A Slight Setback

On Feb. 19, I went to Miami to meet with the Jackson Memorial Hospital transplant team Feb. 19 for a follow-up from my initial visit a year ago (March 2012). Before we could even discuss my liver, the doctors asked me how I lost so much weight.

A year ago I weighed about 130 pounds. This time it was under 100. I’m not sure of the exact weight, as the Jackson scale read 80 pounds, but every other scale — including those of two other doctors — put my weight at 94-95 pounds. Either way, the bottom line was that I was in no shape to undergo a liver transplant. The head doctor wanted to put me in the hospital right then, but I was caught off guard and got a bit defensive, and they let me go. But it wasn’t long before I realized he was right.

So on March 1, I entered the University of Miami Hospital for a five-day stay, so I could meet with a dietician, undergo a series of tests and procedures to see what’s causing the weight loss. Not surprisingly, they didn’t find the culprit, but some other serious problems were revealed and taken care of (most notably, my dangerously low potassium level).

So I’m back to my normal routine of various tests and procedures every few months, hoping my condition doesn’t worsen any further while I wait at the bottom of the transplant list. Anyway, here are some pictures from my hospital “vacation,” Friday, March 1 through Tuesday, March 5.

UM Hospital 1Friday: Having recently arrived, I’m learning how to use all the gadgets in the room. This is the remote for the TV, which also controls two lights and has the nurse call button.

UM Hospital - CheersI began my liquid diet on Saturday. Here’s my mom sharing a water toast with me.

UM Hospital - before procedureMonday: I’m all plugged in as they prepare to send me into the procedure room.

UM Hospital - teamSome of the “G Team” members visit me in my room (“G” meaning gastroenterology). I felt like a patient in a House episode. I also felt like an old man, given the average age of the G Team members.

UM Hospital - PeshpandeThe head G Team doctor gives me the latest update. For me, an “update” means a few small findings followed by mentioning that I need another test or procedure a month or so later. The tests never end for me as a patient. (Indeed, my patience is always being tested.)

UM Hospital - WheelchairTuesday: I’m on my way out. Nahomie, one of the nurses, volunteers to wheel me down to the exit. She was one of the many great people who made my stay a lot more tolerable.

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

1 Response to A Slight Setback

  1. CK says:

    Sending all good vibes your way Billy!

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