I spent Wednesday down at the Miami Transplant Institute, where I had a very informative appointment. As always, it was a mix of the good, the bad and the “who knows.” Oh, and a possible “light at the end of my present tunnel” as well, so says my hepatologist.

Despite getting off to a rocky start — the fire alarm went off, and we had to evacuate the building for a bit — things went smoothly for the most part. It certainly helped that I talked with only three people and didn’t have to repeat myself was exactly who I needed — not some know-nothing, condescending fellow, like I used to get stuck with. Instead, I was brought in by my new nurse coordinator (who is great — very affable and suitably experienced in dealing with liver disease patients). Besides my regular hepatologist (who used to be left out of these team appointments for some stupid reason), I met the new chief of liver transplantation (or whatever his title is), who was way younger than I expected but seems very competent.

Now on to the fun stuff.

The good: Going by my latest labs, taken a week prior to the visit, my liver’s still in decent enough shape, leaving my MELD score just hovering around the “OK to operate” mark. The bad: If I did all of a sudden need surgery, it ain’t gonna happen. The doctors said the combination of my spine and lung problems make it unlikely I’d be able to recover from surgery. None of this is surprising and pretty much confirmed what I already thought. But it was good to hear them say it.

I brought up the matter of my runaway dental surgeon, explaining how I was referred to him for the removal of my bottom wisdom teeth, but he had a panic attack and threw up his hands after learning of my condition and thinking of the many things that could go wrong while I’m under anesthesia. The doctors said they’d have the nurse coordinator find a dental surgeon who can handle me. I’ll bring some Xanax in case I get another Nervous Nellie.

Regarding my continued inability to gain weight, the hepatologist said it might be the disease’s effect on my testosterone level. My response, of course, was to break out in laughter, thinking about that goofy AndroGel commercial (“My doctor told me I had low ‘T.’”) But he told me if the level is low, he’ll put me on something to help fix it, which would also give me more energy and allow me to put on some pounds (so I can stop hearing everyone say, “Oh, how about if I give you some of mine!”).

Finally, before I left, the hepatologist mentioned a new trial drug that works miracles or something. Of course, testing has been limited to rats thus far, but a trial for women was starting soon, he said. So far it has basically cured inflammatory bowel disease, psoriasis, multiple sclerosis and other diseases of the immune system. He mentioned the possibility of me trying it out early next year, so I’ll likely play along.

Granted, I’ve taken part in one of these miracle drug studies 10 years ago. Not only did the drug turn out to be a failure, but after being promised I would not be put in the control group (which is given the placebo), they went ahead and put me in the control group. So despite my doctor’s enthusiasm for this new drug, my expectations are severely tempered. But hey — at least I won’t have to try fitting it in to my lunch break. I don’t have a job!

This entry was posted in Crohn's Disease, General Disease, Liver Transplant, Primary Sclerosing Cholangitis, surgery. Bookmark the permalink.

2 Responses to HEALTH UPDATE: Good For Now

  1. What is the miracle drug? Campath? Anti-LINGO-1?

    • boloby says:

      I don’t remember the name. It was like four-letters long or something. I will post an update if I learn more about it, though I’d be surprised if that happens.

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