I Hit the Numbers on My Birthday! My Prize? The Gift of Life...
Last Modified: November 1, 2001
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). Since the original posting, Mike has updated his story in The Final Chapter.
A Bone Marrow Donor's Story
On my birthday, a letter was drafted by P.W. 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 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 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 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.
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. S. G., 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, and 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 M. H., 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, a clinical psychologist by the name of L.E. called me at home as result of seeing a TV6 news story about me on April 4th. L.E. 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 testing?
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 P.W. and she asked me to come to a meeting with Dr. R., the lead NMDP doctor, and herself at the Blood Center of Southeastern Wisconsin, located in downtown Milwaukee. 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.
P. 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 P. 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. W. M.'s 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 blood center.
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 told me.
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 J. 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. I 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 flying colors.
The first try by the anesthesiologist, Dr. D., was unsuccessful, so I also watched a second time as the nurse tried again in my right hand, successfully this time. Dr. H., 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. H. on the left and P., a new physician's assistant, on the right. (J., the original physician's assistant who checked me out had suddenly become ill, so P. 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 J., 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. H. and J. 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 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 celebrating!
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 -- Robert. 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 Robert's aid and hopefully save his life. He's 50 years old now and could be free of this disease right now! He can be there for his family and see their weddings, births, celebrations.
Robert 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, as 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 another!
More information can be found on the Internet at http://www.marrow.org or call the NMDP at 1-800-MARROW2. To subscribe to bmt-talk, email a message to email@example.com and just type the word SUBSCRIBE. You'll meet a bunch of great people with big hearts and learn tons of the latest information, sometimes faster than the doctors discover! Your local blood center may also be able to help, and get you tested, typed and registered into the NMDP databank of lifesavers. If you have been contacted as a potential marrow donor and would like to discuss your concerns with me, I'd be happy to talk to you. My email address is: firstname.lastname@example.org.
I'm sad to say that Robert died on Jan. 9th at 10:45pm in Virginia. His wife and sons were with him. He contracted a respiratory disease known as Aspergillosis. This condition was unrelated to the transplant back in April, but his weakened immune system was unable to effectively combat what a full-strength immune system handles every day.
I did my best to help him have a fighting chance. I wished and prayed just as much as his family that this would be a success, because, you see, we WERE family. We exchanged many letters, via the blood center's editors, and we became like brothers. In fact he called me "Bubba" which he said means brother. His last words to me in his Dec. 2nd letter were:
"I wish good health and happiness and fellowship to you. Please stay in touch with me, I am sorry that I was late in getting back to you. However, I hope you understand. Again, we appreciate so much what you have done for me and my family. This is your blood brother "Bubba" signing off for now. Stay in touch! Thank you!"
I hope his family decides to contact me someday. I would love to learn more about what a great man Robert was. I released my personal information to them, but understand that they are grieving now.
I've received hundreds of very kind responses from all over the world. I just hope I've been able to help others as a result of my experience. A number of readers have gone out and were tested as a direct result of experiencing my story with me. That's a great feeling. I was also able to help many more who have successfully matched. Sort of a self-proclaimed BMT donor Internet guru. Always happy to help. This has become the living legacy of my experience.
It was a strange, yet wonderful situation to be in. When marrow donors get wrapped up in this whole process of donation, we prepare ourselves to carry this emotional baggage of being part of a life or death struggle for someone we may not even know. I guess one is never fully prepared for the worst, though.
Yeah, it hurts like hell, but yes, I'd do it again. I'd DEFINITELY do it again. In the meantime, I'm a regular blood donor now. I just hit the first gallon point, and will continue to donate blood until my marrow numbers come up again. I donate blood in memory of Robert. May he rest in eternal peace.
Don't let Robert's death discourage you. The NMDP says about 40-60% survive the procedure. Better odds than a sure death sentence for these people who need it.
I encourage you to help, and talk others into helping too. Imagine, YOU could possibly affect the future by helping to keep someone on this earth longer! GOOD THINGS CAN HAPPEN!
As I've said before, this person, if he or she were to survive with your help, could literally be the one who cures cancer, or possibly saves the earth from doomsday. Maybe though, you may just extend the joy of a very common person's kids or grandkids ... hopping on your recipient's lap, or sharing those great big hugs! Who knows? You could be a part of a VERY wonderful thing!
SHARE YOUR HEALTH!
God Bless You.
Also see Addendum.