time she could have called. But I relieved myself
and I can't remember when it felt better. Dinner came later, as
did the other doctor who did the harvest and my coordinator before she
left to take my marrow to my recipient. At about 8 pm, I was
discharged with an ample supply of pain killers.
It was a pretty restless night at the hotel room (I am glad that I got
it for two nights). I had trouble lifting my feet into the bed
and
sitting up. This was all due to those muscles not being on
speaking terms with me. My husband helped with my feet but I must
have visited the bathroom 3 times during the night because of all the
fluids they gave me. I didn't want to wake him up so I toughed it
out. I must have looked like I was 90 years old since I was
hunched over and taking many small steps.
The Recovery
The next morning we checked out of the hotel. It kinda sucked
getting out of the hotel but once I was in the car and on the way to my
mother's everything got better. I was surprised at how much
better I felt. The one thing that I was really bad about was
keeping on top of the pain meds. I would take them when I felt
bad and then be surprised when I felt bad again later. I don't
like
taking more medication than I have to so I am not one to take pain meds
unless I am in pain. Well, at least for the first few days, take
them BEFORE you feel bad again. It will make the whole experience
much better. My husband removed my pressure bandage for me (the
original one from the hospital) and inspected the incisions (he really
is a great guy, remember how I mentioned that he was squeamish about
blood, and he did this anyway). They were fine. No real
blood, just a little bit of pink watery discharge. He cleaned
them and
put new smaller dressings on. The hospital sent us home with a
nice kit that had all of the supplies that I would need for the
dressing changes. The day went by very nicely. I was well
medicated (most of the time), well rested and overall pampered by my
whole family. In the morning I got a beautiful bouquet from the
Central Blood Bank. A few weeks later I also received a nice
little pin with the NMDP logo on it that they give to their donors.
I really saw great improvements in how I felt every day. It was
uncomfortable to cross my legs but by the third day I was doing it and
not even thinking about it. On the Fourth of July my family and I
went to my apartment in State College to see the awesome fireworks they
put on for the holiday. I sat out on a blanket the whole time and
was bending over to light little fireworks with my little brother and
sister
in the evening. By then I was just slightly sore.
I did have a few small complications however. The first one is
that I was constipated for nearly 7 whole days! This is not an
unusual side effect with the anesthesia and morphine but by the 4th day
I was getting a little concerned. I wasn't feeling too
uncomfortable because of it, just amazed that somehow everything I had
eaten was being packed in so well. Needless to say, this resolved
itself just before I was going to see a doctor. The
second complication was that I developed an IV site issue a full three
weeks
after the
procedure. The vein in my hand where they put
the IV in became inflamed and developed a clot. This is called
thrombophlebitis.
This can be a very bad condition when it is in
the legs and not connected to an IV site issue. It made about 4-5
inches of the vein hard and felt like a cord under my skin. It
was very sensitive and was painful when I bent my hand too far back or
if I brushed my hand against ANYTHING. I was told to take 4 Advil
3 times a day and come back in a few days. By then, the inflamed
vein was reduced to about 2-3 inches and didn't hurt as bad.
After that it didn't hurt anymore and resolved itself completely in a
few weeks.
My Recipient
A few weeks after the donation, I got a card from the mother of my
recipient. She gave me a heartfelt thank you and told me more
about her daughter. She is an excellent student, going to be a
high school senior in the fall and runs cross country. Just a few
days later, I got a 6 page handwritten letter from her mother.
She told me my recipient has a younger sister (by only 21
months). They are a very close family who love the outdoors and
have many pets. She also told me the story of her daughter's
leukemia. When she was in 8th grade, she started feeling sick and
weak. They thought that she had mono, but it turned out to be
much worse. The night they found out about the leukemia, she was
admitted to the hospital and started on chemotherapy the next
day. After her leukemia went into remission, they put her on a
130 week road map that included daily doses of oral chemotherapy, lots
of blood tests and shots, spinal taps and bone marrow biopsies.
She did most of this at home and only had to be admitted a few times
for various reasons. Then, at the end of the 130 weeks, she
finished her treatment. All was well for 7 months. Then she
relapsed. She and her family were told that the best chance for
"long term survival" would be a bone marrow transplant. And, that
is where I entered the picture. She received the marrow on the
evening of June 30, 2005 and has been doing well ever since. An
interesting thing about donating marrow is that the recipient will
assume your blood type and your allergies. So, if you are a woman
with A+ blood and you donate to a man with O- blood, he will have A+
blood and it will have two X chromosomes (instead of his original XY
chromosomes)!
I have received many letters from my recipient and her mother. I
try to write as often as I can (actually, I try to keep myself from
writing too much). Every letter and card that I have sent or
received I keep in a scrapbook. After a year's time, if both of
us
agree, our personal information can be released and we will no longer
have to send our letters through the transplant coordinators and we can
meet if we want. I am looking forward to that day!
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