Care to Share?

I went down to Miami yesterday for preadmission testing and to meet with the stoma nurse. It was a good experience. Not only did I manage to get everything done on time, but the nurses I met with were awesome and answered some of the questions that have been worrying me. I’m still nervous as hell, and now that I have a better understanding of how things will go down, I see exactly how much I’ve got to deal with while I’m in the hospital (besides all the work ahead of me when I return home).

I’m keeping this brief because I’ll be posting another health- and music-related writing that almost reaches the 3,000-word mark. This one’s about the origins of Billy Boloby and his original purpose. Of course, I would love it if everyone reads it, but I know I’ll be lucky if even 10 of you do. However, if you can take the time to share my blog URL on Facebook or elsewhere, that would be very cool.

It’s sad, I know, but this blog is about the extent of my livelihood, now that I can’t perform onstage. I could spend all day coming up with blog content, but without an audience, it’s not always easy finding the motivation. Anyway, before this gets any more melodramatic and whiny, I’ll hand it off to someone who’s more experienced in appealing to audience emotions:

Struthers

Please, I urge you to do all you can to help Mr. Boloby’s blog increase its readership. All it takes is a few clicks of your mouse, and you’ll be fulfilling the wishes of this fine young man. People may call him “meathead,” but that’s not the Boloby I know. Well, most of the time at least. So please, take some time and share this blog with the social media world, and together we can make a difference. — Sally

 

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Dear Colon…

On Monday, June 24, I’m scheduled to have my entire colon removed. While the official reason is because pre-cancerous growths were discovered (complications of Crohn’s disease), and any potential for cancer can affect my placement on the liver transplant list (yes, I need a liver transplant as well), the truth is, we’ve come to a point in our relationship where there are too many irreconcilable differences. I wasn’t sure how to break the news to my colon, so I chose the tried-and-true method of delivering the message — the Dear John letter.

Dear colon,
We’ve known one another for a long time — almost 37 years at this point. For most of that time, we managed to get along astonishingly well, given some of the challenges we faced since you developed Crohn’s disease in 1999. However, the good times are all behind us, and have been for several years. And because that’s not going to change, I think it’s time we go our separate ways.

I know it’s possible I could have treated you with more care over the years, but I think I made more of an effort than most Westerners. More important, though, is that overall I’d say you’ve caused me far more pain than I’ve caused you. Even before the problems began, I ate far less Taco Bell than the average American. In fact, I spent a good number of years trying to make my diet as healthful as possible. When’s the last time McDonald’s was part of my regular diet? Remember all those backyard barbecues, all those prime rib dinners? Neither do I; they never happened — because I loved you.

I wish I had the tenacity to endure one of those all-natural diets that supposedly cure Crohn’s, but by the time I got around to giving it a try, it was too late. And yes, I did give it a try. I threw out all my breads and bought nut flour. I had to make everything from scratch, which wasn’t easy for someone whose idea of cooking started and ended with the microwave. I stayed up all night making that special probiotic yogurt, checking on it every hour to make sure the temperature was just right. This was supposed to be the best thing for you, and how did you react? You pitched a fit. Thankfully, we weren’t in public, but I still didn’t appreciate it.

Another testament to my love for you: that huge bottle of water I carried around everywhere I went, even onstage with my band while an audience full of beer-drinkers made fun of me for being a non-alcoholic wuss. I took it on the chin because I knew staying hydrated was important to you. My reputation never fully recovered.

Or how about the time I learned that ibuprofen is bad for people with Crohn’s disease? Most over-the-counter acetaminophen products make me feel queasy, so Advil was my go-to pain reliever. But because of you, I had to give it up. I’ve been in a lot of pain recently, but because of you I’ve had to just deal with it.

Now, obviously this isn’t a fidelity issue. Unlike my liver, which I plan to replace soon, you’re the only colon I’ll ever have. I mean, I guess you could look at the small intestine as your replacement, but it’s not the same. I will never consider it my new colon. It’ll be more like a semicolon.

Anyway, it’s time I move on. I’m sorry to leave you behind, but I’m sure the doctors in Miami will be very gentle. I know you were a bit close with my liver, so I’ll see what can be done about reuniting you two after the transplant. I’m sure you’ll both have a lot to talk about.

Goodbye forever,

Boloby

Posted in Crohn's Disease, General Disease, Liver Transplant | Tagged , | 3 Comments

I’m Back… Where Are You?

OK, so I’ve decided I’m going to really make this blog happen, and I’m gonna start posting more often, starting with a few articles I’ve written lately relating to my most un-excellent medical adventures. I realize for now I’m pretty much talking to myself, but if you’re someone not named Billy Boloby, I encourage you to share my blog with others.

For my first post, I’ll republish an article I wrote for Purehoney magazine.

HEALTH ‘CARE’ JOKES

The healthcare industry is rife with irony. Oh, it’s got a sense of humor; just be prepared to be the butt of the joke. 

Here’s a good one: A patient in need of a liver transplant is told by his surgeon that he had lost too much weight to undergo such a rigorous procedure, that the patient looks like he could fall down at any minute, and that it was so serious that he would have to spend some time in a hospital receiving intravenous nutrition (total parenteral nutrition, or TPN), which would get him back to a manageable weight. The patient agrees and goes to the hospital, only to get the bait and switch. Instead of TPN, he gets put on a liquid diet, followed by fasting so he could undergo a colonoscopy (his fifth one in almost as many years). So not only did he not get the extra calories he needed; he got even fewer than normal — and the comfort of knowing there’s a nice big hospital bill on the way.

Funny-ha-ha, right? The joke’s not over yet. 

The hospital doctor calls the patient a week later and tells him the colonoscopy results reveal that the patient’s colon needs to be removed due to numerous “pre-cancerous” polyps. The doctor says he needs to confer with some other doctors before any more information is known. Talk about dropping a bombshell.

Finally, four days later, the patient gets some good news. The doctor says it’s possible to do both surgeries during the same hospital stay. Things are looking up. Not only that, but the patient will be getting TPN at home to get in shape for surgery. And he’ll be able to receive it at home — no more hospital stays until T-Day.

The patient receives a call from his local doctor’s office, which is arranging to have a home healthcare service handle the TPN. He is told that the insurance company authorized everything, and he just needs to go to an outpatient center to have a PICC line (catheter) for the IV installed in his arm; a nurse would come by the following day with the TPN. He gets the PICC line installed and is at home waiting for the nurse. The nurse calls and says she’ll call back to let him know when she’s coming. A second nurse calls and says she’ll call back. A “nurse coordinator” calls… yada, yada. They all leave him hanging. Then the pharmacy that has the TPN calls and tells him his insurance company won’t cover home infusion.

“But my doctor’s office already had this authorized.”
“Sorry.”
“What do I do?”
“Not my problem.”

OK, so she didn’t say that, but that’s what this conversation and the six or so others I had that night — yes, I’m the patient — amounted to. They were washing their hands of this problem and leaving me to solve it. Because, you know, I understand jack shit about home health infusion and can easily get in touch with anyone on a Friday night.

Though my gastroenterologist was out of town, I emailed her, and she replied within a half-hour, saying I should just go to the ER the next morning. So much for home service.

I went to JFK Medical Center, and while the staff was great, the entire first day there was frustrating as hell because I didn’t know what was going on — and I still wasn’t getting the TPN. But because I threw myself at the feet of the healthcare industry, I became a problem that had to be solved. I started TPN the following evening, and on Monday morning, straightened out my insurance company and now receive TPN at home.

Of course, the last laugh will once again be on me, the butt of the joke, when this hospital bill arrives. I always knew I’d be in for some financial strain because of the liver transplant, but since I’ve had these two unforeseen hospital visits — and now need a colectomy, which will require at least two surgeries — I think the only thing I can do at this point is to laugh along with the joke. Because when I get the bill for all of this, I’m going to have myself a good cry.

In the meantime, my good friend Devon Nelson set up the Billy Boloby Benefit event, set for 8 p.m. Saturday, April 20 at Little Munich (806 Lake Ave., Lake Worth, 561-932-0050). He also created a fundraising page at GiveForward.com (under “Jason Budjinski”). I’ve got a huge ordeal ahead of me, but this gives me some much-needed motivation to stay strong. Of course, TPN helps, too. ~Jason Budjinski

Posted in Crohn's Disease, General Disease, Liver Transplant, Primary Sclerosing Cholangitis | Leave a comment

Fundraiser

My good friend and former bandmate Devon Nelson started a fundraising page for me. Here’s a link: http://www.giveforward.com/fundraiser/7p32/jasonbudjinskisurgeryrelieffund

 

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Lots of Words

In December 2012, New Times Broward-Palm Beach published an article I wrote about my situation vis-à-vis being a performer. Originally, the story was going to be a 4,000-word feature, but stuff happened and I ended up rewriting it entirely. Here’s the original version, in all its verbosity.

I was lying unconscious on a gurney, surrounded by an emergency room doctor and his team. On the other side of the room was a group of medical students observing the procedure, which was as grim as it gets: My heart had stopped, and the doctor was tasked with bringing me back. However, this wasn’t an ordinary hospital, and the doctor lacked conventional hospital equipment. In lieu of a defibrillator, he had a pair of jumper cables hooked up to a guitar amp.

“Clear!” the doctor shouted as he pressed he cables to my chest. It took four attempts, all evenly paced in four-four time. In fact, one of the doctor’s team members was playing the drums, and the other two were playing guitar and bass. The gurney? Well, it was a lifeguard rescue board.
Continue reading

Posted in Crohn's Disease, General Disease, Liver Transplant, Music, Primary Sclerosing Cholangitis, Uncategorized | Leave a comment

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.

Posted in Crohn's Disease, General Disease, Liver Transplant, Primary Sclerosing Cholangitis, Uncategorized | 1 Comment

[Welcome]

I’ve been in numerous bands since the early ’90s, but that’s all in the past now because of some health problems. Because I can no longer perform, I started this site so I’ll have some kind of creative outlet and somewhere to put The Boloby Manifesto and I, Boloby. Right now, I’m awaiting a liver transplant, though my lab tests have improved over the past few months, and it may be a while. I’ll start providing updates once it gets nearer to T-Day (when things start going south), and I plan on documenting as much of my experience as possible. Until then, I want to get the word out about this site, so please, read on… and pass it on!

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