A Nice Chianti, Anyone?

October 11, 2006 at 12:09 pm (Uncategorized)

Like most people, I don’t spend much time thinking about my liver.   It is a distinctly unsexy organ.  Unlike the mercurial heart, always thudding and announcing its presence in your chest, or your high-tech brain busily making you crazy, your liver just lays there, large and flabby.  The poor liver’s one shot at notoriety came with Silence of the Lambs, when the mass-murderer and epicurean Hannibal Lecter recalls consuming a victim’s liver with fava beans and a Chianti.

However, in the past few days, my thoughts have turned to my liver (sans beans or wine) after some routine blood work revealed that my liver levels are out of whack.  Ever since I was diagnosed with sarcoidosis in 2003, my liver has been affected.  From what I understand, it’s fairly common for the disease to impact the liver, but the consequences are rarely serious or fatal.   Very few sarcoidosis patients ever need a liver transplant.

What puzzles my doctors is that my liver tests continue to worsen, even though the sarcoidosis in my heart and lungs seems to have improved on prednisone.  The results are apparently bad enough to warrant a battery of new tests to rule out other liver problems.  I have an ultrasound later in the week, and have already had eight vials of blood drawn to look for things like Hepatitis C.

When I found out that my primary care doctor was screening me for Hep. C, I was confused.  Although I’ve picked up quite a few bad habits over the years, like drinking epic amounts of coffee, obsessively biting my nails, and surreptitiously reading entertainment magazines, I have yet to take up intravenous drugs.  I told my doctor this and she said, “Well, we just need to be sure.”  I sense that my liver will become yet another diagnostic puzzle that the white coats want to solve. They will likely fail because they are doing the equivalent of fishing by firing a shotgun into a darkened pond inhabited by one fish.

I spoke with my sarcoidosis specialist in Philadelphia about the significance of the worsening liver function tests in relation to my sarcoidosis.  She was very nice and chatted with me for a while, but really, all she did was tell me nine different variations of “I don’t know.”  It’s the same old refrain every sarcoidosis patient hears over and over: not enough data, not enough data, not enough data.   If the sarcoidosis is indeed resurging in my liver, she said that, yes, it could mean it is staging a comeback throughout the rest of my body, or it could simply mean that the disease has decided to vacate my heart and lungs and occupy only my liver.  The image of hundreds of renegade granulomae converging in the depths of my liver to hold a techno rave distracted me.  Then she said it could be another liver problem, like cancer.  That got my attention again.

I was pretty upset after learning all of this.  It felt like I had been given the world’s shortest reprieve a couple of weeks ago in Philadelphia when I got permission to continue tapering off my prednisone.  One minute, everything is looking better, and I am optimistically envisioning a future with fewer doctors; the next, I have a social calendar consisting entirely of medical appointments and testing.  It would be thoroughly depressing if it wasn’t so familiar.  Also, being the naturally sunny person I am, I immediately assumed I either had metastized liver cancer, or that the sarcoidosis had returned to my heart and was at this very instant causing irreparable harm.  It took me a few days to talk myself down from this psychic ledge.  I didn’t turn on the computer because I knew I lacked the self-discipline not to immediately look up liver problems on the Internet, and thereby truly cause some heart damage by reading every possible worst case scenario.

This is what having a chronic disease entails, right?  I will always have to deal with it, and I will never move entirely out of its grasp.  As my sarcoidosis specialist said, I need to wait and see.  If I wasn’t so concerned about my liver, I’d opt for plenty of nice Chianti to help me with the waiting.  Instead, I’m having tea.  As for the seeing, I’ll leave that to the White Coats.  What else can I do?

3 Comments

  1. Marianne said,

    Have they looked at the possibility that you don’t have a liver? Maybe that is why all of your tests are abnormal. Just a thought. I have many like this daily.

  2. Paul said,

    Rebecca

    You got it right – this is what having a chronic disease is like – being poked and prodded by white coats who seem to not ‘get’ the systemic nature of the disease and then get excited when they get an abnormal result that they think they can ‘treat’ (ie they get to try some other new drug with weird side effects that they have been waiting for an appropriate guinea pig – sorry patient – to try it)

    Sorry to rave on – perhaps the Chianti is the best answer

    Anyway try not to worry too much – have a good day

    Paul

  3. Paul said,

    I’m with Marianne – the lack of a liver could have caused the abnormal results !!

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