Chopped Liver - A Community for Live Organ Donors and Recipients

Wednesday, November 30, 2005

Did You Know?

John M wrote to tell me that as he was reading Chopped Liver, the word "Prometheus" inexplicably popped into his head. He looked it up, and discovered that his brain had made a subconscious connection:

"Aside from being a rebel god punished for: 1) creating humans in the image of gods, and then 2) providing humans with the gift of fire, he was banished by Zeus to a place where his liver was eaten each day, and then healed every night. In the medical community, the Prometheus System is sometimes used as part of liver dialysis.

"In fact, Rockefeller Center is a virtual shrine to Prometheus. According to Wikipedia, the golden statue of Prometheus stands at the head of the central fountain..."

Upon further exploration, I learned that Prometheus' liver was eaten specifically by an eagle, as depicted in this 1868 painting by Gustave Moreau. I suppose a hungry eagle would hurt far worse than a Bard sampler. Consider my blessings counted.

Tuesday, November 29, 2005

The best-looking liver sample in the world

Wow. Liver biopsies suck.

But it's over with, and just four hours after the procedure, I've got a belly full of food and not too much pain. My morning started at 8:00, and after I'd changed into my backless gown I stressed to the team that a new name is really needed for this fatty infiltration thing. They sympathized and called me skinny. I suddenly felt love for them.

By 8:30 this morning, the doctor was showing me my liver on an ultrasound machine. It was a blob, with some dark lines and spots here and there. "What are the dark spots?" I asked her. "They're veins and ducts," the doctor said. And then, from right behind her, my friendly nurse practioner piped up. "They're globs of fat. Big huge globs of fat." A wonderful laugh was had by all.

About two minutes later, I had two black Sharpie dots and one yellow highlighter dot on my side, and 30 seconds later, I had a novocaine-filled needle giving me a vicious bee sting in the ribs. I'm not entirely sure why the use the novocaine to begin with, because not only was the injection itself painful, but what came next was anything but numbed.

The implement used for liver biopsies is called a Bard sampler. From a handle like that of a mid-sized Philips screwdriver extends a tube--the "needle"--that was at least one foot long. It was 1.6 centimeters in diameter, and built to extend only 22mm of its available length into the body. It felt awful going in, and worse coming out. And then, swoosh, she dropped my liver sample into a little vial of liquid, like a teeny reddish tequila worm. "Hm, it's small," she said to the nurse practitioner, who promptly agreed. "Sorry, but I've got to stick you one more time," the doctor said, as I steeled myself for a second round of that terrible stabbing pain. The second time, I couldn't breathe for at least ten seconds after it was over. Good god. I don't recommend biopsies for fun.

The second sample was a much thicker, substantial worm, though, and we all oooed and awwed over its perfection as a sample as it floated in the clear liquid next to its scrawny sister. At that point, the doc gave me some good news: "Fat cells are white, and in some people with fatty liver you can see it -- the sample looks almost all white. Yours looks fully pink. I suspect you're going to come out just fine."

And then the nurse gave me better news: We should know the results by the end of the week.

And then I laid on my side for three hours. And now I'm off to the airport. Stay tuned!

Monday, November 28, 2005

One if by land, two if biopsy

Tomorrow's the big biopsy day; I'm flying to Chicago tonight. I start my day tomorrow at 8 a.m., and after the requisite hours of waiting around doing nothing, the procedure will take about 20 minutes. They'll numb my torso, and then stick a needle in through my abdominal muscle and into the liver to take little pieces from throughout the organ. There's a decent description of the procedure here. I wish I knew how long it will take to get the results, but my family is optimistic that I'll be cleared. We still hope we could aim for a surgery date in early December.

On an only slightly related topic, does anyone else think it's unexpected that when you search for "liver biopsy" on Google Images, you get a headshot of Anthony Hopkins in addition to this informative graphic here? He looks marvelous. Must have had a great liver biopsy.

Wednesday, November 23, 2005

Rolling out the red carpet...

It appears the official release of Chopped Liver has occurred! I'm happy to welcome my extended family to this site--especially to those of you who haven't seen or heard from me in years. I have to give it to crisis: It does work wonders at bringing scattered family and friends back together.

For those of you visiting for the first time, I encourage reading this from the bottom up. Also, note the links in the right-hand column, including one that explains Joe's disease better than I can. Please feel free to leave comments, email me at any time with questions, or contact my parents for my number if you'd prefer to call. And thanks so much for your concern and support!

Monday, November 21, 2005

A blast from the past

I found this article from the Mayo Clinic dated 1999 -- the year the clinic executed its first live adult liver transplant in Arizona. It's weird to read something from just six years ago that seems like ancient history. And whaddaya know, the recipient was suffering from PSC just like Joe. I'd love to talk to these guys today. Road trip!

Sunday, November 20, 2005

Workin' some numbers

The numbers I should be working tonight are calculations of RONA and EVA and target costing for my managerial accounting final tomorrow night, but I'm feeling lonely and sad and introspective, so instead I've crunched these: There are more than 17,000 men, women, children and infants on the national liver donation list in the U.S. right now. Only about 4,500 cadaver organs will become available this year. And according to the transplant team at NMH, only 5% of the nation's adult liver transplants come from live donors.

So let's be generous and assume there are 5,000 liver transplants done this year. Five percent of those are from live donors -- that's 250. Just 250 people, out of a U.S. population of more than 297 million. Geez, no wonder I feel lonely in this situation!

Meet my fatty infiltration

copyright 2001 Bauke Schildt, used with permissionCrap. I got mixed news last Friday from the transplant team. The good news is I’m anatomically perfect for donating—ample volume, good duct placement, etc. But the bad news: I have something that is cruelly, dreadfully named “fatty infiltration” in my liver. In other words, my liver is home to a noticeable number of fat cells, which I have intuitively chosen to demonize, imagining a little crowd of beer-gutted gremlins that look just like this guy.

Fatty infilitration usually appears as a symptom of alcoholism and obesity. I trust you all know I’m neither obese nor an alcoholic. (Hey, stop giggling, Iowa State people!) Seriously, it was comforting to learn from the transplant nurse and my doctor brother that almost everyone has at least some fatty infiltration—they just don’t all go around getting MRIs every day to look for it. You probably have some too. (Except for you marathon-running people—you know who you are!) This causes no harm to me, and like any other fat, I can reduce it by eating better, exercising more, and drinking less. Liver transplant or no, I plan to kick it out by living a healthier life.

As for the transplant: They can go forward if the fatty infilitration (ugh—I hate that phrase—I’m just going to call it “Larry” from now on) isn’t too extensive. But if Larry has taken over and strewn his bulbous mass all over the place, a transplant could put Joe in danger. Unfortunately, the only way to determine Larry’s dominance is to do a liver biopsy, which has to be done in Chicago. It’s either that or withdraw from consideration. So I’m off to Chicago for a date with a needle!

The biopsy is scheduled for November 29. I’m not sure how long it will take to get the results back.

Friday, November 18, 2005

Did you Know?

The scar liver donors are left with is nicknamed “The Mercedes Benz” because its shape resembles the luxury car’s logo (without the circle). It starts in the middle of the torso and extends along the bottom of each rib cage, with a small line straight up. My brother and I should get cars to match our scars, dontcha think?

By popular demand: Q&A

What’s wrong with Joe?
He has Primary Schlerosing Cholangitis (PSC). (Football fans: This is what led to Walter Payton's death, although his disease progressed to cancer, which my brother's hasn't yet done.) It’s a rare auto-immune disease that attacks the ducts leading into, through, and out of his liver. A liver transplant will cure him, but he’s stuck in a Catch-22: Thanks to the progression pattern of PSC, he won’t score high enough on the national organ donation registration list to get a deceased-donor organ until he’s so bad that an organ transplant wouldn’t do any good. So a live-donor transplant is his best hope.

What’s the likelihood you’ll be accepted as a donor?
Given my health, age, and the law of averages, it’s about 80% likely.

When would the surgery take place, and how long would recovery last?
The first week of December at the earliest. After six weeks, I’d resume some normal activity, including spring semester’s Ops Management class, yippy skippy! But I probably wouldn’t be back to work for a full two months.

What are the worst risks to you?
According to the pleasant, flight-attendant-like woman in the video I watched at the hospital, the rare severe side effects of the surgery are blood clotting, bile leak, and death. Key word: Rare.

Is the transplant team at Northwestern Memorial Hospital any good?
They’re among the top ten live-liver-donor transplant clinics in the U.S. The surgeon is world renown for this specialty. Sounds like I’d be in pretty good hands.

Egad, will you have to give up drinking?
Already have, in fact. But not permanently. The liver returns to full function and eventually I'll be able to do everything I can do today.

Are you terrified?
You know, not really. In Chicago I met a woman who had donated one week before. She’s 50, and she looked great. She was walking around, she had good color and some energy, and most important, she was practically glowing with joy because her liver recipient was feeling so much better. I won’t say I’m not scared, or that I’m looking forward to the pain and permanent scar. It just all pales in comparison to the amazing benefits. That said, talk to me in a couple of weeks…

Welcome to Chopped Liver!

Welcome, friends, to Chopped Liver, my new blog about my quest to become a liver donor for my brother, who is suffering from Primary Sclerosing Cholangitis. After pressure from my techno-savvy friends, I'm venturing into blog territory for the first time. The entries will get much shorter once I've caught everyone up to date. Hope you enjoy!

Last Thursday, I spent the day in the organ transplant unit of
Northwestern Memorial Hospital in Chicago, which not only boasts one of the top ten liver transplant teams in the country, but also is where Joe is serving his medical residency. This was my official “work up,” the process by which I am officially accepted or rejected as a donor. Only one person at a time goes through this: If they accept me, I’m “The One,” and the surgery will be scheduled as soon as possible. They drew 17 vials of blood and did an MRI, which will be used to assess whether I’m physically healthy enough and anatomically matched well enough to donate. I also met with a psychiatrist, who (bless him) determined that I am not certifiably insane, and had a complete physical with a non-transplant-team MD.

What's next:
They'll need to determine whether there are any factors that would keep me from donating, such as:

  • a liver of insufficient volume
  • a liver that has an abnormal right lobe/left lobe split (i.e. 70/30% instead of the normal 40/60%)
  • anatomically inconvenient placement and size of the ducts, veins, and arteries flowing into, out of, and through each lobe
  • any blood-borne diseases, cancerous growths, etc.

If I clear all these hurdles, we'll schedule the surgery. I should get results by Thanksgiving. Stay tuned!

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