January 25, 2007 at 12:48 pm (Uncategorized)

Greetings from the land of minor procedures gone awry. I have spent the last few days either flat on my back or in a hospital, having a hole in my liver monitored. I’ll save my exposé on anesthesiologists in small hospitals wielding large-bore needles for another day. Suffice it to say that I am -opsied out, after having a colonoscopy and endoscopy performed last Friday and a liver biopsy on Monday.

I’m not sure how to feel about the results I just received. The liver biopsy revealed active sarcoidosis. I suppose it’s good news that I don’t have liver cancer or some type of unexplained cirrhosis. Nevertheless, my primary care doctor described the inflammation as both “significant” and “serious” in one conversation. The GI tests ruled out weird varieties of fungi infecting my esophagus, but did show “granulomatous inflammation consistent with sarcoidosis” in my intestine. So I guess it’s good that I’m suffering from a single “known” ailment, but not so good that this single known ailment is running rampant.

What does this mean? I’m not sure. My primary care doctor is faxing the results to both my rheumatologist and my sarcoidosis specialist. They’ll decide if it’s time to try methotrexate or infliximab or some other new agent. My job is to let the bleeding hole in my liver heal. Most people have no trouble at all with liver biopsies. Apparently, in all things medical, I must be extraordinary. The needle hole from the biopsy bled and leaked bile into my gut, which caused pain at a level I have only experienced once before (during the the 16 hours of labor I endured before demanding an epidural for the remaining 10 hours before my son was born). On Monday, I ended up needing 40 mg. of morphine, which at best only dulled the pain. Unfortunately, the hole kept bleeding; but by promising to be a model patient I twice avoided hospitalization, and after the last CT scan, the radiologist was convinced the bleeding had actually stopped. I’m hoping this is true – though I’m still hurting, and am having difficulty moving slowly around the house.

I don’t think the ordeal of a simple procedure becoming decidedly complicated — or of discovering sarcoidosis in two more vital organs – has sunk in yet. I feel numb about it all, which I suppose is normal. Part of surviving a chronic illness, I think, is not letting bad news hit you all at once. Or maybe the pain medication is making me foggy. “Day at a time,” I keep telling myself.

Thanks for all the comments and good wishes. I’m hoping to respond to everyone individually, but, as you can tell, things have been crazy. But I really do appreciate everyone’s wisdom, courage, and empathy.

1 Comment

  1. Nancy Hebel said,

    Been reading your blog after pulling from the Sarcoid Buddies site – so sorry about all the tests – so sorry about the pain. I do send you strength with my empathy, and enjoy reading, and sharing, your thoughts – N

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