Health Update: Gravity 1, Boloby 0

Just call me Lee Majors.

I remember being about 8 or 9 and laughing my ass off every time that Life Call commercials with an elderly woman crying out, “I’ve fallen — and I can’ t get up!” Now there’s Life Alert, which has commercials air several times a day. Only, I no longer laugh. It’s not because I’ve grown up and become a bastion of maturity; I’ll never let that happen. No. What’s harshing my humor is the realization that not only am I not a smart-assed young whippersnapper; I’m actually closer to being the old lady in the commercial.

I think my face was the first thing to hit the carpet.

Indeed, it finally happened just a couple of days ago: I fell, and I had a hard time getting up. It was about 4 a.m., and I had just woken up. Feeling a bit parched, I figured a kitchen trip was in order. But gravity had something else in mind, something along the lines of, “This guy needs to learn a lesson; I’ll give him a good thrashing.”

This would have been bad enough under ordinary circumstances — osteoporosis has done a number on my bones, so much so that I’ve had fractures occur without even knowing — but where’s the fun in that? I need a challenge. And, apparently, the universe seems to indicate that I need pain, frequent and always in a new form. Good thing the antibiotics I’d been taking for an arm infection weren’t working; otherwise, I might not have had a swollen elbow to land on.

Typically, the swollen elbow is referred to as “swellbow.” However, I believe a better description in this case is “elboner.”

Now it’s off to the doctor to take another look at my elbow. I wish they would just drain it and get it over with. However, there seems to be some reluctance, like they’re playing hot potato with me, each hoping the other will take care of me. I’ll be happy so long as I don’t have to stay overnight in the hospital.

HEALTH UPDATE: Good For Now

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!

Video: Boloby at Moonfest

I came across this video years ago but couldn’t find it again until recently. It’s footage from Moonfest 2004 and includes part of a Boloby set. This was our penultimate show, if I recall correctly, with our finale just a few weeks later.

http://youtu.be/5FVkULCujz8

Health Update No. 432

Update (with good news [I know — what’s that?]):
I just saw my gastroenterologist, and she said I’m OK to stop the TPN. So that means I’m not tied to that stupid thing 12 hours every day, and I don’t have to go to JFK every week for labs and dressing change. She wants me to leave in the PICC line for another week, just in case, but unless I go into convulsions or grow a third leg or whatever, I am done, son.

That’s this week. Next week, I’ll be in Miami for a second follow-up with the surgeon (a.k.a. the colon thief or CT), so I’m hoping he doesn’t throw a monkey wrench into all this feel-good sentiment. Last time I saw him, he wanted to know the liver transplant team’s thoughts on how well my liver will hold up after a another surgery (the ileostomy reversal). They said it’s OK, and I’m worried CT will want to get me back under the knife ASAP. I don’t think I need to explain why I’m in no hurry to do that.

How Are You?

“Please don’t ask me how I am/
I have to lie and say I’m fine.”
— The Fastbacks

I couldn’t tell what was causing me more discomfort: the urinary catheter, the nasogastric tube or the numerous IVs dangling from my limbs like strings on a marionette. Then I coughed, and my question was answered — none of the above. I was still writhing in pain from having my guts ripped out a day earlier when I underwent a colectomy, the culmination of my 14-year “partnership” with Crohn’s disease. I looked every bit as awful as I felt, so when the nurse asked me in a cheery, customer service–like voice how I was doing, I wasn’t sure how to respond.

This Ain’t A Contest

Depending on how charitable I’m feeling, I’m filing this under either “Misplaced Empathy” or “Really Bad Attempts at One-Upping.” The same person who in the past has sent me emails, ostensibly concerned about my health but always managing to talk about his/her own health issues (like it’s a competition and he/she is looking for pity points or something; I don’t get it), has just sent another one.

Band Archive: Declaration Of Gary Harris

While I continue working on new material for the blog, here’s an old gem from the long-defunct BillyBoloby.com that I found using the Wayback Machine (Internet Archive). You can read the details of this particular show in “I, Boloby.”

AUGUST 2004

Gary tried to secede from the band on the Fourth of July. Very tactless, I know. Unfortunately for Gary, while his petition had the full endorsement of the other band members (OK, so he only got my signature after signing the document with my severed right hand [don’t worry; it’s been re-attached]), he was unable to obtain the signature of a single senator. So he’s stuck with us, and us with him. Though, the fine print suggests

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.

Boloby.com

It’s official: You can now access this blog via Boloby.com. 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”]).

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.