Normally I would use this blog space to talk about things that somehow relate to everyone’s life. This topic, however, is unique to this “lucky” guy. I’ve had so many kind people asking about it, I thought I’d report the latest strange development. If you want more background on the story, read my blog entry titled, “I Got Tube Babe” from May 30, 2010.
Here's the latest twist in the ongoing mystery of The Incredible Vanishing Tube:
So I go to the cardiologist today, and had an ultrasound exam done. The doc says he's been getting mixed signals from the radiologist who read the CAT scan, from my other doctors, and even from my medical records. He couldn't figure out if the tube in my chest had moved, had broken off during last year's removal attempt, or (as some records suggested) may have been there since shortly after its implantation, all the way back in 1998.
It's almost funny seeing the looks of puzzlement on the doctors' faces anymore. What isn't funny is what I saw for myself when they performed the ultrasound.
Up to now, the question has been, "Is the tube in the liver, or is it still adhered to the subclavian vein in my upper chest, where the surgeon left it?" Well, guess what. The answer is ”yes,” to both questions! It’s still adhered to the subclavian with the far end tickling my liver.
Turns out, that cannula (tube) is much longer than anyone imagined. Why the original surgeon chose such a long tube for me is a mystery. Not only is it exceptionally long, but my torso is shorter than most, because of scoliosis and just the usual traits of a person with Spina Bifida. So apparently, it goes all the way from one end of my guts to the other...nice!
You might think this takes things back to status quo, wherein we were just going to leave it, assuming it would grow into the vein and be harmless. Well, that was when we thought it was a little short tube -- and not the Alaskan Pipeline. Now, we can’t just assume it’s safe, and do nothing. The danger comes mostly from clots forming on the tip that sits in the hepatic (liver) vein.
My doctor ordered a second ultrasound, to get another look at it. With those results in hand, he made some calls. Nothing concrete was decided, so he’s going to gather as much of my past medical history as he can find. Then he’ll convene a sort of roundtable discussion, with a vascular surgeon, a hematologist and whomever else he can think of, to come up with a risk/benefit analysis for surgery. Removing the tube would now be a very dangerous venture. However, leaving it in there might be just as dangerous. The saga continues.
Sometimes I wish I hadn't signed up for cable. :-(
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