Written by Mike Hofschulte
I Hit the Numbers on My Birthday!
My Prize? The 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).
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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 anyway.
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 know? 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 its 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 to help.
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 - - a 6/6 match!
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 marrow destroyed by radiation and chemotherapy and hopefully take root (engraft) in his bones and grow. They don’t place the marrow into his bones; it’s just like a simple blood transfusion. 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 (May 96), 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. That’s all it takes to get on the donor list. 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 somewhat 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 20 "HLA-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 in Milwaukee, 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. I later found out (May 97) from his wife that they must have got all six of mine in the initial test and that I was one of six people who matched Robert as a 6/6 match. They told them this on Feb 1st, and I was notified on Feb 2, 1996. I was probably asked first because we had the same blood type, A+.
Our blood types do NOT have to match -- but his blood would’ve changed to A+ like mine (if he had a different blood) type 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. She ultimately received a cord blood transplant (from a baby’s umbilical cord at birth – this does not hurt the mother or baby at all. Expecting mothers, think about donating cord blood and ask about it).
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 before they put me out with anesthesia.
Click HERE to see the rest of the donor story.
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