Living a Neo life in bullet time….

I’m not bulletproof, not by a long shot. If I were, I never would have developed primary sclerosing cholangitis (PSC), the liver disease that destroyed my liver, necessitating my transplant back in 1997. However, in some ways I have been able to dodge certain bullets that surely would have done me in. i didn’t get bile duct cancer, a risk with PSC. I had a two rejection episodes, one four days after transplant, and another in 2002. Again, a risk with transplant life. I survived a major infection in my liver in 2007, that was first thought to be a return of my PSC, but wasn’t, thankfully. Now, after seeing my liver function numbers go haywire since September of 2013, with no apparent rhyme or reason, the specter of  PSC return was rearing its head again.

These numbers started fluctuating, oddly enough, two months after I was put on generic Lipitor by my primary doc. Now if you pay close attention to TV commercials, you’ll know that while Litpitor helps with cholesterol, it can do funny things to the liver, including elevating liver enzymes, which are an indication of damage to the liver. This is initially what happened to me. The transplant team actually gave my primary doc the OK to proceed with the Lipitor, so I wasn’t too worried…until this past September, when my numbers went screwy.

I immediately contacted my primary doc and transplant team, and told them I was taking myself off of the Lipitor, and we’ll see what happens. Some numbers got better, some didn’t. One of the most important of these is a measure of the amount of bilirubin, a yellow pigment that gets released when red blood cells die. It’s what makes people with liver disease become jaundiced. Mine was elevated, not terribly, but the fact that I haven’t seen my bilirubin elevated since my rejection in 2002 got my attention – and raised the hackles on the back of my neck. I somehow knew this wasn’t rejection. It didn’t feel like it.

So, it was a watch and see game. Several of the enzymes started coming down on their own. Some fluctuated. the bilirubin however, didn’t budge. I began to wonder if the Liptior damaged my liver somehow. I posited this question to my transplant coordinator, who didn’t disagree with the possibility, but also brought up the demon again. It was not out of the realm of possibility that my PSC was coming back, and this time the pattern might very well have fit.

The only real symptom I had was a weight loss, noticed by friends. I lost about 11 pounds. I wasn’t sure if this was related to the liver, or maybe a flare in my colitis. In short, I was in a mild state of denial. Still, the transplant team just watched, and then the thing that really got them concerned was that my white blood cell count started steadily climbing as well. This meant infection. The problem was, I had no fever, no pain, no nothing.

About two weeks ago, things started moving with speed. Two types of MRI’s were arranged, a standard one, and something called an MRCP (Magnetic Resonance Cholangiopancreatography). The MRCP is specifically designed to use contrast to “light up” the bile ducts. It’s not the gold standard in diagnosing PSC. For that I would need an ERCP (endoscopy with dye), but because of the way I was rearranged internally during the transplant, an ERCP is far more difficult to do. I had one pre-transplant. They’re not fun.

So, I had the MRI’s this past Saturday. I went back to Strong today to speak with the transplant hepatologist (liver specialist) about the results. What was found surprised even me. I apparently have developed “micro abscesses” in multiple areas of my liver. These are NOT tumors, but small infections, that might have started in a bile duct, and spread out ward. The doc wasn’t totally sure. He also wasn’t totally sure that my PSC has actually come back. All these problems with my numbers might very well be the result of the infections. He did however say that there were a couple of bile ducts that did not “look quite right,” but stopped short of assigning blame to PSC.

Treatment? Well, they took blood cultures to see what is growing, but for now, two oral antibiotics. Depending on what they find, I might need to spend a couple of days in the hospital for IV antibiotic treatment, but hopefully not. Two weeks after that, another MRI to see if the abscesses have gone away.

So, here I go again, moving in bullet time to avoid those things that I know would hurt me a lot more. What if I told you…

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5 thoughts on “Living a Neo life in bullet time….

    • Thank you Michael. Meredith will remember well the last time something like this happened with my liver. It was when I was doing The Water Engine with her directing. I got admitted just right at the start of rehearsals. I threatened her with bodily harm if she recast me… 😉

  1. Oy! I know I’m not your Mother; lucky for you, you still have one. But I do worry about you, since you are susceptible to these liver vagaries. And losing 11 pounds! I am happy for you that this appears to be infections in isolated bile ducts, and not PSC.

    BTW, this is another good opportunity to encourage friends to become organ donors. Love to you my fried, and be well.

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