This is the original writeup that I wrote within days of my first donation:

Spring 2004

Dear Friends,

thank you for your phone calls and emails during my recent "bone marrow" donation -- it really meant a lot to Jane and me. (To be accurate, what I did is called a "PBSC" stem cell donation -- see below.)

Many of you have asked for details, so I thought I'd write down what I remember while everything is still fresh in my mind.

Even though the donation procedure really wasn't a big deal, the experience has made a profound impression on me. It is easy to take your own good health for granted without realizing what an awesome blessing that is. Spending a couple of days in and around the Stanford Cancer Center helped me put things in perspective.

Maybe this note even inspires some of you to consider registering with the NMDP (National Marrow Donor Program): http://www.marrow.org/

Before you register, please think through your decision carefully -- you may be a match tomorrow! Don't put yourself into the position of having to say "no" when you find out that you're a match. There are perfectly legitimate reasons for not donating, e.g., you're pregnant, or trying to become pregnant, or are older than 60. Of course, nobody can force you to donate even if you are registered, but I would find it very difficult to decline if someone's life depended on it. My advice is to not register at all unless you are 100% sure that you will donate if asked. There are other things you can do to help, like donating blood, or supporting the Leukemia and Lymphoma Society (www.leukemia.org). Or at the very least, take a moment to reflect on how fortunate you are in life, and tell the ones you love how you feel about them.

Having said that, the whole procedure was really no big deal, at least not physically. If you've ever had a moderate case of the flu, and have had a Tetanus shot, and have sat on a plane for about 4 hours, you can absolutely handle donating stem cells.

(If you only care about the actual donation, skip to "Nuts and Bolts" below.)

Background

(Doctors: please don't cringe at my gross oversimplifications. This is not a medical journal article, and I’m not a doctor.)

First things first: the whole point of a "bone marrow transplant" (BMT) is to treat cancers of the blood (leukemia) and related diseases. Leukemia patients need to have their bone marrow replaced with healthy cells that match their own bodies, usually donated by family members or volunteers who are registered in the NMDP database. Matches are much more likely in people with your own ethnic background (or mix of backgrounds).

BMTs used to involve getting healthy bone marrow from a donor's hip/pelvis in a small operation, and then infusing that bone marrow into the recipient. The doctors are REALLY after the stem cells that live inside the bone marrow, not the marrow itself.

In recent years, drugs have been developed that can cause a donor's marrow to produce lots and lots of these stem cells and kick them out into the blood stream. These cells are called "Peripheral Blood Stem Cells", or PBSC, and can be collected pretty easily using a process called "apheresis," in which your blood is pulled out of one arm, run through a machine, and returned into the other arm.

This is the type of donation I did, and it seems to me that PBSC donations are starting to replace "traditional" bone marrow donations.

My Story

I registered as a donor with the NMDP in early 1999 after a friend of mine was diagnosed with leukemia.

In Spring of 2003, Diane, the Stanford Blood Center's NMDP coordinator, called to tell me that I was a Stage 2 match for a young woman. She asked if I would come in for Stage 3 "confirmatory testing". Of course, I agreed.

A couple of weeks later, Diane called to say that I was indeed a match, and that the recipient's doctors were considering me as a possible donor, would I consider donating via a PBSC donation? Whoa! Major reality check! I remember feeling a huge sense of responsibility, and I drove home more carefully than usual that evening. All of a sudden, someone was *really* depending on me.

Diane explained to me that before I made my decision, I would have the chance to talk to a doctor about the procedure. She also explained that in the NMDP, my donor center (Stanford) represents only my interests, and that the doctors at Stanford would not clear me to donate if they thought it posed any risk to me.

So in Summer 2003, Jane and I met with a doctor who explained the procedure and answered all our questions. I went to the Stanford University Medical Center to have blood tests for infectious diseases, an EKG, and chest X-Rays. The results showed that I was healthy, and eventually word came back from the recipient's Transplant Center that they wanted me to be the donor!

I was getting pretty excited, but at the same time, didn't want to make a big deal about it, so Jane and I picked a code name for the recipient: "Jackie". Whenever we talked about the donation, we'd refer to it as "the Jackie thing."

After some back and forth, the donation dates were set for sometime later that summer.

Then, with less than 2 weeks to go, the donation was canceled. Not delayed -- canceled.

Due to NMDP rules, we couldn't find out why, but Diane said that when transplants are outright canceled, that's usually *really* bad news. I assumed that the recipient had died, and I was more than a little surprised at how sad that made me feel. I didn't even know this person, but I grieved for her as if she had been a family member. Honestly, that was really tough sometimes, even as recently as this past Christmas (2003).

And then, out of the blue, Diane called in early 2004 informing me that the same patient had changed her mind -- her doctors wanted to do the transplant again. She is alive! I was overjoyed.

Because my first checkup was more than 6 months ago, I had to do the blood tests, EKG, and chest X-Rays again, and of course, everything turned out fine. The EKG nurse saw the word "donor" on my paperwork, and asked me if I was donating a kidney -- that gave me a chance to see the EKG in action, with my pulse going up pretty fast. :)

The donation date was set for Spring 2004.

The actual transplant date has been postponed again, but our baby is officially due on April 4, 2004, and realistically could come any time between now and then. Diane worked out a solution where I would donate on the original date, and the cells would be frozen until the transplant. This doesn't degrade the cells in any way.

The NMDP rules do not permit direct contact between donor and recipient, but I may be able to get periodic updates on the recipient's progress. One year after the transplant, we may be able to contact each other directly if both sides agree to release their information to the other person.

Which brings me to the details of the whole procedure.

Nuts and Bolts

The PBSC procedure is described at www.marrow.org.

Basically, you get shots of Neupogen for 5 days, which stimulates your bone marrow to make stem cells and flush them into the bloodstream. After the 5 days, these cells are collected by running your blood through an "apheresis" machine. Your blood is drawn through a needle from one arm into the machine, which takes out the stem cells, and returns the rest into your other arm. The whole thing takes 2 days, 4 hours each day.

Pre-Donation Preparation

One Friday in Spring 2004, Jane and I went to the apheresis unit in the brand new Stanford Cancer Center. The room is home to 6 treatment chairs, and several other patients were there that day. One man was donating stem cells for his sister. Several others appeared to be patients undergoing treatment themselves.

A nurse weighed me, took my temperature, blood pressure, and pulse, asked me a bunch of health-related questions, and drew some blood so they had a pre-donation baseline of my blood before any Neupogen shots.

Then, it was time for the Neupogen injections: 2 syringes contained a total of 780mg Neupogen in 2.6ml -- 1.6 ml in one, and 1.0 ml in the other. I had 3 choices for where to get the shots: the leg (“most painful”), the arm (“medium”),  and the belly (“least painful”). I figured the nurse knows what she is talking about, and decided to try the least painful site -- the belly.

Honestly, it was *really* no big deal! If you ever need to get a bunch of shots, and the belly is an option, I'd say go for it. I know I will. After sitting there for another 15 minutes to make sure the drug didn't have any bad effects on me, I went to work.

For the next 4 days, I went in every morning to get my 2 Neupogen shots. Each time, the nurse asked me questions to figure out what effect the drug had on me that day. The questions were basically along the lines of "do your bones hurt? Do your muscles hurt? If so, which ones? Do you have headaches?"

For the first 2 1/2 days, I really didn't feel much different, but by Sunday afternoon (3rd day of Neupogen shots), I was starting to feel a little achy in the bones (especially my lower back and neck), and in the muscles, and I was having headaches. The pain can best be described as a “pulsing” pain in my lower back, pelvis, head, and sternum, especially during “strenuous” activity -- which on day 3 included things like getting up from the couch. Jane told me that I was also irritable -- which I know couldn't possibly have been true.  :)  Tylenol took care of all that, though.

The "low" point was probably Monday evening, after my 4th day of Neupogen shots. My marrow must have just been cranking out stem cells in overdrive, because the pressure they were creating was giving me bone, muscle and headaches. In the grand scheme of things, though, this was still no big deal -- and Jane was great!

Donation Day

The first donation day was a gorgeous day, about 75 degrees Fahrenheit, not a single cloud in the sky -- the first *really* nice spring day we've had in Northern California this year. I hope that's a sign for how things work out for "Jackie."

Jane and I showed up at 10:30 for my final set of Neupogen shots. Then, we went to have lunch ("don't drink much, because you can not get up for the 4 hours of your donation!"), and returned to start the donation at about 12:30. I changed into a pair of pyjama pants, because I wanted to be comfortable. Lou, the apheresis nurse, put a wristband with identifying information on me.

I sat in the donation chair -- basically a recliner chair. Lou took my temperature, blood pressure, and pulse again. The apheresis machine next to the chair was already set up. The hoses were primed with clear saline solution, and three IV bags were hanging on hooks at the top of the machine: anticoagulant solution, which would be added to my blood as it went through the machine to prevent it from clotting. Saline solution, which is used mostly to prime the empty hoses. And an empty bag that was labeled with my identifying information and something like "NMDP Volunteer Donor # 123456789, NMDP Recipient # 987654321". This is the bag that the stem cells were collected in.

Lou decided which veins to use, and got ready to insert the needles. The machine would draw the blood out of my right arm, and return it into the left.

I must have been nervous, because she got me some Ativan "to help you relax". She used a local anesthetic to numb the area where she was going to insert the needles, and then inserted the first needle into the right arm (the "outbound" one). After taping down the needle, she took about 10 test tubes of blood for various tests, and then connected the hose from the machine to the needle. She then inserted the second needle into my left arm, taped it down, and started the machine. I had a foam ball in my right hand that I was supposed to squeeze every 5-10 seconds to keep the blood flowing to my arm.

As the clear saline solution from the return line started running into my left arm, I could feel the cool liquid flow up the vein in my arm. It was a very strange feeling. Remember, this stuff was at room, not body, temperature.

When my blood started flowing out of my right arm, we could see it travel through the hose towards the apheresis machine pretty quickly, a deep red liquid chasing the clear saline into the machine. That was neat to watch. You could trace the blood around the hoses in the machine, and eventually, it made its way to the return line. The fluid running into my left arm changed color from clear to red, and the cycle was closed. Lou told me to let her know if I felt any tingling in my toes or lips -- that's a sign that I was low on Calcium, and they could easily fix it by giving me some calcium through a drip.

When that was all set up, another nurse gave me a warmed blanket (from a warming oven) for my right arm, and also a plastic bottle filled with warm liquid to squeeze instead of the foam ball. Apparently, warmth makes the blood flow better. She also gave me warmed blankets to cover my entire body, and made me snuggly warm. Without them, your body can lose a lot of heat, because your blood leaves your body and comes back noticeably cooler.

That was pretty much it. Over the course of the next 3 1/2 hours, the machine processed 12 liters of blood (my entire blood 2 1/2 times over), collecting 220cc of salmon-colored stem cells into the donation bag. Lou would periodically come over to take some readings and adjust the machine, increasing the blood flow from the original 50cc/minute to 65cc/minute by the time I was done. About an hour and a half into the donation, I noticed my toes got a bit tingly, and Lou set up a Calcium drip that she connected

to the return line straight away. To be perfectly honest, I think my feet may have been falling asleep, because I sat so still for so long, and I might have been interpreting it as tingling.

Jane was great. She kept me company, and would periodically go for walks to get her circulation going. Remember, she has a little co-pilot in her tummy! I had some sips of a coffee she brought me, but not too much. I could already feel my bladder starting to fill up from all the anticoagulant which my kidneys were filtering out of my blood. I passed the time watching TV and thinking about all kinds of things. Once, a third nurse came by to ask me my name and birthdate, then double-checked it against the information written

on the collection bag, and wrote her initials to indicate that it had been double-checked. Apparently, that's standard procedure: *every* collection is independently double-checked by at least 2 separate nurses. Good to know.

That was pretty much it for the first day. When the machine had reached its goal of processing 12 liters and collecting over 200cc, it beeped, and Lou came over to start the disconnection process, which took another 10-15 minutes. She stopped the bloodflow from my right arm and took some more blood samples so they could measure the effect of the procedure with the before/after samples. The machine returned all the blood that was still sitting in the hoses back into my left arm. When all the blood got back, Lou removed the needles one by one, and gave me compression bandages that I kept on for another 4 hours.

Finally freed of all connections to the apheresis machine, I went straight to the bathroom, because my bladder really had gotten quite full just from the anticoagulant. I'd gone through slightly more than 1 bag, which I think is a liter, during the procedure.

One thing that was quite noticeable immediately was the fact that my bones and muscles already felt a *lot* better. Remember, the discomfort was due to the pressure from the stem cells, and many of those had just been removed from my bloodstream (altough my marrow was busily making more).

Jane and I went home at around 5:00pm, and we both relaxed for a while. We actually went out to dinner with a friend that night, walking from our place to the restaurant, so I was really feeling a lot better.

The next donation was the following day, starting at 7:30am!! Getting up that early was probably one of the hardest things of the whole process. Get this: the Stanford cancer Center has valet parking! At 7:15am, there was no question that we'd take advantage of that offering. Again everything was already set up and ready to go in the apheresis unit, including calcium from the beginning -- nice touch! In fact, this time Lou had me pop the Ativan before I even sat down in the char. The procedure was the same as the previous

day, except that my left wrist was a little swollen from the day before, so Lou used a vein near my elbow for the return this time.

At one point, Jane got me an espresso and fed me a bagel -- yum! Diane stopped by at one point to take a picture and talk to me. It was nice to see her. She was on her way out of town as a courier with stem cells for someone else, so I wouldn't hear from her for a couple of days.

When the second donation was done, I honestly felt as if I'd never taken Neupogen in my life -- I felt great! It was a gorgeous day again, and since we had started early that morning, it was only about noon. We were both pretty hungry, so Jane and I went home, I took a shower and changed, and we had a great lunch, followed by a nice walk.

Honestly, the whole procedure was really no big deal. In fact, it was kind of nice sitting in a reclining chair with a flat screen TV mounted right in front of your face, and several people eager to help you with whatever you wanted. I could get used to that! :)

OK, so that's my part of the story so far. As I write this, "Jackie" is probably being prepped for the transfusion. I was told that the prep work involves high doses of X-rays and chemotherapy to destroy her existing bone marrow. The stem cells will be infused at just the right time to "colonize" her bones -- hopefully everything works out for her. During this time, her body is not producing any blood of its own, and she is kept alive by lots of blood transfusions.

An amazing fact I learned: after the transplant, the blood running through her veins will have *my* DNA! In fact, her blood will genetically be male! She will have whatever allergies I have right now! (And since the cherry trees are starting to bloom around here, I'm feeling my hay fever -- sorry, Jackie, if you didn't know what hay fever was, you will now.) Her entire immune system will be the same as mine. To me, that's the most amazing thing I've ever heard.

If you've read this far, thanks for hanging in there. I know this is long and detailed, but I wanted to write down my impressions as accurately as I remembered them.

I hope I have inspired you to consider registering with the NMDP if it fits into your situation in life, or to donate blood if you're eligible.

PS: a promising new area of research has to do with stem cells from "cord blood". "Cord blood" is the blood in a baby's umbilical cord, and it is very rich with stem cells. It typically goes to waste when the baby is born. In the United States, more and more parents are donating their baby's cord blood, or are choosing to store it themselves "just in case". If you are expecting a baby, and are not planning to store the cord blood, I strongly urge you to donate the cord blood to the NMDP. There are absolutely no ethical concerns with cord blood research, and it won't cost you anything. Check out the details on the marrow.org website -- do it today.