Hit the Numbers on My Birthday! My
Gift of Life
Editor's note: On April 11, 1996, Mike Hofschulte underwent a surgical procedure
to remove a half gallon of bone marrow from his hip bone. The transfusion
of this marrow was a last ditch effort to save the life of a man with Chronic
Myelogenous Leukemia (CML).
On my birthday, a letter was drafted by Patty Walsdorf from the Blood Center
of Southeastern Wisconsin. This letter was part of the greatest gift
I ever received and it changed my life. I was informed that I was an
initial match for someone with leukemia who was critically in need of a bone
marrow transplant to survive. She was requesting that I volunteer to
undergo further testing to determine full compatibility with the man in need.
I hate needles, partly from being a pin cushion during my decade of active
duty Navy service. Some vampires were much worse than others. Over
the years, I developed a Pavlov reaction to getting stuck that sometimes put
me on the floor! Yeah, I was a needle wimp. But in weighing it all out,
I wouldn't let that get in the way of my decision to try to save this guy's
life. It helped when both Sandy the surgery nurse and Judy at the blood
center, enlightened me to the fact that 75 percent of all men were needle wimps
Many people have asked me many questions about what I've done, what I felt
and why. Let me take a moment to answer some of them.
Why donate? Why should I care about someone I don't
This is a very personal decision for most, but I don't mind telling why I considered
it. In the last five years I watched four people in my family die. Two
died very quickly, some say that they were blessed. But two suffered immensely,
and as I watched them die slowly I wished that there was something ... anything
... that I could do to help relieve their pain. There wasn't a thing
I could do. It was a very helpless, empty feeling.
I was now in a position to make a difference for someone in a similar situation. Without
a bone marrow transplant (BMT), this form of leukemia, called CML, could claim
it's victim in about 3 - 5 years, possibly sooner. With life giving marrow
this person's chances of a full remission (recovery -- free of cancer) was
as high as 80 - 85 percent!
I also looked at the fact that, hey, if I came across a car accident and suddenly
it caught fire with someone inside, would I do anything? Of course I
would. My wife Eileen agreed that there was no doubt that I would try
I signed the back of my drivers license to be an organ donor, but I'd probably
have to be dead to do most of that donating. With bone marrow donation,
I would replenish my marrow in about 3 weeks (and remain alive too).
My decision was almost immediate. I HAD to help this man survive. We
already had something in common; a similar tissue typing.
What is Leukemia?
Leukemia is a form of cancer in the blood. There are many types of Leukemia,
but basically, it's like weeds in a garden. The "garden" being
your bone's marrow. Stem cells, "baby" cells that mature into
all types of blood cells, grow in the spongy area inside our bones called marrow. The "cellularity" of
the bone's interior where the marrow is produced is the size of this garden.
Marrow is found in all our large bones and is the incubator for stem cells,
which ultimately grow up to become blood cells. Red blood cells carry
oxygen, white cells fight disease and platelets clot blood to close wounds
when we're cut. Leukemias reduce the cellularity of the bone's marrow
spaces, the "garden," by an uncontrolled growth of these cancer cells
-- defective types of white blood cells.
Red blood cells are supposed to be produced at a rate of 1 billion an hour,
white blood cells are usually manufactured at 400 million an hour and platelet
production varies in person to person. Bone cellularity should be around
50 percent. When it's reduced by cancer cells that crowd out the areas
where these stem cells mature, all types of blood cells can not be replaced
at a rate fast enough to grow and become productive, working blood cells. Eventually
these good cells can not replace themselves fast enough to sustain life.
BMTs are also used to treat many other diseases, I once heard as high as 80
diseases, including Aplastic Anemia, Multiple Myeloma and Breast Cancer.
How will your marrow help this person?
My marrow will replace his destroyed marrow and hopefully take root (engraft)
in his bones and grow. Waiting to engraft after BMT can be anytime between
day +14 to 19 after the bone marrow transplant, but there are always variations
on those numbers. In its simplest form, it's a little like an oil change --
out with the old destroyed marrow, in with the new. (Although they don't
really remove the destroyed marrow.)
How Were YOU Selected as a Match?
Matching is much like hitting the lottery numbers. To date, of the over
2,000,000 people typed by the National Marrow Donor Program (NMDP), only around
4,300 unrelated people like me have been fortunate enough to be selected to
donate. Currently only 65 percent of all people requiring bone marrow
transplants can find a suitable donor. Thirty-five percent are not so lucky. The
key to unlock their disease is in the bones of someone still untested.
In March of 1994 there was a bone marrow drive at Johnson Controls, my previous
employer, to help an employee with leukemia. It took a little courage
to go down to do it, but I wanted to try and make a difference. I just
turned away when I was stuck. Only about two tablespoons of blood were
drawn to be tested. I never matched the man I was tested for, but I volunteered
to have my typing work placed in a national databank.
Typing involves a process similar to the blood typing system (i.e., A+, AB-,
O+, etc.), but it's much more complicated. HLA (Human Leukocyte Antigen)
matching is a combination of 6 major tissue typings that must match between
the donor and recipient of the marrow. HLA markers are found on the surface
of the white blood cells. These "soldier white blood cells," known
as T-cells, identify what is from our body and what is a foreign enemy (i.e.
disease, virus, bacteria, infection) to be fought by the immune system. The
doctors search for a 6/6 match in the registry, but even that doesn't guarantee
a successful BMT.
There are hundreds of minor antigens that also affect compatibility. If
we do not match well enough, my cells could react against his cells in a disease
known as Graft vs. Host Disease or GVHD. The donor's bone marrow "T-cells" conquer
in a battle with the recipient's T-cells. It is usually not fatal, in
fact a small amount of GVHD is good, much like a vaccine with a small amount
of a virus ultimately protects us from that virus. Theoretically in Graft vs. Host
disease, the donor's T-cells go to work killing off any remaining Leukemia
cells not yet destroyed by the chemotherapy and/or radiation treatments given
prior to the actual BMT transfusion.
Two "HLA-A" antigens, two "HLA-B" antigens and two "HLA-DR" antigens
are inherited from each parent, resulting in pairs of numbers, for example: "A2,
A24; B3, B13; DR4, DR6." Scientists have discovered 24 different
HLA-A types, 52 HLA-B types and HLA-20 "DR" types. There are
over 600 million different HLA typings when you put together all the possibilities
(in combinations of six). Some typing pairs are predominate in the population,
though, so the chances of matching someone in need are more realistically in
the 1 in 20,000 range.
The DR typing test is more expensive than HLA-A / HLA-B typing, so initial
HLA work-ups sometimes detect only the HLA-A and HLA-B antigens and the potential
donor has only four of their six possible typing numbers initially on file. Think
of this initial match as matching 4 of the 6 lottery numbers. Currently
only 49% of the people in the registry are DR typed. Steve Gardener, PR Director
at our local blood center, reported that they are now trying to get all six
HLA numbers from the initial blood test.
My four numbers for HLA-A and HLA-B typing work were discovered to be a partial
match (4 of 6) for this man with leukemia. This occurred two years later
than the date I first entered the marrow registry by giving that original blood
sample. I was then called back for extensive, and expensive (but not
to me), DR typing for the last two antigen numbers.
Our blood types do NOT have to match -- but his blood WILL change to be A+
like mine after the procedure. Also, he may pick up any allergy I might
have. Other strange things may occur. In some rare cases the recipient's
hair, lost during the BMT process, has returned a different color and texture. For
example, originally blond and straight, after BMT it could grow back black
and curly. One BMT recipient commented that her so called "wig" was
her REAL hair and it cost her a million bucks to do it! Another BMT recipient
informed me that hair follicles can be changed by the chemo, and this hair
change is not really caused by the donor's marrow.
Dr. Robert Graves, the Navy, along with others, originated the NMDP in 1987,
primarily to build a databank of tested and typed people. In the event
of a nuclear submarine disaster, these volunteers were willing to help supply
bone marrow for the crew who might need BMTs to survive. The Navy still
pours money into the program to this day, some of it to pay for the testing
of individuals with an ethnic heritage to increase the diversity of the national
marrow registry. Matches are most easily found in people with the same
heritage, but in some cases, for example, Caucasian donors have matched and
helped African Americans and vice versa.
Because of genetic make-up and/or ethnically mixed backgrounds, the possibility
of finding a compatible donor match is more like 1 in a million for some. This
is especially true for people of African American, Hispanic, Native American
and Asian ancestry. Few of their typings are in the databank registry of HLA
typings at the National Marrow Donor Program (NMDP). Over 70,000 people
were tested in drives to help Michelle Carew, the leukemia-stricken daughter
of baseball great Rod Carew. Not one of the over two million people on
the registry matched her, partly due to her unique HLA typing as a result of
her ethnically mixed background.
Although at the time I entered the registry, I was comforted by the fact that
I probably would never be chosen (remember that I hate needles), I now considered
it an enormous privilege to be chosen to save a life! The potential outcome
of giving someone a "re-birthday" far outweighed any concerns I could
have for myself and my petty little fears. It was something I had to
overcome, for this man's sake -- for his life!
How Did You Deal with your Fears About Donating?
I never thought I could be happy about any operation, especially after avoiding
hospitals and needles at all costs for most of my life. Once, when the
blood center called to ask for a pint of my blood, I must admit that I turned
them down. "I get deathly ill." I said (still feel guilty about that
one). I also avoided necessary stitches in my leg and now have a huge
6 inch scar as a result.
I found that accumulating as much information as possible helped me deal with
the situation. I surfed the Internet for as much information as I could
get my hands on. I printed off a small book of stories, HLA typing information,
and whatever else I could find. I approached the situation as a reporter,
thoroughly researching my story. Also, I joined a bone marrow transplant electronic
mail support group called "bmt-talk" and met many friendly people
who have had BMTs. Rosemary & Paul, Amy, Bob, Lorraine, Susan, Carol, Nancy
and tens, if not hundreds of others shared their stories with me.
I began to fully understand the magnitude of this "gift" from the
viewpoint of someone who needs, or has had one. One of their email posts
became my motto: "THE TWO BIGGEST FEAR BUSTERS ARE KNOWLEDGE AND ACTION." I
was working on the knowledge part and ready to jump into action. I also
drove my friends nuts talking about it! I was as determined to get the message
out as I was doing my "therapy" to relieve anxiety. My enthusiasm
encouraged Mike Hall, an African American, to be tested. He is now heavily
involved in recruiting others to join the registry.
The thought crossed my mind about what would happen in the remote possibility
that I died during the surgery (who knows?). Nobody ever died donating
marrow before. Still, I made a few plans but I knew it was a very low risk
procedure for myself as the donor and was at peace with the whole thing. Some
strange sense of calmness, excitement and anticipation surrounded me and the
fear was virtually eliminated by the day of the marrow harvest operation. In
fact, I was joking with the doctors on the way into surgery.
Finally, an Elm Grove clinical psychologist by the name of Lee Angert called
me at home as result of seeing a TV6 news story about me on April 4th. Lee
said he admired what I was about to do and that he wanted to provide a free
service to rid me of my fear of needles. He had more sheepskin on his
wall than the average flock of the animals! He was for real. I walked
in skeptical and left a believer. He used a technique called EMDR - Eye
Movement Desensitization and Reprogramming and my phobia was gone in 30 minutes! I'm
going to be a regular blood donor now, every eight weeks.
Does a potential donor go through any more preliminary
Yes, about 5-10 hours worth of exams and counseling sessions. That didn't
include travel time in my case, which was only about 15 minutes wherever I
had to go.
I was called by Patty and she asked me to come to a meeting with Dr. Raiff,
the lead NMDP doctor, and herself. I asked so many questions that a 1-2
hour meeting lasted three hours. I probably asked questions the doctor
never thought of before because he had to really think about some of them.
Patty wouldn't let me say YES that day. I had to wait 24 hours to think
it over. I was never pressured in any way to agree to the procedure. She
volunteered to write letters to my employers for the time I would be out. My
employer, Rockwell Software, and my boss Terry Dunst, couldn't have been more
supportive of what I was doing. I called Patty with my answer in about
18 hours. She accepted the "Let's do it!"
We got started. On Valentine's Day I gave 9 vials of blood for the second
stage of compatibility testing * The DR typing. Many potential donors
start getting excited at this point, only to find that they really don't match
after this stage of testing to find the last two "DR" numbers of
the HLA typing. It's like the lottery again, only you've got four matching
numbers and are trying for two more out of the 20 possible DR HLA types. One
lady I talked to had the initial testing done three times before for other
people until her true match and donation to a man on the west coast. One
donor I know was tested five times.
I had a good feeling that I was his type, so to speak. They also used
some of my blood to mix with the recipient's blood and watched to see if our
blood would "fight" each other. It didn't.
Later that month, I discovered that I was selected for an Officer program in
the Naval Reserve. The next day I found I was selected again, as a perfect
match! I felt incredibly lucky and started buying lottery tickets as a result.
All my costs are paid by the recipient's insurance, so what looked to be over
$20,000 of marrow donor expenses would be bills that I'd never see.
Now that you're a match, what next?
The next phase of action had me at Dr. William Matthaeus' office, a doctor
of Oncology -- a cancer doctor, an "OncDoc". The Federal Transplant
Act of 1990 requires a physical by a neutral third party. This same law
also prohibits the donor and recipient from knowing each others' full identity
for one year; although we can still communicate on a first name basis via the
He checked my general health and determined how much marrow I could safely
give. The surgeons can take a maximum of about 0.31 ounces of marrow per pound
of body weight (or 20 ml. per kilogram, for those metrically inclined). The
exam was more thorough than my active duty Navy departure physical. I needed
a free physical anyway, since I hadn't seen a doctor since leaving the active
Navy. He explained away concerns I had about the white spots on my chest
X-ray when I sneaked a peek earlier. "Just blood vessel nodules." he
After clearing this hurdle, I began giving my "auto-units," the two
pints of blood I'd be giving back to myself during the surgery. Not everyone
needs to give blood for their own bone marrow surgery. But with the quantity
they needed from me, it became a necessity. To my knowledge, 1800 milliliters
(about half a gallon) is about the most marrow a donor has given to date.
Later that week, I received another physical from the surgery physician's assistant
Janet who explained the whole procedure in detail. She asked me if I
was a runner or other type of athlete, because their bones are harder and require
more drilling force. This was far from my situation * I warned her that
if that's the case she might punch right through one side and out the other!
I don't work out much.
Her hip bone model with holes in it looked to be that of a 10 year old. She
showed me the "Jamshidi" tool they used to harvest the marrow from
the top of my hip bone, the iliac crest. This tool is a combination drill
and syringe tool that is a tube holding a 1/8 inch steel rod inside, cut off
diagonally at the end. That's its drilling point, operated by hand with
it's blue T-handle. She described how it was screwed into the bone until
it hits an area that feels like interlocking mesh gauze. That's where
the marrow is.
When they hit this spongy marrow blood cell factory, the "drill" is
then pulled out and a syringe in screwed on the threaded end. When one
socket dries up, they poke for another area or go deeper. The surgeon
usually digs five new holes in the bone from the same incision point by manipulating
the needle at different angles. They can also go three levels deep into
the bone per hole.
What happened on surgery day?
I awoke at 5:30am to shower with a special antibacterial soap as my first prep
for surgery. My wife drove me to the hospital, arriving at 6:15am.
had the first surgery that Thursday, they called
me the night before to inform me of that fact.
I changed into a hospital gown and put on booties and a blue hair net made
of the same semi-transparent soft mesh stuff. I denied a wheelchair ride to
the surgery prep center, waved goodbye to Eileen, and walked with a nurse to
my curtained prep-suite. The first test of my needle-fear treatment was to
occur. I watched my IV go into a vein of my left hand and passed the test with
The first try by the anesthesiologist, Dr. Doyle, was unsuccessful, so I also
watched a second time as the nurse tried again in my right hand, successfully
this time. Dr. Mary Horowitz, my surgeon, walked in to introduce herself and
I joked with all as I was wheeled into the operating room. I looked around
for about two minutes, then unexpectedly was OUT COLD! I didn't dream
a thing. I thought I was supposed to count backward or maybe get a gas
mask put on or something just before going under. I could've chosen to stay
awake by getting a spinal anesthesia, but at the time I chose I was a needle-wimp.
During my surgery six incisions half the size of a pinkie nail were made to
allow insertion of the tool (incisions that small required no stitches and
didn't even hurt like cuts usually do when I woke up!) Two doctors worked
both sides of my hip bone at the same time * Dr. Horowitz on the left and Paula,
a new physician's assistant, on the right. (Janet, the original physician's
assistant who checked me out had suddenly become ill, so Paula came in on her
day off to do my harvest.)
After the hole was cut in my bone, the "drill" portion of the tool
was removed and the syringe was screwed onto the threads of the Jamshidi. My
marrow was then sucked out by pulling the syringe back, much like collecting
a regular blood sample at that point. Some marrow comes out as thin as blood,
others have very thick marrow and comes out a drop at a time. Mine was
described as a medium "stubborn," so my operation took 2.5 hours. My
sister Deb is a nurse who observed a marrow harvesting operation. She
said the marrow she saw looked like "jelled strawberries." After
collecting it in the syringe of the Jamshidi, they squirted the marrow into
a jar with a filter over the top to strain out bone chips.
When I awoke in the recovery area, Eileen was there. I was groggy, but
remember the courier who was flying my cooler of marrow somewhere east to the
recipient had to return from the airport to get more vials of blood. These
were ordered by the transplant center. They popped an IV tube installed
when I was under specifically for drawing blood for tests. How nice of
them, I thought, that they didn't have to keep sticking me for blood samples.
Six cuts are laid out on my back like a "V" following the contour
of the top of my hip bone. There are now about 30 holes in that bone. I
was told by Al Anderson, a fellow donor (in 1985), that an X-ray of my hip
bone right now would look as if I was hit with a shotgun blast! This
all heals over soon and I didn't feel the bone holes at all. My marrow
will all come back in three weeks. The pain is really not pain at all. It's
more like a muscle ache, much like when I laid 15 pallets of sod with my brother
in law Rich for his new lawn last year. My ache was completely gone in
less that a week. Some people don't feel a thing!
My own immune system was not weakened in any way by the procedure, they only
took about five percent of my body's supply.
Most people leave the hospital on the same day, but my blood pressure was too
low. I stayed in the hospital overnight, watched Seinfeld, and was pumped up
with 6 liters of fluid. I felt better by 8pm and the nurse went for a
walk with me. My fingers were like bratwursts and my cheeks looked as
if I blew them out like a chipmunk. This all went away soon. Despite
my recovering state, the feeling was pure exhilaration, a high as intense as
being at the birth of each of my three children! Nothing else compared.
The next morning I gave another blood sample to be tested and John, a third
physician's assistant, pulled off the pressure bandage on my back. I
wished I was either less hairy or had been shaved. It was the only thing
that was close to hurting. Dr. Horowitz and John came back later and told me
all about the surgery. When my family arrived I was released and I walked out. I
fixed my vacuum cleaner that day.
What Happens to the Man Who Needs Your Marrow?
I learned that this man was prepared starting about 10 days before the procedure. He
is brought to the edge of death with a procedure called Total Body Irradiation
(TBI). Massive doses of chemotherapy and possibly radiation therapies are given
at a level much higher than the body can withstand under normal circumstances. I
had to sign a grave statement earlier that if I was to back out, this man WILL
die. TBI is meant to kill all the cancer, but it also destroys some "good
cells" in the process. Some of these good cells are the hair follicles
(that's why the hair falls out), the entire digestive tract - no saliva or
other digestive juices - and the bone marrow, which is completely destroyed
in the TBI process.
He also loses his immune system as a result, because the marrow they killed
off makes the disease fighter cells. During this time it's especially
critical that he avoid all infections, or it could easily take over his body
and he could die. A donor friend of mine lost his BMT recipient Roger
in this manner. The emotion is like a death in the family after all you've
gone through to save his life. Some people live in a plastic sterile
bubble, but I've heard of people sent home during this critical recovery phase. Some
doctors say a home can be more germ-free than hospitals.
My marrow was transplanted into this man via a painless transfusion. He
may have received all 4 and a half blood bags full of my marrow, but some transplant
centers treat the marrow with a process called T-cell depletion to make it
less likely that he'll experience severe Graft vs. Host Disease. The
marrow finds its way into the bones and "engraftment" takes place
when the new marrow begins making an adequate number of new cells. Only
then does the immune system come back. The white cells are the first
to come back and when their counts start rising the patient usually starts
What are the Personal Rewards and Reactions of Others
People have called me everything from completely nuts to a saint, but I'm neither;
just an average guy trying to make a difference. Almost anyone could
do what I did.
I've received two cakes, a card and thank you plant/balloon from the blood
center. I also got a "save a life" T-shirt from the blood center,
usually only given to those who have donated 8 pints. We joked that,
for a shirt, a half gallon of marrow donated is the equivalent of a gallon
of blood. Our blood center also has an annual banquet for all the donors
who gave that year.
I received overwhelming support from my email friends and all others who discovered
what I did. A neighbor called me in tears to thank me for what I was
doing. The doctors and nurses took extra special care of me and often
let me know what a great thing I did.
The vampires were all gentle and all did their jobs expertly. I'm not too bad
with needles now. My dad even told me he was proud of me for the first
time in my life. Patty from the blood center came bedside after the surgery
and told me his name..... This meant a lot to me.
But the biggest reward that came out of me donating bone marrow was the tremendous
great feeling I got when I was able to come to the patient's aid and hopefully
save a life. My bone marrow recipient could be free of this disease right now!
He can be there for his family and see their weddings, births, celebrations.
He will be able to watch his family grow and provide his wisdom to them for
many years to come. He'll be in the good memories of his children, grandchildren,
maybe great-grandchildren and making a difference in this world himself. He
may even be the one meant to cure cancer.
I would do it again in a heartbeat -- they wouldn't be able to get me into
surgery fast enough. My marrow donation was the fifth best day of my
life, next to the days my children were born and my wedding day.
Please consider donating that small blood sample, like I did in March of 1994,
to register in the National Marrow Donor Program registry of lifesavers. Being
chosen is like winning the lottery! It'll change your life, and could save
Have a great day!