Meeting of the Minds, Revisited

So I met with the liver transplant team yesterday, though it was really just one doctor, the social worker and a care coordinator. It was a productive appointment, but only because I made it so. I think I made my point pretty damn clear: I’m not going to put up with another post-op experience like with my colectomy.

As I was telling the transplant doctor about my bad time, I could see him start to formulate a response before I was finished speaking, so I nipped that in the bud, stressing that the problem was that no one in the hospital truly listened to me (hint, hint). I explained everything sufficiently the first time, but because that apparently wasn’t enough for the other doctors, I repeated myself just to drive home how serious I was (as serious as, um, a liver transplant).

The care coordinator said she’ll make sure I get to meet with the pain management team beforehand. Because there’s no surgery date for a transplant, we’ll just have to time it to when I’m farther up on the list. I think I’m finally comfortable with having a transplant. Let’s just hope this post doesn’t jinx the entire operation.

Posted in Uncategorized | Leave a comment

It’s official: You can now access this blog via I haven’t had a proper URL in about eight or nine years, since the final days of my old band. I probably should have done this earlier, but at least now I have a shorter, simpler address that people can remember (even if they can’t pronounce it [sounds like “ba-LOW-by”]).

Posted in Uncategorized | Leave a comment

Meeting of the Minds

So I’ve got an appointment this Wednesday to see the liver transplant team at Jackson. If you read my surgery story, you’ll recall that it was one of the team’s fellows who told me not to worry about pain management and basically didn’t want to hear my concerns, as if I were just being silly.

Though I didn’t get his name, I think I’d remember him, if he is still there. And if so, he’s going to get quite a lecture.

Posted in Crohn's Disease, General Disease, Liver Transplant, surgery | 1 Comment

Surgery Part 8: No Place Like Home

You gotta be kidding me — this can’t be happening. OK, so maybe it can, but I’m accepting it only with great reluctance. After four days of feeling relatively normal following the paracentesis, my insides were acting up on the morning I was set to be discharged. It was my final day. I was supposed to be in the best shape since my operation, yet it was 8 a.m. and I was back to feeling bloated and trying to muster the energy to get up. And though my arms were mostly back to their normal, scrawny size, my legs and feet (and my long-suffering man parts) were still pretty swollen.

When I finally did get on my feet, I didn’t feel as limber as in previous days. Now, I was OK with having a little discomfort; after all I’d been through, my tolerance for pain had definitely increased. What worried me was that I started feeling queasy, the same way I felt before that horrible incident on Thursday.

This was the absolute worst time for that to happen. Continue reading

Posted in Crohn's Disease, General Disease, Primary Sclerosing Cholangitis, surgery | 1 Comment

Surgery Part 7: ‘Just Gas’ My Ass!

“Omigod, omigod, omigod … No … stop!”

Yep, that was me again, in a scene similar to the first bed transfer hours after my operation. It was Thursday afternoon, a week and a half later, and I was in the imaging lab about to undergo an MRCP (scan) so the doctors could look at my bile ducts. They wanted to see if the surgery had caused any problems, which had been a concern going in. But first, I had to get onto the MRI bed — a flat, rock-hard slab of back-breaking torture.

I was cursing and screaming at the poor lab techs, who were desperately trying to Continue reading

Posted in General Disease, Primary Sclerosing Cholangitis, surgery | 3 Comments

Surgery Part 6: Ouch, Again

imageAt the very beginning of this story I described waking up on the morning of my surgery: “I was frozen. Stuck. The pain wouldn’t let me move.” That episode lasted about 10 minutes, but it felt like an hour. Well, the same thing happened when I woke from a deep sleep at 4 a.m. Sunday, six days later. OK, so it wasn’t exactly the same; instead of 10 minutes, it lasted about three hours — and the pain was much worse.

It felt like the usual gas pain but a million times worse, like a porcupine was inside me and its quills were continuously expanding, poking into my guts. I really can’t stress enough the paralysis I felt. I thought about calling the nurse, but Continue reading

Posted in General Disease, surgery, Uncategorized | 1 Comment

Surgery Part 5: Movin’ On Up? Not Quite

Getting weighed before leaving the ICU. "It's all water weight!"

Getting weighed before leaving the ICU. “It’s all water weight!”

Things were looking good on Saturday. I was told I’d be moving to a proper room later in the day, and the doctors were very happy with the rate of my recovery. They didn’t tell me this, though. I just had to assume it was the case considering the giant tray full of food they ordered for me.
Continue reading

Posted in Crohn's Disease, General Disease, surgery | Leave a comment