Sunday, June 21, 2009

Update on Me

I really appreciate those of you who read my blog and then send messages of concern about my health. Thank you.

Since so many people get news of my health from my blog, I need to update you.

I saw the surgeon in Connecticut on Wednesday and was all ready to schedule hernia surgery. But then I saw the Crohn's expert in New York. As my primary care provider put it, she's either a genius or she's lost her mind.

She sees no hernia. (This from a doctor who one year ago told me she doesn't know how to read a CT scan). She thinks she sees inflammation in the abdominal wall that is "transmigrating" -- I swear, I couldn't make this up -- to the bowel, perhaps causing my diarrhea. So she says no surgery because it might just cause a proliferation of this infection. Instead, I'm on antibiotics yet again, until I see the New York surgeon on July 6, when he's back from vacation. And if I were to have surgery, she thinks the problem is so close to the surface and so close to the hernia mesh that's already there, so there is a huge risk of infection, which leads her to prefer that I have surgery near her.

And all that cost $1200, and that's before I get billed from the out-of-network labs and stool samples that were done on June 5, and that now are being re-done. All a really good example of the wastefulness in our current health care system. Here you have a doctor who takes no insurance at all, so she does whatever she wants, and I spend down my savings.

I'm not upset as much as I'm angry. My primary care physician said "transmigrating" definitely is not a medical term. And I know there was no reason to repeat blood and stool tests that were done 10 days earlier. And as best I can tell from researching the internet, there's no infection that inflames the abdominal wall other than peritonitis, and she definitely did not say that. Myositis -- the word she did use -- is marked by an ABSENCE of symptoms like diarrhea. So that's not what I have.

So yeah, I'm angry. I don't like spending my savings at the whim of a doctor who's making stuff up as she goes along. So unless the surgeon I see on July 6 tells me this doctor is brilliant and diagnosed something that nobody else on earth has ever documented, I'll be looking for a new Crohn's expert.

After all, if you have a patient with a 35 year history of Crohn's disease who has spiked a SED rate and c-reactive protein, diarrhea, joint pain, sweats and chills, fatigue, and abdominal pain, why are you looking so hard for anything BUT Crohn's disease?

Me? I'm mad as hell. And sick. And left without a treatment plan. For $1200. Yeah, I'm mad as hell. Jennifer

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