Bone Marrow Donation:

A Donor's Journal

Journal
Costs
Recreation
Why Marrow Donation?
Update

Personal Testimony: not meant for the worldly minded.

April, 1999

The story begins, oddly enough, in Saudi Arabia.  In the spring of 1999 I was briefly stationed at Eskan Village.  The clinic staff ran a campaign to get people to sign up for the Department of Defense Marrow Donor Program.  It seemed a reasonable thing to do, and after giving up a vial of blood and signing a few forms, I became part of the registry.  (For more information, see my page on Bone Marrow Donation, or check out marrow.org.)

February - March, 2003

In February of 2003, a whole four years later, I received a phone call from Ms. Nora Carden of the DoD Marrow Donor Program.  She informed me I was one of a group of people who were preliminary matches for a person in need of a bone marrow transplant.  Since I was by this time stationed overseas, they set up a March 13, 2003 appointment for me to have additional blood drawn at the local U.S. Navy hospital in Naples, Italy.  The blood was then sent via FedEx to the states.

March, 2003

On March 25th, (less than two weeks later,) I was contacted by Mr. Mark Sandifer, the Senior Administrative Coordinator for the C.W. Bill Young/DoD Marrow Donor Center.  He informed me that I was the most likely candidate, and gave me a choice of several dates in early May for my donation to take place.  They would need to see me a couple weeks prior to the donation date for some testing, and would keep me there until my donation.

Unfortunately, I had a previously scheduled business trip during that time frame, (a TDY/TAD, for you military folk.)  This was entirely discretionary and I was willing to put it off, but they were good enough to schedule around it.  They scheduled a week long trip to Washington D.C. from 6 - 12 April for medical testing and blood donation, then another shorter trip from 6 - 11 May for the actual bone marrow donation.  This was fine with me. 

April, 2003

The National Marrow Donor Program had a bit of trouble arranging my itinerary.  Naples, Italy isn't exactly one of the European hot spots, and it wasn't possible to arrange for an e-ticket.  They finally had to procure a prepaid ticket.  I showed up at the ticket counter on the 6th of April, picked up the ticket, and many hours later arrived in Washington D.C.  A driver, (Omar,) was waiting for me with a big Lincoln Continental limo.  He took me directly to the Leavy Conference Center, which is part of Georgetown University and is directly across from Georgetown University Medical Center, which is where the bone marrow donation takes place.

7 April

On 7 April I began my testing.  They drew a few vials of blood and a urine sample for further testing, then sent me to the blood bank to give my first pint of blood.  Bone marrow donation, if you don't know, involves the removal of about a quart of bone marrow.  They remove a couple pints of blood from you before the procedure so that after your donation they can return the blood back to you.  The process is called autologous donation.  While the marrow regenerates, the extra couple of pints helps your body compensate and keeps you from becoming anemic.  

8 April

Today was the day of my physical exam.  First they took a chest x-ray, then they performed an EKG, and then they gave me a bunch of forms to fill out.  (Among the forms were two menu options---apparently they give you and your significant other a gourmet meal the night before your marrow donation.   I chose the chicken for my wife and the filet mignon for me.) 

The marrow donation program uses one of four doctors to perform the marrow harvesting.  Dr. Tamarro Taylor, (I call her T squared,) performed the rest of my physical exam.  She asked a number of health and lifestyle questions, did the typical eyes/ears/throat exam, listened to my lungs and my heart, did a couple things to check for coordination, etc.  Finally I had to give another urine sample, as mine from the previous day was somehow contaminated, and I had to give few more vials of blood. 

The blood testing had to be redone since it had to be within 30 days of the marrow harvesting procedure.  I didn't follow the explanation of why they did it on the 7th if they were only going to redo it the next day.  Something to do with procedures, I suppose.

One of the nice benefits of all this is the reassurance that you are basically healthy.  The procedures and tests performed would normally cost you and your insurance company a small fortune, and are therefore rarely done.  In the Air Force physicals are much more perfunctory than they used to be, often consisting of little more than filling out a health analysis questionnaire.  After this process I know my heart is good, my blood is good, my chest is clear, etc. 

10 April

Something quite odd happened today.  I was called by Sandra from Stars & Stripes.  My initial thought was that my subscription was about to run out, but it turns out they wanted to do a story on me donating my bone marrow.  I arranged for them to meet my doctor and also the nurse coordinator of the bone marrow transplantation center at Georgetown University Medical Center.  We met at 1300, (1:00 PM for you civilians,) and discussed the procedures, personal histories, etc.   (The article ran in the 17 April Stars & Stripes.  You can find it here.)

I'm a little surprised by the interest.  This seems like a natural thing to me---why wouldn't I donate?  And wouldn't anyone, given the chance?  But then I realized not everyone has the chance.  It just happened that I was at Eskan Village in Saudi Arabia when they ran a bone marrow drive.  Had I not been in Saudi Arabia at that time, I would not have had the opportunity to be in the registry.  Had I not been in the registry, then the patient I'm donating for would have to rely on a donor whose marrow was less of a match, posing more of a risk.  It is just another sign of providence at work. 

So the question is, why don't the military treatment facilities run bone marrow registration drives more often?  People are busy and sometimes need a little nudge to do the right thing.  Perhaps I'll work with the DoD Bone Marrow Program and the military hospital in Naples to have a bone marrow registration drive there.  Seems like a good community service project, one that would make an actual difference in peoples lives.  It would be a natural extension to what I'm doing now.

11 April

Today I was scheduled to give another autologous blood donation.  I somehow got the time wrong and showed up to the Red Cross donation center at 09:00 AM instead of 2:00 PM.  They were good enough to take me anyway.  The nurses name was Yvette Washington, and she was really great---the polar opposite of my experience on Monday. 

Ms. Washington told me quite a number of people decide not to donate.  Perhaps that explains why everyone seems to be bending over backwards for me.  I can understand a person not donating because the timing  is bad for them, but still---if you are the best match, then your marrow is that person's best chance at survival.  To not donate means you are decreasing the chances the patient will survive.  Ms. Washington told me a number of people register because they are pressured into it by friends and employers, but have no intention of actually donating when the time comes. 

12 April

Today is my travel day.  Unfortunately I don't know what arrangements were made for me to get to the airport, and calls to the company I thought had picked me up indicated they weren't sending anyone.  I called the DoD Donor Center, but they were closed for the weekend.  I paged the donor coordinator I'd been dealing with, only he didn't answer his page.  I ended up sharing a cab to the airport with a doctor.

We had an interesting conversation.  The doctor was a brain surgeon from San Francisco who had been attending a conference at Georgetown.  He was interested in bone marrow donation, and I was interested in brain surgery.  Several years ago I had come up with an idea for dealing with brain tumors using multiple microwave transmitters.  He told me they actually use the exact idea, only using x-rays instead of microwaves.  He also told me about a Really Cool Thing.  They can implant a metal pellet under the skull, then steer it using magnetic fields to a precise location in the brain.  What good is that?  They haven't figured that out yet.

At the check in counter they had trouble checking my bags through to Naples.  He tried several times, and each time had to retrieve my luggage from the baggage conveyor.  He finally figured out the flight from Paris to Naples had been cancelled.  Its a good thing he retrieved my luggage, because otherwise my luggage wouldn't have shown up in Naples for a couple days.  He ended up putting me on a Meridiana flight that left Paris at 8:30 PM on the 13th. 

13 April

I got in to Paris about 6:00 AM and had to cool my heels for 14 and a half hours.  This was not easy.  The Charles DeGaulle airport has no lockers into which I could put my carry-on luggage, so I had to haul it around with me everywhere.  Because it was Sunday, not all the restaurants were open.  And because it was an airport, and because it was Paris, everything was expensive.  Water, for example, was 3.50, with no water fountains anywhere.

But I must say the stereotype about the arrogant and Francophile French wasn't true.  People were quite nice; the book and magazine stores sold things in multiple languages, including English.  Contrast this with the Waldenbooks in the international terminal at the Dulles airport, a bookstore selling exclusively English language books, magazines and newspapers.  So who ends up being more arrogant and insular---the French or the Americans?

Now for a word of warning.  If you are ever told your flight at the DeGaulle airport will be out of Terminal 3, run away.  What a nasty festering pustule of a place that was.  Imagine several hundred people from multiple countries all crammed together into a place too small for them, and with too few services.  I took a quick look inside and decided I was not going to spend 14 hours in close contact with 500 disease vectors.  I hopped back on the bus and hightailed it back to the main terminal.

Around 6:40 they opened the ticket counters for checking in people.  30 minutes later they still hadn't checked even one person in.  Computers were down, printers didn't work, etc.  It was so bad the plane took off late. 

I had only slept about four hours on the flight across the Atlantic.  That plus a catnap on the grass outside Terminal 3 was all the sleep I'd had in the last day, so I was looking forward to a little sleep on the airplane.  What I hadn't counted on was being seated next to a noisy Neapolitan woman.  She felt compelled to talk non-stop for the entire two and a half hour flight from Paris to Naples.  But she didn't just talk to the woman next to her.  That would have been too easy to ignore.  No, she had to talk to the people in front of her, behind her, across the aisle from her, etc.  Since aircraft are noisy places, this means she spent a good deal of time shouting in my ear.  I was in quite the mood when we landed.  My first thought when I got off the airplane was, "It sucks to be back."

On a more positive note, my boss gave me Monday off.  Yeah, boss!

6 May

Time to travel back to Georgetown for the actual donation.  This time the travel was on Lufthansa airlines.  Since the program encourages donors to bring someone with them, I brought my wife, Susanna. We left Naples, transferred to United at Munich, then ended up back at Dulles airport.

While we were in Naples, a German warned us about the security at German airports.  He was right.  First, Germans have a lot of security people and equipment, so you don't have the long lines we saw at U.S. airports.  Second, they are very thorough.  Everything goes through the x-ray machines.  Shoes.  Wallets.  Electronic devices.  Then they wand you.  The wand isn't waved around your body like someone doing an aural cleansing---no, the wand is pressed against the body and drawn up, down, and around.  The only way they could have been more thorough is with a colonoscopy.  Unlike in the U.S., this security check is for everyone, not for a select few.  When done this way, security can't be subject to accusations of racial profiling.

At Dulles we were once again met by a limo driver who took us directly to the Leavy Conference Center.  This made it so easy that I'm thinking I'll request this service for myself whenever I travel.  The cost is less than a taxi, and is less trouble than a rental car.

8 May

We had to be at the hospital at 06:00 AM.  The pre-op appointments went quickly, and soon it was time.  The anesthesiologist had recommended general anesthetic, and I got my first dose of the "cocktail" as soon as I got on the gurney.  The next thing I remember was waking up in the recovery room.  I was pretty groggy until that evening.  As the general anesthesia wore off, they gave me Percocet.  I wasn't awake much, which was kind of nice.

9 May

Today I got up, took a shower, and pealed off the pressure bandage.  The bruising was quite impressive.  The nurse put a lighter dressing on, I got my prescriptions, and was sent back to the hotel.  That afternoon I noticed one of the incisions had begun seeping a bit, so I went back and they put another pressure bandage on it.  The Percocet ensured this was a wasted day, and that I was awake only for a couple hours at a time.

Susanna told me that Sandra from Stars & Stripes called, but I was really too out of it to return her phone calls.  In fact, I ended up leaving for Italy without ever returning her call.  It might have made a nice follow-up, but I guess I wasn't up to it.  Besides, what else could I have told them that I hadn't said before?  How about "Ouuuch!"

10 May

Today I had the second pressure bandage taken off and the incision inspected again.  The actual incision is quite small, but the floral bruising on my left hip is spectacular in scope.  Today I tapered of of the Percocet.  I started out with one Percocet and one Tylenol, but that made me a little too foggy.  Although I don't care much for pain, I care even less for the loss of mental acuity that pain medication gives me.

Since the grill isn't open weekends, we ate at the Hoya Restaurant/Faculty Club.  The price is quite high, although probably within reason for a buffet style meal.  I didn't enjoy it too much, but perhaps that had less to do with the food and more to do with the Percocet.

Susanna wanted to see the Pentagon City mall,  and Dr. Taylor had advised that I be up and around.  Finals week at Georgetown was over, and the Georgetown University Transportation Shuttle wasn't running anymore.  We took a taxi to Rosslyn Center, (less than $10 with tip,) then took the Metro to Pentagon City.  Later I found out the Georgetown bus system, (called the Georgetown Metro Connection,) costs only 50 and runs straight to Rosslyn center.

When I got back to the hotel I decided to check our account.  We still haven't been reimbursed from the first trip, and the expenses from this trip are adding up.  I previously mentioned the problem with per diem, so I won't go into it again here, but this really entails the donor to front a substantial amount of money.  Eventually it all works out, but in the interim...

11 May

Today we leave to go back to Europe.  Since our flight is in the evening, we arranged for a late checkout so we can stay until 2:00 PM.  Once again the only place to eat is the Hoya's Restaurant.  The breakfast buffet seemed much better today, so my problem yesterday was due to the drugs I was on, not because of the food.

We're packing up our stuff and getting our carry on luggage ready.  I've got to make sure to take some extra bandages in case the incisions start seeping again.  The hospital also gave me some Sta-Dry ice packs to help with the swelling; it also helps with the pain.  I'll be taking one of the larger ones with me, as all the running around from the hotel to the airport is bound to aggravate the area.

The hospital wrote a letter to the airlines requesting they make some accommodations for us.  The plane was overbooked, and so we still ended up in economy.  United has taken several rows of seats out to create extra leg room, so economy was actually sufficient.  The problem was that United was short of ice.  At the start of the flight.  I ended up with an icepack only half full.  I don't know how I would have made it without Percocet.

The Munich airport was much the same, except the security procedures were much less.  Flying into the U.S. is a much more onerous process than flying almost anywhere else.  But Germany, like most of Europe, had no ice; I was unable to refill my icepack.  The Air Dolomiti flight to Naples was uneventful, but by the time it was over my butt was both sore and numb.  How exactly does that work?

By the time we got to our truck, it was about 11:30 AM.  I called in to work to see if it was worth running by on the way home to drop off paperwork for convalescent leave.  The young sergeant who answered the phone, even though he was the leave clerk, had no idea how the process worked.  Rather than risk sitting around for a couple hours waiting for him to figure it out, I decided to give the paperwork to my boss that evening and see if he would take care of it.

12-18 May

Convalescence has gone well.  The mental fog lifted about a week after the procedure, and I was able to resume my schoolwork.  I returned to work eight days after the procedure; since my job is pretty much light duty anyway, I didn't have to ask for any sort of duty profile.  I'm still get a little tired now and again, especially if I miss meals.  I try to get out and walk a couple times a day, although I can't walk as far as I would like.  Still, every day is a little better than the day before, and I'm sure I'll be running twenty minute miles before you know it.

Journal
Costs
Recreation
Why Marrow Donation?
Update

Personal Testimony: not meant for the worldly minded.