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Sad Day

I've recently learned that my bone marrow recipient has passed away. Here is an excerpt from the letter I received from the Blood Center:

"I am writing today with some very sad news. Your recipient recently passed away from Chronic GVHD... The family sends a message of thanks for your generous gift. The staff... would like to express our deepest sympathy on the death of your recipient, and our most heartfelt thanks for your efforts on behalf of this patient. It is natural to grieve, but we would like you to remember that you gave a desperately ill person hope and the chance to live. For that, the recipient's family will be forever grateful and comforted. They can rest assured that their loved one was able to take full advantage of the most advanced medical practice and given every possible opportunity for a cure.

Remember also that the knowledge gained from each and every transplant benefits future recipients. Your contribution will continue to give hope and help to critically ill patients for years to come."

This came as quite a shock to me because last I heard, she was doing well. But they told me from the beginning that because she was older, she would have less of a chance of surviving.

I looked up Chronic GVHD and it seems to occur because my white blood cells don't recognize the recipient's cells and so they attack them. There's more of a chance of this happening when the recipient is of an older age. It's something that happens fairly often, but sometimes it's mild and resolves itself eventually.

I just hope that she was able to enjoy the last year and a half somewhat. I don't know if her family will ever contact me personally.

I didn't know her at all, but I wish I could have done more. Once my little cells were in her body, I kind of felt like there was a part of me living on somewhere else in the world. My blood cells had gone on a little trip to devote their lives to saving someone else's body. I guess it was too much for them to handle, though.

I feel bad that there seems to have been some kind of misunderstanding between my blood cells and her body. Were their orders unclear? Did they wake up in a confusing, foreign land and just try to survive the best they could? I wish it could have worked out better.

I just hope that someday people won't have to suffer through leukemia anymore. Maybe some kind of artificial blood will be developed that understands what it's supposed to be doing. Or maybe a sort of chemical corporal that could have met up with my blood cells, shaken them by their shoulders, and said, "Look, I know you don't feel that you belong here and you're scared. But there's a bigger picture here. Someone's life is depending on you. This is your new home and you can be happy here if you just try."

To the friends and family of my recipient, I'm very sorry for your loss. I'm glad to have been associated with her in some way and I'm still happy that I tried to help.
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(no subject)

I received a card from the recipient! Here's what she wrote:

"Dear Donor,
Thanks so much for your card. Please excuse my writing the medicine they have me on makes my hand a little shaky. So far I am day 40 post transplant. You weren't kidding about your stem cells. They came in with a vengeance on day 13 and my bone marrow biopsy on day 28 showed only your cells. Amazing! My family -- I have a son who turned 1 in September and a ten year old daughter plus my husband of course, can in no way express our gratitude to you. You have given me a second chance at life which is such an amazing gift. We look forward to meeting you someday so that we can thank you in person. Take care.
Your recipient. :-)"

That was so sweet! If there's such a thing as Heaven, I think all I need to do is present this card to get in.

It almost brought tears to my eyes to realize that I was helping save someone's mother's life. I didn't know she had children.

Also, I'm glad she wants to meet me. I'd love to see how she's doing in person. Of course, we have to wait until next Fall.

I think she gave me a little clue as to where she's from: the card had a picture of a California Poppy on it. Pretty sneaky! If that's true, then it'll be even easier for us to meet since we live in the same state.

It's so great to actually hear from her like this. She's a real person whose life I made a real difference in. I'm going to be in a good mood for several years.
  • Current Music
    New Order
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Good news!

I found out a few days ago that my recipient is doing well! She has even checked out of the hospital.

I'm so glad. That means my stem cells are making new blood for her and her body is accepting it.

Now that I think about it, it seems really weird. There's a woman out there with blood flowing through her veins that was created from cells that I gave her. Isn't modern science wonderful?

Of course, in the future I'm sure people will look back at this technique as hopelessly antiquated. They'll say, "Why didn't they just make artificial blood for her -- it's just as good (even better, some say) as real blood. Honey, can you bring the hover car around?"

I should receive another update on her condition in a couple of months.

I'm just so happy everything's going well so far!
  • Current Music
    Empire Strikes Back
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More blood?

Last week I had to go in again to give more blood. It never ends, I tell ya.

Ms. Flemer called me at work and said apologetically, "I'm so sorry, but I accidentally ordered the wrong blood test for you last week. I sent in a blue tube and a green tube, but I should have sent a *red* tube and a green tube. So I just need one more little tube of blood from you. I'm really sorry, I hope that's okay."

I rolled my eyes silently to myself and went back for more sharp object poking. At least it was just one little tube.

At least they used my right arm this time.

I loaded up on orange juice, coffee and a muffin afterward, and headed in to work.

I still haven't heard anything about the welfare of the recipient. I wish they would just give me some indication of how she's doing.
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One Month Check In

It has now been around a month since the donation, so I had to go back in to the blood center today and give them a little more blood for testing. They want to make sure my blood has gone back to normal.

How can it go back to normal if they keep scaring it with the pointy, sharp things?

I was hoping that they would go for a vein in my right arm since there's actually still a little bruising on my left arm from the procedure.

But no, my right arm's veins still seem to be hiding. So, left arm it is (again).

It really didn't hurt though, and they only took one small vial. So I had a cup of orange juice and left.

They tell me that I should be finding out soon how the recipient is doing. I think about her a lot. I don't pray, because I don't do that sort of thing, but I do hope.
  • Current Music
    Will & Grace on TV
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Something fun for Halsted

This is for Halsted.

Once upon a time there was a baby squid that wanted to have a pet kitty. The baby squid (we'll call him babysquid for short) imagined all kinds of kitties -- black ones, white ones, calico ones and even purple ones.

"Whoever heard of a purple kitty?" asked his friend, babymantaray.

Babysquid replied, "You don't need to hear about them. They live in our hearts."

"Huh?"

"Yeah, purple kitties live in our hearts. As a matter of fact, I can hear one meowing inside you right now."

Babymantaray didn't know whether to feel happy or deeply disturbed.

So the two friends swam up to the surface of the San Francisco Bay, scanning the beach for kitties.

"Is that a kitty?" asked babymantaray, pointing to a broken Heineken bottle.

"No, that's a salamander," said babysquid knowingly. "Now, that's a kitty," he said, indicating a rusted, burned out Volvo with no tires.

"How will we get it back home?" asked babymantaray.

"I don't think we can," said babysquid despairingly. "Oh well, at least we got to see a kitty today. Let's go home now -- I'm really hungry for some reason."

With that, the two ocean friends returned to the bottom of the bay and played a game of chess in which babymantaray moved only his knights during the entire game.
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Donation Day

My stem cells are on their way to live in someone else's body. How weird is that?

Yesterday morning I got up at an ungodly hour in order to get to Berkeley by 8:15am. It was still dark, and that's just wrong.

I knew I needed to eat a good breakfast before the procedure, so I went to Lee's on Market Street and bought a bagel with egg and tomato, and an orange juice. I must not have been used to eating that early and/or I was a little nervous so I couldn't eat the whole thing. I also had some coffee, but just a little. I know that coffee is a dehydrator and I needed to retain as much water as I could so that my veins would look good.

As I walked into the BART station, I was immediately accosted by a man asking if I could give him some money for the train. Because this happens to me many times a day, I react almost unconsciously to it now; I told him no, I only had enough for myself. He walked away, but then I thought I'm on my way to save one stranger's life and yet I can't be bothered to give another one a dollar.

At Alta Bates I got to meet Lynn, the other donor that has been going through this procedure at the same time as me. She was really sweet and I hope to stay in touch with her.

Lynn and I got up onto neighboring hospital beds and got comfortable -- we would be there for quite a while.

I received one more Filgrastim injection and Paulette checked my arms to see if my veins were cooperating.

"Well, I see a couple of possibilities on your right arm, but they don't look all that great. Let me see your left arm," she said as she moved to the other side of the bed. "Oh, okay, this one's good. We'll go with this."

Whew. So I didn't need a central line after all. It wouldn't have been the end of the world, but this way is much easier.

My left arm was swabbed thoroughly with antiseptic and then I received a topical anesthetic injection because the needle was a little larger than those normally used to draw blood. The anesthetic stung as it went in, but then I couldn't feel the large needle going in at all.

On my right arm, they needed to put an ingoing line in, but the veins weren't that great. So they put it into the back of my hand. That also needed an anesthetic injection, which hurt even worse than the first one, but thankfully it didn't last long. Then Paulette inserted that line. The one in my left arm was a big steel needle, but the one in my right hand was a flexible plastic tube. Which was cool because it allowed a lot of flexibility -- I was hardly restricted in the use of my right hand at all.

So the hard part was over. Now all I had to do was lie still and filter.

Every once in a while at the beginning the apheresis machine would complain that it wasn't receiving enough blood, so I had to squeeze a little rubber ball in my left hand to get the blood flowing better. But after the first hour or so, it stopped complaining.

The only thing that gave me problems (and this was pretty minor) was lack of calcium. See, the anticoagulant that they put into the blood to keep it from clotting in the machine reacts with the calcium in my body and reduces its presence. The most common sign of insufficient calcium is a tingling sensation around one's lips. This happened to me a few times and Paulette had to inject a calcium supplement into my body. But it wasn't a big deal because she could just inject it into the tubing going into my right hand. Piece of cake. Except during the last time when she encountered a blood clot in the tubing. She had to take the needle out and a bunch of blood spurted out as she removed the clot. None of this caused me any pain at all, it was just kind of messy. And I felt bad for my sister, Jennie, because she showed up right as this was happening. It looked a lot worse than it was.

Jennie visited with me for my last hour or so, which was nice. I had been reading a Calvin and Hobbes compilation, but it was kind of difficult to hold up and turn the pages.

Actually, the most difficult part of the whole experience was going to the bathroom. The nurse brought me a plastic bottle to pee in and shut the curtains around my bed. However, I did not have the use of my left arm and I had to keep it completely straight. But necessity begets resourcefulness and I was able to do it -- twice. I was surprised that Lynn never had to go, but it's got to be a whole lot more difficult for women -- I mean like ten times worse. I'm sure that she just wanted to wait until it was over rather than to have to go through that.

So it took a little over six hours total. Right now it all seems like kind of a blur. When I got home, I was really tired but I didn't feel like laying down -- I had just been laying down all day. Regardless, I took a nap in front of the TV with Battlestar Galactica on.

I still have a little, purple bruise on my left arm where the needle went in and it looks kind of gross. But you can hardly even see where the needle went into my right hand. I'm still a little achey and tired from the Filgrastim, but I can feel it lessening.

So, it's finally over. But in a way, it's not. It's not nearly over for my recipient -- now comes the hard part for her. Engraftment of my stem cells and recovery. Hopefully, they will take and her body won't reject them. The hospital will keep me informed as to her condition and I'm going to send a little get well note to her.

But I have a good feeling. A feeling that her best years are in front of her. Recipient, my thoughts are with you.
  • Current Music
    Run, Lola, Run soundtrack
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Injections every day

So, my physical was fine -- apparently I'm in great shape (or at least good enough). Susan called me when I got back from Boston to let me know that everything was great and they wanted to proceed. My first Filgrastim injection was scheduled for Friday morning. This was to be followed by one injection every day until Tuesday the 12th, they day of the apheresis.

I had to go in to Alta Bates for the first injection so that they could monitor me and make sure that I didn't have any kind of adverse reaction. I had actually just started a new job at Wells Fargo the day before. They knew that I would be missing some of Friday and all of Tuesday before they hired me though.

Laurie at Alta Bates gave me the injection and also drew some more blood (of course).

"I've never seen a bad reaction to Filgrastim before," she said, "but we have to follow the protocol and make you stick around for at least fifteen minutes."

The shot was subcutaneous (just under the skin) and she gave it to me in the upper back of my left arm.

"I have to do this slowly so that it won't burn as much," she said as she stuck the needle in my arm. I could feel what she meant, but it really didn't hurt that badly. It just took longer than most shots.

It went fine and I didn't feel any different at all. So they let me go. Now I just had to wait for side effects.

On the BART ride back into the city, I tried to read but I remembered that nausea was a possible side effect. Just knowing that made me feel a little ill, so I just contented myself with people watching.

The rest of the work day went fine and I didn't feel anything but normal. Later that evening, I got a headache, but I couldn't tell if it was because of the hormone or just a normal headache.

The next morning, a nurse named Cindy came over to my house for the next injection. I thought that was very accomodating of the hospital. Cindy was very friendly and easy to talk to. She made me a little nervous when she mentioned that she had never done this before. But she immediately clarified that by saying that she had never been part of this program before -- she had given injections many times. Whew.

She was actually very good and neither of the shots were painful. Yes, she gave me two -- one in each arm. But I liked it better that way. They were shorter in duration than the one at Alta Bates.

"Your right arm doesn't bleed as much as your left arm."

"What?"

"Your left arm was bleeding a little after I gave you the shot, but I can't even tell were I poked your right arm. I don't know where to put the band-aid."

We talked a little about Harry Potter and life in San Francisco, but she had to go to her next victim. A woman in Orinda named Lynn is going through the same procedure at the same time as me. In fact, we may get to sit next to each other for the procedure.

That was Saturday and it went fine until around 4:30 pm; that's when my back started to ache.

"Oh, this is what they mean by the whole achey bone thing...," I said to the people in my house. My lower back felt like it had a headache. That sounds strange, I know.

I took an ibuprofen and the pain became barely noticeable after a while.

On Sunday morning, when Cindy came over for my next shots, I told her about the acheyness. She wrote it down, took my temperature, checked my blood pressure and all that. "Happens to practically everyone," she stated.

She told me about her horrible drive to Orinda and the terrifying Caldecott Tunnel.

On her way out the door, I offered her half of my bagel, but she declined politely.

I was achey for pretty much the whole day, but it was low level and didn't really bother me. Mostly I just thought it was interesting to note how my body was reacting to the Filgrastim. Isn't it weird what we can make our bodies do? You need more stem cells in your blood? No problem, just trick it into thinking that you have a massive infection and it'll release buckets of them into your circulatory system.

Today, I went into the blood center on Bush St. before work for my last injection. Well, not really last because they're going to give me another one right before the procedure, for some strange reason. I don't see how that one will really have time to make any difference. Oh well.

They needed to take some more blood (of course) to see if the hormone was doing its job. I swear, I must have given them a whole body's worth of blood by now.

Cindy told me that she might try to make it to Alta Bates to see Lynn and me during the procedure.

At work, I started to feel achey again and I took an ibuprofen. The pain pretty much went away. I'm glad that the acheyness has been so mild and easily treatable.

So I've been working out my forearms every day and drinking tons of water in the hopes that they'll be able to use the veins in my arms. Cindy told me on Sunday that my veins actually look pretty good and she didn't think that I would have any problems. Cool.

I have to get up early tomorrow for the trip out to Alta Bates in Berkeley. The apheresis is scheduled to begin at 8:15 am. Maybe I'll just sleep through it. Hopefully I'll be able to read, though.

They should really get a TV in there.

Anyway, I'm actually looking forward to it. It's kind of exciting and I'm glad that I'm able to help someone with leukemia.
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A complete physical

On August 21, I took BART to the Ashby station in Berkeley. There, a shuttle met me and took me to the Alta Bates hospital where the apheresis procedure will take place. They needed to take some more blood samples, take a look at the veins in my arms to determine their suitability, give me an EKG, give me chest x-ray, and a physical.

The doctor hadn't arrived yet so an assistant took the necessary blood samples from my left arm. I watched as she consulted a sheet of paper, preparing a small vial for each test. The number of vials grew rapidly.

"How many of those are there?" I asked, my eyes growing wide.

"Oh, looks like about sixteen to eighteen," she replied.

"Ah."

I had no idea they would need so much of my blood just for testing.

After a nice conversation with the assistant about her family in India, and much blood drawing, I went into the bathroom to pee into a small cup. It's not an easy task, but I'm sure it's much more difficult for women.

I always feel strange handing over a urine sample to someone. Here's a little cup with my piss in it. Thank you.

I drank some orange juice, then waited for the doctor. When she showed up she introduced herself as Suzanne and said, "Oh good, they haven't drawn your blood yet."

"Um, yes they have." I showed her the little cotton ball on my arm.

"Oh." She had a box in her hand with more vials in it. "Actually, we need to do these ones too. Do you mind?"

I hesitated slightly. "You need more?"

"Yes. Well, let me go check. Would it be all right with you if we have to take more?"

"Sure, that's fine," I said. As she walked away, I wondered about how much blood I could give them before there was a danger of passing out. I figured they must know what they're doing.

When she came back, she took me to the apheresis room and told me that they didn't need any more blood today. Suzanne introduced me to Marianne who would be taking a look at the veins in my arms.

I sat down with Marianne and rolled up my sleeves. She examined both arms thoroughly and said that my veins don't look too prominent. She said that there was probably only a thirty to forty percent chance that they would be able to do the apheresis using those veins. Most likely they would have to go through a central line -- either right under the clavicle or the femoral vein in the thigh.

They told me that using a central line is a little more risky and I would have to sign a separate consent form for that. But the risks are minimal and mostly it's just uncomfortable. Or I could opt to have them take bone marrow instead.

I told the doctor that it's probably easier to just go for the central line since I would be ready for the apheresis right then anyway. She agreed and mentioned that there are pros and cons for doing it either way.

One of the least common accidents that can occur with central line placement under the clavicle is a lung puncture. But it's a very rare occurence and easily treatable since I'll be right there in the hospital surrounded by trained professionals.

You know what? I think I would almost rather not hear about every little thing that could possibly go wrong. I realize that the hospital has to disclose everything for legal reasons, but I think it causes unnecessary worrying. And if a patient is worried or nervous it seems more likely that complications will occur.

So I may have to lay down with a catheter in my thigh for six hours. I jokingly asked Marianne if there were any vein exercises I could do. And she said actually there are. I could get one of those squeeze balls to workout my forearms. Also, I should be completely hydrated on the day of the procedure, warm, and relaxed. She asked if I had eaten lunch yet and I said no.

"That probably has a lot to do with it," she said. "If you haven't eaten and you're nervous, then your veins will hide."

So I'll try not to be nervous. But it's hard to be relaxed when you're telling yourself, if you're not relaxed they're going to stick a tube in your chest.

Next came the chest x-ray, the EKG, and then a brief physical exam from another doctor.

It all seemed to go well and the doctors were all nice and helpful. I was somewhat nervous throughout the visit and the doctors actually asked me a few times if I was all right or if I was nervous. I tried to just brush it off because I don't know why I was nervous. I should be able to put up with some discomfort in order to save someone's life. When I think of that or when I think of this woman's family and friends, then I calm down and I feel better.

Since I hadn't eaten lunch, Suzanne recommended that I go to High Tech Burrito just a few blocks away. It actually was pretty good.

She said she would call me and let me know the results of the tests when I get back from Boston on the 31st. They're going to shoot for having the procedure either during the week of September 11 or September 18.