The bone marrow update

A couple of weeks have elapsed here and the bone marrow donation picture has evolved and sharpened. Just to recap here, I have been matched up as a compatible donor to an unidentified man suffering from a serious form of leukemia. After a couple of phone consultations, filling up about 22 vials of blood for testing and the most comprehensive physical exam I have ever endured, I am still the prime candidate to be a donor to one anonymous individual.

The donation method will not be the traditional marrow extraction which could be quite painful, instead a course of drugs will administered to me starting 5 days before the donation date. The drugs essentially kick my bone marrow's production capabilities into overdrive and start to move stem cells out into my blood stream. I'm told that the increased cell production activity will make me feel like I am coming down with the flu. Eventually I am hooked up to a blood separation machine for 6 or more hours and the stem cells are collected. It is the peripheral blood stem cells (PBSC) that will be transplanted in hopes they will move right in and take over the patient's production of healthy blood cells.

The doctors have ordered some additional testing to be done very soon, not to determine any tissue matches, they are satisfied with that. But the extra testing is to certify that I am in prime health and the donation process is safe for me. I appreciate that.

Now quite a few people have told me that they think I am some kind of a hero for doing this, but I just don't see it that way. Just ask yourself: Would you go through a couple weeks of needle sticks, reading reams of documents and signing release forms if the end result was giving someone, anyone, a chance to beat cancer and live a longer, better life? I really like to think that most people would not give it more than a second before saying, "of course I will help!" The only thing I am sacrificing here is a little bit of time and a little bit of personal comfort. I know there are some people who would refuse to help and for them I feel sorry. They will never know the joy that I hope to feel someday when I finally get to meet the man who is walking around with my blood pumping through his heart.

To comply with the anonymity clauses in the consent forms I need to be intentionally vague about some things right now. I have already had some belly laugh moments and a few tears. I look forward to freely sharing those moments someday.

The human cost of health care

I have been thinking quite a bit about the recent news stories about Nataline Sarkisyan, the 17 year old from Northridge, CA who died after for her health care insurer denied the claim to cover a liver transplant. CIGNA insurance originally denied the coverage of the expensive operation after having approved coverage of a bone marrow transplant and a kidney transplant. A team of doctors requested that CIGNA cover the transplant operation to replace her rapidly failing liver. CIGNA denied the request early in December, calling it, "experimental, investigational and unproven." Nataline's doctors appealed to the insurer that a transplant was not a lark but a necessity to save the girl's life. After much public pressure to reconsider the case, CIGNA reversed its decision more than a week later but time had run out. Nataline died just hours after the insurance company approved the transplant.



Now there are a lot of news feeds and blogs out there shouting about this story. Some of the ink is speculative, some of it is spin and some of it is probably just sheer propaganda using the Nataline story to advance someone's agenda, just like Terry Schaivo was used as a political football by some congressional and right side of the bus christian hacks back in 2005. Nataline's case was even more tragic than just some political extremists using an innocent victim to advance an agenda. Nataline Sarkisyan's life was pitted against corporate profits and of course the artificial entity with all the rights of a human being, but none of the responsibilities won out over the 17 year old girl.



The bottom line in Nataline's story was that the US healthcare system is broken. It is wrapped in bean counter bureaucracy and right wing red tape. Conservatives cry that "socialized medicine" is an evil concept and will diminish the quality of American healthcare. Well this was an example of the "market efficiency" of private, for-profit healthcare. Which would really be worse? Insurance company greed or bureaucratic fuck ups. Either way, innocent die for no good reason. America has the most sophisticated healthcare technology in the world today but that technology is being withheld from more and more Americans every day based on their ability or inability to afford it.

But really, the rock just fell on it!

Toyota has a new advertising campaign geared at clearing out their current bloated inventory of SUV's. It involves average Americans devising clever ways of dropping very heavy things on their Jeeps, Explorers and other gas guzzlers. One commercial has a couple at the top of a cliff looking around to see who might be is watching just before they push a boulder over the edge to crush their Jeep parked below. In another ad, a crane operator drops a load of steel I-beams on his 4 X 4. While all this metal mayhem is going on, a voice over announcer barks about "finding a reason to buy a new Toyota."

Now, I have worked in the media biz long enough to know that television commercials appeal mostly to the seven deadly sins and not to reason and/or altruism. That is just the way advertising works. But this campaign has an undertone message that is both irresponsible and dishonest. The message beyond finding a reason to buy the Toyota SUV is the one of finding a METHOD to buy it. That message is," Its OK to commit insurance fraud to get what you want."

Think about it.

You are a member of the dwindling American middle class and you want (want,not need) a new car. Do you just trash your old one and head to the dealer? NO! No one could really afford to do that. You trash the car, head to the insurance agent to get a payoff and then to the dealer. That is the message being sent by Toyota's ad agency.

Don't get me wrong here. I am in no way defending the American insurance industry. They are infinitely more avaricious and greedy than the advertising business. But we as a people should not stoop to their level of compromised morals and selfish greed. We should not buy into their messages of conspicuous consumption. We can be, we must be better than that.

Have a jolly federally mandated yuletide season.

The U.S. House of representatives voted 372-9 with 10 members just voting "present" to overwhelmingly pass House Resolution 847, "Recognizing the importance of Christmas and the Christian faith"
Here's the all-important bill in its entirety:

Whereas Christmas, a holiday of great significance to Americans and many other cultures and nationalities, is celebrated annually by Christians throughout the United States and the world;

Whereas there are approximately 225,000,000 Christians in the United States, making Christianity the religion of over three-fourths of the American population;

Whereas there are approximately 2,000,000,000 Christians throughout the world, making Christianity the largest religion in the world and the religion of about one-third of the world population;

Whereas Christians identify themselves as those who believe in the salvation from sin offered to them through the sacrifice of their savior, Jesus Christ, the Son of God, and who, out of gratitude for the gift of salvation, commit themselves to living their lives in accordance with the teachings of the Holy Bible;

Whereas Christians and Christianity have contributed greatly to the development of western civilization;

Whereas the United States, being founded as a constitutional republic in the traditions of western civilization, finds much in its history that points observers back to its roots in Christianity;

Whereas on December 25 of each calendar year, American Christians observe Christmas, the holiday celebrating the birth of their savior, Jesus Christ;

Whereas for Christians, Christmas is celebrated as a recognition of God's redemption, mercy, and Grace; and

Whereas many Christians and non-Christians throughout the United States and the rest of the world, celebrate Christmas as a time to serve others:

Now, therefore be it Resolved, That the House of Representatives--

(1) recognizes the Christian faith as one of the great religions of the world;

(2) expresses continued support for Christians in the United States and worldwide;

(3) acknowledges the international religious and historical importance of Christmas and the Christian faith; (4) acknowledges and supports the role played by Christians and Christianity in the founding of the United States and in the formation of the western civilization;

(5) rejects bigotry and persecution directed against Christians, both in the United States and worldwide; and (6) expresses its deepest respect to American Christians and Christians throughout the world."

Well, is there any doubt that the USA has already turned into a theocracy and Christianity is THE OFFICIAL RELIGION OF AMERICA. How long will it be before we are required by federal law to worship? (at the [christian] church of our choice of course)

This Christmas bill was introduced on December 6th and overwhelmingly passed in only 5 days. In contrast to the speedy handling of this bill introduced by Rep. Steve King [R-IA] is this observation:
In 2007 there were 129 bills introduced in the House with the phrase "Health Care" somewhere in the title. As of today only 6 have been passed by house vote and one was vetoed by the White House. That leaves 122 bills related to national health issues left to die in the House of Representatives, just like many of the 47 million Americans who can't get health care.

Is it any wonder that an AP poll conducted over the past few days puts the national approval rate of Congress at 23%.

UPDATE: 12/13/07

Rep. Jim McDermott (D-WA), One of the 9 "liberal democrat" congressmen who voted nay on the resolution and who was raked over the coals and "mugshotted" on Fox News during an interview with Rep. Steve King had this to say:

"While the Republicans are passing a resolution celebrating Christmas, the president was vetoing health care for children. There’s a little bit of irony going on around here."

Thank you Rep. McDermott for being a stand up guy in a lay down Congress

In the right place ten years later

I held off for a few weeks and waited to see what would happen.

Now, I finally have a reason to start this blog. Ten years ago I signed up to enter the HLA registry program. It is an organization that maintains a database of potential bone marrow donors. Bone Marrow is factory standard equipment that we all have and it is responsible for the production of red blood cells, white blood cells and platelets.

Anyhow I'm getting ahead of myself here. I signed up with the registry with a group of friends since a friend of one of those friends was battling leukemia and a bone marrow transplant was his best treatment option

I quickly found that the probability of being an acceptable match to donate marrow was greater than me winning a few mil in Powerball, getting struck (twice) by lightning or scoring with a really hot chick. Just not gonna happen...I thought.

The HLA registry called a few weeks back to ask if I was still interested in participating in the donor program and that there was a possibility that I was a genetic match to someone who needed a transplant. I agreed immediately and set out on the path I find myself on at this moment. At the registry's request I visited a local lab to bleed into 9 separate vials for further testing, then packed a bag and my laptop and went on vacation. I did some web surfing to learn a bit more about the process of donating marrow, talked to the people closest to me, gave a heads up to the HR people at my job and sat back to put all of this into some sort of framework I could try to comprehend and wait for the test results. I tried to keep some objectivity and emotional distance from the whole idea, at least for now. I didn't want to set myself up for a disappointment.

A few days ago I got the phone call that I had been so anxious about. The tests results on my blood samples identified me as being the best possible donor to help someone in need. Now a complicated process of more tests, conferences and (hopefully) a donation of marrow and/or stem cells to...to somebody. The rules of the game dictate anonymity for a full year. I can not know the recipient and they can not know me.

I started thinking about the Powerball analogy and how it was appropriate on so many levels. First of all, the odds are high against being a genetic match for donating to someone closely related, only about 25% of siblings are a close enough tissue match. The odds against being a match with a distant relation or someone completely unrelated are astronomical. But a dimension much deeper than the compatibility odds was the moral issue. Here I was, with a common substance in my body, standard factory equipment, that I had taken for granted all my life and after a search of the thousands, tens of thousands or even hundreds of thousands of people represented in the HLA database, my bone marrow comes up as the winner in the lottery to potentially save somebody's life. That's so much better than getting a big lottery check and a photo op. But I am still going to keep spending a couple bucks every week on lottery tickets.

You never know.

Lightning might strike twice.