Latest Update - October 2003 - at the end.....
Howdy,
My name is Bob, and I'm one of the lucky few who's managed to be called as a bone marrow donor, not once, but twice. It's quite possibly the best thing that has ever happened. I'd like to share with you a few excerpts from my experiences as a short 'diary' that I put together over the course of the last 10 years.
If you read this and decide you'd like to know more, send me some email!
December 1983
I help a friend buy an MS-DOS compatible. He writes software to do HLA typing that was used by the local ARC for a few years. He talks to me about pherisis donation.
September 1986
While signing up for apheris blood donation down at the Albany Red Cross, the Bone Marrow coordinator stopped by and asked if I'd like to find out more about the Marrow Registry. "We'll probably never call you". I take a look at the video tape, sign up, and forget about it.
I'm in my office at Supercomputer Systems Inc. in Eau Claire, Wisconsin. I've moved to the Midwest from Albany, N.Y. to build big, fast computers. But I've kept Dawn, the Bone Marrow Coordinator in Albany up-to-date on my whereabouts. I still donate apheris when I'm in town, about once every 6-8 weeks. I'm expecting to stop in over Thanksgiving break to donate, so a call from the ARC is no big surprise...
"Are you sitting down?" Dawn asks. The tremor in her voice gives away the surprise. I'm stunned. She tells me that I'm a preliminary match for a patient and she'd like to arrange for me to get the secondary typing done. We work out the arrangements. I'll have to go to St. Paul to be tested. She gets together with the other coordinator and we set up a date.
I sit in my office for a minute or two, then rush across the hall to tell the other aphersis donor I know. We spend the rest of the afternoon talking about it.
I drive over to the ARC in St. Paul for typing, a trip of about 95 miles one way. I've been there once to donate aphersis. I meet Cindy, the St. Paul coordinator, who's taking over. Dawn is disapponted, but still happy. Cindy takes a few vials of blood for typing, tells me that it will be 8-10 weeks before I know. She gives me a survey, answers a question or two, and sends me back on the road to work.
I call Cindy for the Nth time. She's gotta be getting tired of this. But this time she has the results. 6 out of 6. A perfect match. I get asked if I want to do this. "Yes!" is the immediate answer. We set up a date for another get together, this time for a physical, and, of course, more bloodwork.
I spend the next few weeks trying not to get hit by a bus....
I go in for a 'Fog the mirror' physical. I meet and talk to the surgeon and my doctor. All is well. I get asked if I want to do this. "Yes!" is the immediate answer, again. I get another survey, get in the car, and cruise back to the office, 90 minutes of crushing boredom.
We set up a date for the surgery. I get a video tape in the mail, another consent form, and another survey. I get asked if I want to do this. "Yes!" is the immediate answer, again.
I'm in on the 17th of April. I find out more about the patient. He's a 21 year old computer science student somewhere in N. America with Cronic Mylogenous Leukemia. The odds are very good. I donate 3 units of my own blood for the proceedure.
I spend the next 5 weeks actively trying not to get hit by a bus. I pass on going to the first race of the season. ( I race cars in my spare time...)
The office tells me to take as much time off as I need...I later find out my boss's wife was on the list for a liver transplant.
I pick up Mom @ the airport. Jeff, a roomate from college, flies in as well. We go over to St. Paul and have a dinner that can't be beat. I'm supposed to be going in at 5:30 Thursday morning. Nothing to eat after midnight. I discover that I can write a letter to go with the marrow.
Sleep? What's that? I stay up writing one of my famous graph paper letters, munching on Freihoffer chocolate chip cookies, that Jeff has brought. A glance at the clock reveals that it is 11:58, still time for more cookies! I stuff a few more in, finish up and go to bed.
I now know why they get you up so early for surgery. If you die, it will feel better. :-}
We go over to the hospital, a couple of blocks away, go through registration, and get wheeled up to a room to change into The Gown. God, I hate those things.
After freezing in the room for what seems like forever, they come for me. We trundle on down to pre-op, I say so long to Mom & Jeff, and off we go.
Pre-Op is chilly. But they plunk me into a gurney and leave me. Out of sheer boredom I read my chart. Really Bored. Finally, the team stops by and introduces themselves. Doctors, interns, nurses, anethesiologist. Woof.
Someone stops by to stick an IV in my hand. A short while later the anesthesiologist stops by. "You look a little nervous. Why don't we give you something to take the edge off." I look at him like he has two heads. My pulse is down around 62, resps about 11. "What are you talikng about, I'm *bored*...." "No, I think you look nervous" he replies with a smile. Then I get it. "Come to think of it, I am feeling a little anxious..." He makes a note on the chart and motions the nurse over. I look at the clock across the room. 8:26am. 3mg of Versed go into the IV. "You mean I won't remember anything after about now..."
April 17th, 1991, 1:28pm
There is a bright light shining in my eye. Ooook. "waaaterrr" I manage to croak. A kind nurse slips me a tube of water. Conciousness returns. I'm feeling kinda fuzzy, and it feels like I'm lying on a pillow. No pain, just fuzzy.
They wheel me up to my room. A different room. Hmm. I'm in the Pediatric ward. Kinda off for a 29year old, but who am I to 2nd guess the better wisdom of the medical community? My roomie is a 13 year old going through chemo. Yuk. Glad I'm not on the other end of this proceedure.
A rapid parade of guests wanders through. The doctor, a nurse or two, Cindy, and the marrow coordinator from Vancouver, where the marrow is headed. We exchange pleasantries, and I drift back to sleep.
I wake up about 4:00pm. The back is a dull ache. The head hurts. I'm dehydrated. They took 1600CC's of marrow. They decide to keep me overnight for observation, pumping 3000 ml of saline into me through the night.
April 18th, 1991, 6:30am
I'm awakened after a night of getting up to go to the bathroom every hour (which with an IV pump is a neat trick...) by a small child on a Big Wheel outside my door. As those who've seen me before noon will attest, I'm not a morning person....I ask for the doctor to to remove the IV. He'll stop by soon I'm told. I threaten to take it out myself an hour later. The nurse decides I'm feeling better...
I'm Free! They decide that I'm fine and can go home. I pile into the back seat of the car and head east. Jeff and Mom fuss. I stop into work to pick up my mail and let the crew know I'm fine. Just don't ask me to tie my shoes.
I'm sore and stiff, but the bandage comes off and is replaced by the only bandaids we have in the house. Snoopy Strips...Looks like I've got some blisters around the steri-strips used to close the incision. Hmmm. Alergic reaction. Off those come as well.
Mom & Jeff go home on Sunday. I go back to work on Monday. On Friday, I get on a plane and go back to Troy to a closing night Player's party. I dance, sing, and jump off the stage as I always do. Life has returned to normal.
I get a letter from Cindy. She's got a letter from my recipient. He's doing Very Well. She sends it over. Though he's got my allergies. Not something I'd wish on my worst enemy. To top it all off he loves peanut butter, the worst of my allergies...Oh well. Small Price.
I get the letter. It's not one, but three, one from Mark, one from his mother, and one from his girlfriend, Ann. The cooincidences are striking. As a long-time internet guy, I consider trying to sneak my address onto the back of a card, but I refrain. We pass a few notes back and forth through the ARC.
August, 1992
I'm asked to be the donor representative at the NMDP annual convention. I'm really honored. I speak to 400+ doctors, marrow center coordinators. First time I've been nervous in front of an audience in years. I screw it up once, but all in all, it was pretty good. When you get 400 folks quiet and listening it gets kinda neat. I got to go to the conferences and learn all about the internal workings of the process. It was really cool.
April 17th, 1992
I've moved back to Albany, my supercomputer days over. We built the fastest computer in the world. At least for a few months...
I call the ARC. Time to get in touch, a year has passed. All reports are that Mark is doing super. I get his name and number from the ARC. Winnipeg. Hmmm.
I call from my office. I've got the shakes. He answers. I ruin his studying for finals...We laugh, chat some more. I talk to his Mom as well. It is amazing. I don't really know what to say, but we stumble through it. I feel great.
July 1993.
I get a call from my housemate Jeff (the same Jeff who flew out to Minneapolis) while over at my girlfriend's. There's a message on the anwering machine. He thinks it might be urgent. He plays it for me. It's Dawn with that nervous tremor. I call her right away, afraid Mark has relapsed. Nope, another match, can I come down for some more tests...
This time it's a Acute Mylogenous Leukemia patient. The odds are not nearly as good. But I'm up for it. I go through the testing, make a run to Rochester for a physical. I'm an old hand at this now, and answer most of the questions before they've asked them. Yup, I want to do this. Again.
Since it's AML this time, we get a short OR date. The weekend before Labor day.
Late August 1993.
Mom & Dad pick me up and we drive to Rochester. I check in @ the hospital. They're going to admit me the night before, and let me sleep in the hospital. We go out fo a dinner that can't be beat. I check in and sleep well. They wake me up @ 6:00 this time. Wow. I got to sleep in.
The crew (Mom, Dad, Jeff, & Dawn) stop in about 7:30 for a last minute pep talk. We chat, the nurse comes to take me away.
Pre-Op all over again. Boredom sets in. The OR crew talks about what's going to happen, and I narrate the last time for them. The anesthetic isn't quite as strong this time. I remember being wheeled into OR and having a mask put on.
I wake up in pre-op. The extraction is done. About an hour. I'm stiff and sore and fuzzy feeling again, but ready to do it again. Dawn is in checking up on me. All is well. By 11:30 I'm back in my room. I sit up and eat lunch. By 1:30 they take the IV out of my arm. I'm a very happy camper. They've stiched me up rather than steri-strips this time. The change my bandage about 4:00 to small gauze pads. At 4:30 I'm on the street again. We go to dinner at a seriously fancy resturaunt down the street from the hospital. Jacket kinda place. They make an exception for me in my sweatpants on account of the circumstances. We stay in a hotel and head home the next morning.
I'm sore, kinda like having taken a bad fall on the ice. But by Saturday night, I'm back to my normal old self. I lace up the tennies on sunday, jump into my car, and head over to drive in a race. I loose, but it was a good weekend nonetheless.
The Outcome
I got a call from Dawn a few weeks later. She'd like me to come down to the ARC to get my donor pin. We set up an appointment that coincides with a pherisis donation two days later.
I arrive, donate, and meet up with Dawn. She's got my pin. It looks like a standard marrow donor pin, except that it has a sapphire set in it. It's really pretty. She tells me that there are less than 35 in existance. It is a special pin for two time donors. It's really touching. She also has a letter from the president of the ARC. I'm really impressed. I go through a little pain and get all this attention. Wow. :-}
Unfortunately she has other news. the recipient did not make it. Secondary infection set in with predictable results. She's also leaving the NMDP and the ARC to go work in the real world. We talk a bit, cry a bit, and celebrate the wonder of it all. I'm still beating the odds with a 50% survival rate.
August, 1994, - The Wedding
By this point, I've changed jobs again, but still live in Albany, and trade e-mail with my first recipient on occasion. I hear he's getting married to Ann, and we get an invitation to the wedding. I talk to my fiancee, and we decide that we can't not go...So we book a few plane tickets to Winnipeg.
We arrive late. Very Late. But there Mark is at the airport, waiting for us. He takes us down to his Mom's house where we spent an hour or two talking with Mark and his mom. It was amazing. At 1:30am we finally wind down and head over to the hotel to crash.
The next day, we load up on the bus chartered to take the wedding guests to the church. We know noone, and are rather anonymous ourselves. But we get a good feeling when the older folks on the bus start batting ballons around. We join in, still unknown to all, trying to stay that way. It's Mark & Ann's day and we don't want to detract from that. We take a seat at the church, and watch a stunning wedding.
We finally met Ann in the receiving line. It was pretty emotional. As was meeting the rest of the relatives. The party, well, Mark & Ann put us with some of their college friends. Let's just say that one American engineer and his engineer-type finacee blended in with six Canadian type engineering couples. We even sang the Engineer's song to the wedded couple, beer in hand. The cameras placed on the table have pictures of us dancing with the kitchen help, the bride of the wedding next door, etc. We fit right in...
Kristen and I had debated long about a wedding present. I'm horrid at such things. We however, settled on the Bride and Groom bears from the Vermont Teddy Bear Company, hoping that they'd like them, worried though, not knowing their likes. The last coinicence was that Ann collects bears...
I arrived home after a long business trip. The house is cold and dark. The mail is stacked on the kitchen counter. Much has changed since I wrote that last entry. I live alone now, work on one coast, live on the other. But I still wear my NMDP pin proudly on any available occasion.
I turn on the heat, the lights and grab some food and a soda from the 'fridge. Time to go through the mail, as I do about twice a month, tossing out the junk and setting the bills aside to deal with in the morning. It is a now well established routine. Goes well on a late thursday night after a long plane flight.
And there in the pile is an envelope with American Red Cross as the return address. It doesn't have the hint of junk mail to it. I look across the room to the answering machine. Nope, no blinking light. Must just be time for a donor dinner or something. Open the envelope.
And sit there for a good 5 minutes reading it and re-reading it. And looking at the clock. It is too late to call the number. I call anyway and leave a message on the voicemail.
Yes, of course I'd be delighted to come down and give blood for a secondary typing. I spend half the night worrying that I wouldn't be allowed to donate a third time...
The phone rings the next afternoon. We try to set up a good time for the typing. My travel schedule means we may have to do it in Minneapolis of all places. I talk to Sue about it being a third donation, and she confirms I'm eligible. This is sooo cool!
I head to Mineapolis for the 53rd IETF meeting, which I really need to be at. Halfway through a meeting I get a call. It's Sue. Looks like they have not one but two other potential matches for the patient, so they don't need me. I'm disssapointed of course, but very relieved that the patient has several options. I thank sue, and go back to being a mundane again. But with a goofy grin at the oddest times.
August 2003 - The latest installment.
Back to living in the house I own in Troy. No mor flying back and forth across the world. Have not been in a plane since March. Kinda nice... The answering machine is blinking. I wade through the mail as it plays. A message from Sharon at the Marrow Center in Rochester, N.Y. Call Please. I figure it's a donor dinner or something similar....
BZZZT.....Wrong. Matched again....
Turns out it is the same match as back in October of 2002. They didn't do the transplant back then for unspecified reasons. Can I come in for confirmatory testing? Of course. We set up an appt for early Sept (about 5 days ). Wander over, give a few tubes of blood, go back to work.
Ran into old marrow donor friends @ a Walk for Leukemia last week. Was nice to see 'em.
Called the Marrow Coordinator. No resolution yet. I hate waiting. I'm no good at it. Just a matter of time though....
Please Register!
As a marrow donor, I can honestly say it is the most rewarding thing I've ever been through. Through little effort I've managed to give someone a chance to graduate from college, get married, and go on with life. And almost anyone can do it. If you can, please do. You'll probably never get called....
To Bone Marrow Resource Foundation Page
To National Marrow Donor Program Page
I get alot of comments about this diary / site. The feedback is more than welcome. I hope it inspires you and makes you smile.
One of the comments I oftern get is on the writing style. I try to write like I talk. I'm told I mostly succeed. If I do, it isn't of my doing. I have years of english teachers to thank for putting up with my hack prose. And I have to thank years worth of librarians for pointing me at books worth reading. Especially, my own librarian-mother, who never failed to bring home books for her kids to read. Thanks mom and dad for the genes and the books!