Chopped Liver - A Community for Live Organ Donors and Recipients

Saturday, June 24, 2006


It's a fine line I have to negotiate: On one hand I want this site to be positive, focused on the miracle of modern medicine and of the power we have to give of ourselves to the ones we love. I want this site to be a source of courage and hope for others going through similar ordeals. And, of course, I want to protect the privacy and dignity of my family, especially Joe. But on the other hand, I created this site to chronicle my experience as a donor, and this week, the story isn't funny or upbeat. Joe is going to be fine in the long run, the doctors are still saying, but the path to getting there is proving to be frustrating and cruel. So to be true to my mission, I'll tell the story, insofar as it relates to my thoughts and feelings as his donor.

The question "How is your brother?" used to be one of my favorites, because the news was so good. Everyone loves a happy ending, smiles all around, shakes of the head and praise for the marvels of science. Today, I still value the question because it is so precious to know people are thinking and caring about our situation, and frankly, relieving to be invited to talk about it. But it's a much more tiring question to field these days. I don't know how much people want to hear, and no matter what I don't have enough to tell them, because I don't know enough. None of us do, not even Joe's doctors. Joe just keeps plugging away at the little setbacks, and we keep hoping that next time he leaves the hospital, it's the last time he'll have to do so for a while.

When I talked with one of the doctors at NMH about my plans to convert this site into a larger resource for potential and former donors, she cautioned me to be sensitive to donors whose experiences weren't as positive as mine -- donors whose recipients rejected the organs, donors who never got the chance to donate because the recipient didn't make it until or through surgery, donors who have since attended their recipients' funerals, and donors who suffered complications themselves. I imagine how it must feel for them to answer the questions, and two thoughts come to me. First, I'm better able to truly empathize, and second, while it might be hard, we are very, very fortunate. Blessings counted.

Friday, June 16, 2006

Laughing through the pain with Ricky Gervais

Many of you have asked about Joe -- we're grateful for your concern and kind thoughts. When I left him in Chicago earlier this week, he was in pain but seemed to be steadily improving, and we had a great time laughing our way through season one of the British version of The Office and the newly released season one of Dr. Katz, Professional Therapist. More important, Joe's long-term prognosis is still good, and there is no rejection going on.

I've learned more technical detail about the complications he experienced: hepatic artery stenosis and associated biliary stricture. In English, that means the hepatic artery (which is the primary supply of blood to the liver) collapsed, I think at the point where my piece of artery was sewn to his during the transplant. And then, as is frequently the case, that somehow caused the bile duct (which drains bile from the liver) to collapse, also at the point where mine was sewn to his. If you're feeling adventurous or if you're a scientific nerdy type, you might enjoy reading some of the many scientific articles published on the subject.

Joe's arterial stricture was solved with a stent, and a bile drain tube is currently propping open the bile duct. In both cases, Joe's tubes will heal and remain open independently. Then he's back on his way. And on to season two.

Friday, June 09, 2006

The latest on Joe

I have a new least favorite word: Stricture. (n. An abnormal narrowing of a bodily passage.) Joe has been suffering some set-backs for the past few weeks -- he's jaundiced again, grappling with internal and external drains, and in a lot of pain -- due to strictures in his hepatic artery and bile duct, in both cases located right about where my tubes were sewed to his.

The good news is there's nothing life threatening going on, but the bad news is it's not good health, and it'll further postpone his return to work. Ugh. His condition at any given time does not impact my overall warm attitude about donating, but my frustration is definitely building over the fact that he's not zooming along a rosy trajectory toward life the way it was before PSC.

I'm heading to Chicago today to stay with him for a few days, just to help around the house.

Tuesday, June 06, 2006

Welcome, GretaWire readers!

I am delighted you are here, and my humble thanks to Greta Van Susteren for posting the link on GretaWire.

You have arrived at Chopped Liver during a blessed time of transition.

There is the past: When I began this blog in November 2005, it was primarily to keep my family and friends informed as I attempted to -- and then later did -- donate half my liver to my brother Joe, who was suffering from an autoimmune disease called Primary Sclerosing Colanghitis (PSC). It was also a creative outlet to help preserve my sanity through the stressful and emotional ordeal. To follow the story from the beginning, start with the November '05 archives and read from the bottom up. If you are a potential donor, you may find some of the story particularly interesting, like my play-by-play of the pre-donation biopsy, pictures of my scar, and the before-and-after MRI images I recently posted below on this page.

There is the future: I never imagined then the miracle of human empathy and connection I would come to experience as a result of this little blip in cyberspace. I have communicated with other donors, patients in need, and anonymous well-wishers from all over the world through this blog, and realized that there is a passionate community of us out there that can genuinely benefit from a place to call home on the Web. Therefore, I am working now on evolving this blog into that online community, which will re-launch as in the coming months. If you would like to receive word about this site when it launches, please send me an email to be added to my private distribution list.

And then, there is now: I haven't been writing as much, because there is less to say. (I'm healthy, Joe is getting there, ho hum!) I'm spending my time instead on research and preparation for the re-launch. But meanwhile, there is so much to tell a first-time visitor. So much. Like the following:
  • Of the 92,265 people in the U.S. on the national list for a deceased-donor liver, only one fourth are likely to receive one in time based on current UNOS statistics. An average of 17 people die in the U.S. per day while waiting for organs.
  • The nation's organ shortage is exacerbated by misunderstandings of what it takes to donate one's organs after death. UNOS debunks several myths on its Web site.
  • Living-donor organ transplantation is not the only solution to the shortage, but for many people it is a life-saving option, and thanks to rapid advances in medical knowledge and technology, it is becoming more common. In 2004, UNOS reported more than 27,000 organ transplants, coming from a total of just over 14,000 donors. Of those donors, 7,150 were deceased and 6,990 were living organ donors.
  • The Coalition on Donation offers clear instructions and resources for people who want to enlist as organ donors upon their death. Please, if you consider yourself an organ donor or want to become one, visit this site soon.
  • The complete archives of my blog appear in the left-hand column, below some other relevant links you might find interesting or helpful.
  • I welcome your comments and emails.

Thank you so much for reading this. No matter what brings you here, I wish you health, peace, and courage.

Thoughts and prayers for Peter and Catherine

Live liver donation is in the news in Pittsburgh, where Fox News correspondent Catherine Herridge is having surgery today to donate for her infant son, Peter. Thanks to Catherine's colleague Greta Van Susteren, host of On the Record, the story is also in the news all over the country. Greta wrote about Catherine and Peter on her own blog, GretaWire, and emails immediately began pouring in from people all over who can empathize from first-hand experience.

I joined them this morning, dropping a note to Greta to ask her to get word to Catherine about Chopped Liver, so she knows there is at least one other donor (scratch that -- two donors, right Terry?) who understand what she is going through and are willing to share and connect. Please join me in sending positive vibes and prayers to Catherine and Peter today and ongoing.

Thursday, June 01, 2006

Chopped and Unchopped: The naked before and after liver pictures

As promised, faithful Chopped Liver readers, below are the most naked pictures of me that you'll ever find on the Internet: before and after MRI images! (Warning -- they're graphic -- look away if you're squeamish.) The before shots were taken on November 10, 2005, nine weeks before surgery. The after shots were taken on April 27, 2006, 14 weeks after surgery.

I haven't been over these pictures with my doctor yet, but based on the amount of tissue I see with my untrained eye, it seems to me the volume is back to normal. The shape and position, meanwhile, are, well, off. The doc says that's typical: "For the first few weeks it just dumps tissue as fast as it can," he explained. "Then over the next three to twelve months, it re-shapes itself and moves back to where it belongs."

What he didn't know, of course, is that "where it belongs" is right here, on the Web. And in that case, here it is, ahead of schedule. Enjoy!

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