Saturday, April 16, 2011

I've been thinking about this post for a couple of weeks now, dreading the day that this post would come out of me. Today is that day.

A few hours ago, a friend called me to tell me that his sister had died. The sister was 29. In this post, I will refer to her as "C."

For the last few weeks, I've known that call was on it's way. I've been wanting to scream at the world against the insanity of it all, and my loudest voice is this blog .... but I couldn't put my thoughts up on the web, lest C happen to read them. Now, I guess, it's too late to matter.

In comments to an earlier post on this blog, I had written that I was certain that, somewhere out there, there was someone who had seen the pattern I've seen at the University of California, avoided the University as a result, and perhaps avoided an early death. In fact, I had someone particular in mind. That someone was C, a young lady who had liver cancer, diagnosed 6 years ago. For 6 years (SIX YEARS!!!) she was metastasis free, and could have had a transplant. Her Kaiser hepatologist (UCLA trained, BTW) didn't get her on a transplant list. Eventually, after she and her family, encouraged by doctors they knew (apparently including me) pushed for her to get on a transplant list, she wound up on the "transplant list" at UCLA. She told me all about how Dr. Ted Busatil, head of liver transplant surgery at UCLA, assured her that he was going to get her a liver. And yet, for approximately a year and a half on this "transplant list," evaluations were done. Bills were generated, and paid. She had doctor's visits, and tests, and scans, and workups ... and no transplant.

Really, after all that time, something was wrong. UCLA transplanted Yakuza, and alcoholics, and criminals, and not this sweet, innocent girl.

I pointed out to the family that something was not quite right, and I may have had some small part in helping them start looking for a program that would perform an actual transplant. C wound up on what I believe was a real transplant list elsewhere, and was, I believe, on track to have an actual transplant instead of just evaluations for a transplant that would never come. She had advanced imaging which showed she still had no metastasis, and was ready to finally have a real transplant. I understand she was thinking about life after a transplant, and planning a future wedding (that last part is hearsay. C never personally told me herself about planning a wedding. Girl stuff, I suppose).

Then, about two weeks ago, C developed hip pain. She went to the hospital, and an X ray showed a femoral mass. Biopsy results indicated it was a metastasis. Unlike Mickey Mantle, C would never get a transplant with a metastasis ... and that's when I first started thinking about the what-ifs. If she'd only gotten that transplant before that metastasis, if she'd only started to look elsewhere for a liver earlier, events would have been different. Once I knew about the mass, however, I knew that the what-ifs were pointless. I knew what was coming. This blog post started in my head at that time, but I've kept it inside until now.

Tonight, C died. Age 29. She was part of that same pattern I've mentioned elsewhere on this blog. Services were billed, and revenue was generated, and the complete service (a transplant) was never done. Her family and her insurance paid for years for pre-transplant evaluations, with no transplant. And eventually, suddenly, it was too late to do a transplant anywhere at all.

There are no words to express the sorrow I feel for this needless early death. There are likewise no words to express my anger about the way she was convinced for years (YEARS!!) not to look elsewhere for a transplant, and to just continue the same medically pointless (but financially lucrative) medical evaluations that would never lead to a transplant.

By the way, there was one person on the UCLA staff who let C know that a transplant really was not forthcoming at UCLA. If that person is reading this, this paragraph is for you: C got your message, and understood it. She just didn't want to believe the message, however. She desperately wanted to believe that she really was going to get a liver soon, and that the extra time it would take to look another transplant program was not justified. Just so you know why C appeared to ignore your message until, as it turned out, it was too late.

This isn't at all the blog post I was imagining over the last few weeks, since I cannot find the words to write that post that's been growing in my head. I just want to scream at the insanity of this all, and the words for that screaming just do not exist.

Still, though this post is not the scream I wish I could generate, it may at least be a warning to some readers. If you are reading this blog, and you know C ... well, you've probably already absorbed the warning that I think is obvious in this tale. If I see you at the funeral, I plan not to bring up that warning, since I think everyone at the funeral will have already had their eyes opened. For the rest of you, those who still need a warning: consider this your warning. I still believe that this blog may do some good by convincing some sick person out there to do their due diligence when selecting a medical center, and perhaps finding a medical center where the NIH has not made a finding that the personnel have a "culture of noncompliance with the law."

Good luck. And Godspeed, C.

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