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Walter's Walk - My Bloody Valentine's Day
February 15th, 2012
08:56 am

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My Bloody Valentine's Day
"Doctors optimistic that George Clooney stem-cell replacement therapy will yield 'a great head of hair.'"



In 1993, there was a blood drive at my workplace, and though I had never given before, it seemed like a decent thing to do. Some smart-aleck coworker thought it would be funny to tell me that I was not to eat anything after, and I summarily passed out. A few months later, I went back to the blood bank to give, but I was so overcome with anxiety, I turned tail and left. I never gave blood again. I vaguely recalled doing something additional that day in 1993. Apparently the something additional was to consent to having my DNA registered in a bone-marrow donation database. (Did they know what DNA was back then? I'm pretty sure that sequencing the human genome was decidedly after the Seinfeld-was-still-funny era.)

Fast forward to fall 2011. A FedEx arrives from the National Marrow Donor Program saying


"You have been identified as a potential match for a 51-year-old woman in need of a transplant. The patient's doctor is trying to determine treatment options as quickly as possible. Please call immediately."


So I call. After saying yes I will help, the health assessment commences. They want to make sure you aren't transmitting diseases to someone with an already compromised immune system, so the questioning is quite thorough.

"Have you ever injected illegal drugs?"
"Have you ever been incarcerated for more than 72 hours?"
"Do you have a history of fumbleitis, butterfingers or dropsies?"
"Were you ever in the armed forces?"
"Have you had a tattoo in the last year?"
"Do you like movies about gladiators?"

The only thing that seemed to raise a red flag was that I was using a cream for proto skin cancer on my arms. I only had like a week left, and only mentioned it in passing, but for whatever reason that seemed to discourage them. A month later or so, I got another call asking if I was still willing and if I was done with the fluorouracil. I guess that means that in the interim they didn't find any great matches for the patient. I once again faced St. Peter, and this time seemed to pass. In late December, I went to a local clinic and gave them a couple vials of blood. They checked for HIV, hepatitis, those kind of things, and I was all clean. I was again asked if I was willing to do the donation. Speaking to the case manager, I learned a little more about the recipient. She has some uncommon form of leukemia and lives in a foreign country (northern European seems likeliest given my pasty white genetics). With this procedure, she will have a 40-60% chance of surviving. "40%? That sucks." "Well, without it, she's 0%." Guess that's pretty much a no-brainer.

The next step was an all-day visit to Mayo Clinic where I gave 18 vials of blood, got a chest xray, EKG, etc, and met with a doctor. It turns out that I'm in pretty decent health. Too many years of volunteering in college psych experiments compelled me to ask, "I'm not a placebo, am I?" Nope. I also asked that if there was a backup or if for some reason my stuff wasn't getting it done, would someone closely related like my brother be a possible better match? I learnt that there were ten genetic markers they use to assess compatibility. They try to find someone who matches as many as possible to avoid a rejection. (Because it's a bone-marrow replacement, the danger isn't that my stuff will be rejected so much as my stuff itself will be rejecting her body.) Of the ten genetic markers, I matched up with her on ... ten. So if I'm not a good match, no one is, thank you for playing.

There are two kinds of donation processes for someone needing a bone marrow transplant. One (the only one I had heard of prior) is to knock you out and suck the marrow right out of your hip. This involves hospitalization. The newer method is to use your stem cells to replace the donee's marrow. This is the one I did. (If they don't glean enough cells, they might hold the hip invasion as a reserve option, but apparently my counts were through the roof.) The first step is to induce the body to overproduce stem cells; the second is to grab those. So last Friday I got my first injections of a drug that compels the body to go into stem cell overproduction. The next three days a nurse would visit me in the morning, question me on side effects, check my vitals and then give me more injections. This obviously isn't a natural thing for your body to do, so there are a number of potential side effects. The doctors went over all these things with me beforehand to make sure that I was making an informed choice about the process. They also emphasized that I had the right to quit at any time in the process if it was becoming too much. Maybe a legal right, but aborting was a moral impossibility. The main symptom (for me, at least) is that it is the same thing as before you get a flu and you start producing white blood cells and your bones get all achy. Except more. The daily survey asked me to rate my pain levels for various body parts on a scale of 1 to 4. The worst part for me was whenever I sneezed, I felt like my bones were being yanked out of my back. I rate that about a 7. (I was offered the option of prescriptions for stronger stuff, but eschewed. I'm pretty sure mixing gambling and codeine qualifies you for some kind of Anonymous.) From what I gathered with a quick glance at the survey, answering even a 3 for any of the questions might be a fast track to stopping the process. I had already decided that there was absolutely, positively no way I wasn't going through with this. Even if they had to scrape me off the sidewalk to get me to the hospital, I was still going to do it, so ... I lied. All my answers came in as 2's. Whaddayaknow. If they actually intend to use this data for some kind of scientific assessment, I recommend they change the process so that the donors fill out the surveys themselves on a daily basis and remit them after the process is complete. And if you're somebody who found my blog in the future and are weighing doing this procedure, I say just do it. You'll survive. It'll suck for a very short period of time, but you'll survive.

On the fifth day (yesterday, February 14th), I went to Mayo at 7am, got more blood drawn to see how I was doing, got my last shots, and waited an hour. Then they hooked me up to the machine(pictured). It's about as complicated as a pool pump. Out. Filter. In. The filter is simply a centrifuge separating the components of your blood. From there the stem cells are processed in a local lab and SSTed to her hospital. They ran the equivalent of my entire blood mass 5 times. I was hooked up for about 5 hours. In parallel with my getting juiced on stem cells, her entire bone marrow was being vanquished(more the reason why I was committed). She'll literally be getting replacement cells fresh not frozen. As a bonus, I smoked three bowls at 4:20am just to give her a little AZ-THC sendoff. Just kidding. I think. One thing that I am told will happen is that my DNA might start taking over her body a bit, so I hope her friends and family are ready to get in touch with her new inner schachspieler. Nerd DNA. It's a good thing.

---
At some point during my all-day health assessment visit last month, I found myself seated in a waiting era with an elderly woman. While reaching to grab something out of her bag, she winced in pain. As I helped her, I asked, "arthritis?" "No.... Cancer. Cancer. Don't you have cancer?" Um, no. But my eyes were opened in that moment, and I couldn't help but notice all the people in that building who were really suffering and were just hoping TO LIVE. Friends and medical professionals all said something like, "what a great thing you're doing," but really I'm not doing anything. I'm just showing up. That's not false modesty; I really mean it. I'm just meat. The people who come to work every day and try to alleviate the suffering are the great ones. The guy who stayed up late for years going through medical school to someday come up with some of these ideas is great. Forty years ago, Nixon declared a war on cancer. I don't know who is winning, but I got to see the soldiers and the sergeants and the wounded who are still fighting, and what they are doing is great.


There are millions of people registered in the national database. That's great. There are hundreds of millions who are not. That's not so great. Half the people who need a transplant don't find a suitable match. And obviously with so few matches, there are going to be compromises sometimes on how many markers the doctors are willing to accommodate. Go register. Go to http://marrow.org/Home.aspx and learn about what is going on and what you can do to help. The odds of actually getting the call-up are currently 1/500, so it's mostly nothing. But 1000s of people are dying every year for the lack of the right person having registered. If you're not sure, just do it. No obligation. I understand that some people are only willing to do it for a brother or a cousin or a child or whatever. Sounds kinda monkey brain to me, but I have no illusions about the world. But right now someone's brother or cousin or child has tried all those and is waiting by the phone for the call. Could be you.

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Comments
 
[User Picture]
From:captaino
Date:February 15th, 2012 04:17 pm (UTC)
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Best thing I'm likely to read this day, or this week, or this month. Thanks for posting.
[User Picture]
From:dmorr
Date:February 15th, 2012 04:35 pm (UTC)
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What he said. This is great.

Do you get to find out if it works in the end?
[User Picture]
From:walterzuey
Date:February 15th, 2012 07:02 pm (UTC)
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They will give me updates at certain pre-determined intervals. My understanding is that either they will take or they will not take and the ultimate outcome will be apparent rather quickly.
[User Picture]
From:whipartist
Date:February 16th, 2012 05:12 am (UTC)
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You're full of awesome, some of which you just donated.

And you're smarter than most people, so you know you just made a hugely +EV play no matter what river card falls.
[User Picture]
From:hgfalling
Date:February 15th, 2012 05:19 pm (UTC)
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As John Wooden said, "You can't live a perfect day without doing something for someone who will never be able to repay you." Whether you think you we ought to or not, te laudamus!
[User Picture]
From:brec
Date:February 15th, 2012 05:47 pm (UTC)
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And he writes good, too.
[User Picture]
From:brec
Date:February 15th, 2012 05:49 pm (UTC)
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P.S. marrow.org are ageist bigots: " I am between the ages of 18 and 60."
[User Picture]
From:walterzuey
Date:February 15th, 2012 07:03 pm (UTC)
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I will happily testify to your being healthier than I.
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From:chrishartman
Date:February 15th, 2012 07:49 pm (UTC)
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Your comment is full of meta-goodness.
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From:jiggery_pokery
Date:February 15th, 2012 05:48 pm (UTC)
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*salutes*

Good on you. I'm on the UK counterpart register, so this was definitely relevant as well as interesting.
[User Picture]
From:njchick
Date:February 15th, 2012 06:31 pm (UTC)
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Great story.

You rock!!!

xx
[User Picture]
From:nagekinoki
Date:February 15th, 2012 06:59 pm (UTC)
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I think what you did is awesome, even though you think it's just showing up. That simple act alone is something that takes a little courage but above all, foresight about what your gift can mean to someone else.
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From:prock
Date:February 15th, 2012 11:15 pm (UTC)
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Well done. I know I'm a donor at least 2x over. But I'm not really sure what for. What would be ideal is some sort of central donor registry so you could sign up for all the donoring you like, and update/monitor later in time.

I wonder how tough that would be logistically?
[User Picture]
From:evwhore
Date:February 16th, 2012 03:07 am (UTC)
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You fucking rock.

One thing that I am told will happen is that my DNA might start taking over her body a bit, so I hope her friends and family are ready to get in touch with her new inner schachspieler.

To be shown on an upcoming episode of House. Although apparently there aren't too many of those left (which is probably a good thing)
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From:skin_it_mahatma
Date:February 16th, 2012 03:24 am (UTC)
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Suuuure. You'll do anything for a Norwegian blonde!

Seriously, it's a positively awesome thing you did. Guess we will have a number two for Carlsen over there very soon.
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From:jnala
Date:February 16th, 2012 07:39 am (UTC)
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Awesome. Go you.

I just filled out the online form and requested a kit to be listed in the registry. Thanks for the pointer.
[User Picture]
From:mgrape
Date:February 24th, 2012 09:43 pm (UTC)
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Me too. Just received/returned my kit.
[User Picture]
From:adbjupe
Date:February 16th, 2012 01:00 pm (UTC)
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+10,000
[User Picture]
From:crosstables
Date:February 16th, 2012 09:44 pm (UTC)
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Agreed.
[User Picture]
From:dianagram
Date:February 16th, 2012 01:24 pm (UTC)
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A very noble deed, indeed!
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From:adbploink
Date:February 16th, 2012 03:26 pm (UTC)
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Hmm, I'll alert the team to be on the lookout for someone who mass-grinds Hypers from Northern Europe.
From:loser_variable
Date:February 18th, 2012 12:13 am (UTC)
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You bastard. With it being Cupid season, I've been walking around with bitter hatred for all of human kind, and pulling for the death comet to arrive right on 2/15. You had to go and do something utterly decent to redeem the species. Well done.
[User Picture]
From:luckylefty
Date:February 18th, 2012 04:28 pm (UTC)
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Go you!

Any objections if I link to this from my LJ? It might get more people to sign up.
[User Picture]
From:walterzuey
Date:February 20th, 2012 08:42 pm (UTC)
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No, please do.
[User Picture]
From:sophonax
Date:February 20th, 2012 04:50 am (UTC)
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You're awesome. Fuck cancer.
[User Picture]
From:pimpofpoker
Date:February 21st, 2012 12:46 pm (UTC)
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I can't believe millions of people have passed that questionaire.
From:(Anonymous)
Date:February 22nd, 2012 10:31 pm (UTC)
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Registered. Thank you.

LGF
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