February 28, 2005 means something very different for me. Not a leap year. Our family was anxiously waiting for the live donor transplant operation to be completed at the Mayo Clinic in Rochester, Minnesota. Not one, but two relatives were anesthetized, and undergoing a life saving procedure: one giving and one receiving.
My sister-in-law Blair was being the ultimate mother and donating half of her liver to her daughter Katy this afternoon. A complicated and lengthy set of protocols, tests and biopsies got them this far but reattaching the blood vessels to the new half of a liver ( just extricated from another human being who was healthy) is beyond normal comprehension. Greek myths, one of Dante’s hells and the "X Files" all expound on the regenerative power of the liver cells to reproduce quickly. Both halves will be 95 per cent full size in 3-4 weeks after the surgery.
Primary Sclerosing Cholangitis (PSC) attacks the large bile ducts in your liver. Doctors don’t know for sure, but it is thought to be an autoimmune disease. Immune cells that normally attack viruses and bacteria turn on the liver and slowly thicken the bile and scar the bile ducts. Eventually scarring (Sclerosis) interferes with the health of the liver and it hardens (Cirrhosis) and quits functioning. Bile thinners, opening bile ducts and placing stents in the main ducts can prolong the liver’s operation but a transplant is the only known cure at this time. Viral or bacterial infections are thought to be the triggers of this rare disease.
Blair had moved up to New England with her 2 year old daughter Katy to live with us for awhile. A 5 month temporary stay turned into 16 years as an extended family. Now we were separated - two in the operating room and others in the waiting room and at home. We had all applied to be the donor but Blair was the perfect match. She seemed to know it would be her from the beginning. You could see it in her relaxation now but she had trained hard to be in the perfect shape for this operation.
Katy with curls and a smile had constant adult companionship growing up. Uncle, aunt and mother paid special attention to Katy as she said "Talk to me, play with me, ask me questions." She grew up knowing that she was loved. She played in restaurants, ball parks and the back row of coach traveling the world in a B-747. She read constantly and studied all the way to Wellesley.
My niece Katy had been diagnosed 10 years ago when she was twenty-one and her liver had slowly (over 7 years) progressed to stage four (the start of liver failure). With ten thousand plus patients awaiting a new liver and only two to three thousand liver donations after fatal accidents in the United States, you can see why the average recipient of a cadaver liver is living with a non functioning liver near death just to get to the top of the list. A non functioning liver affects all of your organs and creates its own set of problems before and during surgery. Finding a donor and undergoing this surgery you get part of a liver five to seven years earlier than you might otherwise have to wait.
Walter Payton, the hall of fame NFL running back had PSC but died of liver cancer before he could get a transplant (a fairly common occurrence unfortunately). Another famous athlete Chris Klug who had PSC and underwent a transplant as a young man won a gold medal at the Salt Lake City Olympics in snow boarding with his new liver and life.
Luckily mother and daughter are doing fine with regenerated near normal sized livers. Although there can always be complications in the future and the recipients must be on anti-rejection drugs the rest of their lives, the living donor transplant operation is the only way to relieve the long wait for a new start on life. Nine years went by day by day with Katy’s life slowing down, jaundice setting in and fear of cancer always on her mind.
This disease stole Katy’s twenties and almost took her life but while waiting for her fate to unfold she volunteered and worked for Americorp in Boston managing a program of seniors tutoring elementary age students who needed one on one reading skills improvement. Katy has started a new decade of life with health, energy and a new career. She’s getting her Masters and teaching credentials as a pre-school teacher where the kids ask her to "Talk to me, play with me, ask me questions." And she does.
Tuesday, April 22, 2008
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2 comments:
Grace knows I worked on this article last semester but I just submitted it to the Newsweek-My Turn editor last week when I read lesson 5. April is National Donate Life month! Now is the perfect time to grab a new organ donation or transplant awareness card and let your family know. Thanks, Kevin
Kevin--this is great. You did an amazing job. I'm glad you submitted it to my turn. It's really strong. Look, if Newsweek doesnn't take it, submit it to the Bellevue Literary Review, the Healing Muse, La Chance publishing, and The Sun magazine.
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