After Surgery Updated: Jun 01, 2008 - 01:32:24 am CDT
Some patients require multiple transplant proceduresBy Carrie Frillman - cfrillman@daily-chronicle.com
From organ failure and dialysis to being placed on a transplant waiting list, the journey for organ recipients can be long and complicated.
But having a transplant is often just the beginning. For some, it's just the first of what may become repeated transplants.
From Jan. 1, 1988, to Feb. 29, 2008, there have been 426,338 organ transplants performed in the U.S., said Mandy Claggett, spokeswoman for the United Network for Organ Sharing. Of those transplants, 380,575 were primary and 45,763, or 12 percent, were repeated.
The following are stories of three local organ recipients' sometimes-discouraging, always emotional, experiences with transplant surgeries.
In Repair
SOMONAUK - For three years, it was smooth sailing.
Richard Kossak Jr., 20, of Somonauk received a heart transplant during his junior year of high school after a strep infection shut down most of his organs. He was the 2006 valedictorian at Somonauk High School and has been studying to be an animator at DePaul University.
But in April, an annual biopsy showed signs his body was rejecting the heart he received in 2005. He was immediately admitted to the intensive care unit at Children's Memorial Hospital in Chicago, where doctors are trying to repair his heart through medication and dialysis.
“Rejection can happen at any time,” said his mother, Cheri Kossak. “A week later, a month later or 10 years later.”
But he's not on the waiting list for a new organ yet: His parents received news last week that the strength of his heart was improving.
The list - it's a seemingly vague term the Kossaks refer to as “the waiting game.” Because of his status as a minor and his serious condition, Kossak Jr. was luckily near the top while in high school.
He received a new kidney April 26, 2005. Upon returning home following a 79-day stay at Children's Memorial, Richard took up to 72 pills a day, which included anti-rejection medication - a lifelong commitment for a recipient to allow the body's acceptance of a foreign organ. At his best, he took just 21 pills a day.
Quiet and strong, his parents described Richard as a young man who doesn't understand why he gets so much attention.
“We always say he's our hero because he deals with this much better than we do,” his mother said. “Every day, we live on the edge of not knowing and he's like, ‘Why are you worried?' But our moods depend on how he feels.”
The Kossaks began attending a support group called ParentWISE for parents who have children who are ill.
“It's nice to get a parent's perspective versus a doctor's perspective,” Richard Kossak Sr. said. “Anyone who has ever been a parent of a sick child knows you don't anticipate anything.”
Waiting Game
DeKALB - Paul Rygh's cell phone is always on.
His family doesn't want to miss a call from Northwestern Memorial Hospital - a call that could be bringing the news that a kidney is available for transplant.
The 47-year-old Sycamore resident underwent transplant surgery eight years ago after his kidney failed from a long-standing kidney disease. He remained on the transplant waiting list for about a year before his wife, Patti, proved to be a match.
In 2006, a visit to the doctor revealed Rygh's body was in chronic rejection of his wife's kidney. Today, he is back on the list, and doctors told him to anticipate a three- to five-year wait.
“I'm anxious every day,” the former Aurora cop said Wednesday. “One day, I realized I had a missed call from (the hospital). I got so excited I was shaking. When I called back, I found out they just needed some paperwork.”
Until a suitable replacement for his kidney is found, Rygh's survival hinges on getting dialysis three times a week. The cleansing process filters and replaces toxic fluids in the body and takes about four hours to complete.
Rygh sat on a bench Wednesday afternoon under a sunny sky as he reflected on his transplant journey. His arm - wrapped with white gauze from tubes that were inserted during that day's dialysis - rested on a nearby table
“No pun intended, but I'm drained,” Rygh said. “I've noticed the more I do it, the faster I bounce back after the treatment.”
Kidneys and the heart work hand-in-hand and Rygh's organ rejection has caused his heart to fail four times, he said, adding that a new kidney would cure both problems. In the meantime, the friendly, soft-spoken Rygh is living life to the fullest and soaking up time with family, he said.
“I try not to get my hopes up, but I always do,” he said. “When you get let down, it feels like you get hit right in the gut.”
The birth of Rygh's granddaughter in April 2006 helped put life back into perspective, he said.
“I'm glad I've stuck around,” Rygh said smiling.
The Third Time is the Charm
DeKALB - Living day-to-day is a full-time job for Jason Carlson.
And it's one he is thankful to be working.
“You deal with the hand you've been dealt,” the 39-year-old Carlson said. “I always tell people, ‘You spend more time not existing than you do existing. Make the most of it.'”
Carlson is a lifelong DeKalb resident and Chicago Bears “super fan” most know as “Bear Down J.” Diagnosed with juvenile diabetes at age 7, he has undergone three kidney transplants and became legally blind in 1991 after kidney failure caused his blood pressure to skyrocket, making his eyes bleed.
“I lost my sight in like, a day,” he said. “My eyes kind of turned into little lava lamps.”
No stranger to being on the organ recipient waiting list, Carlson does everything he can to preserve the health of his latest kidney, which was transplanted in February 2005.
He takes nearly 40 pills daily to prevent rejection and pricks his finger about 20 times a day to monitor blood glucose levels. He also self-administers about 10 insulin injections.
His responsibilities are evidence that a transplant doesn't end with replacing an organ, Carlson said. Maintaining daily health requires a recipient to be acutely aware of his or her body, he added, and what goes into it.
“I can't see but I can tell what medicine I'm holding just by shaking the bottle and hearing the way the pills rattle,” he said. “You have to keep track of what you're taking otherwise you're going to waste someone who is a hero for giving you this chance.”
Inducted into the Pro Football Hall of Fame Hall of Fans in 2004, Carlson uses his status to get the word out about organ donation. He visits local classrooms to help children gain perspective and encourages others to persevere and tap into their passions to help them do so.
“For my friends, my dog and my family, I will fight until I'm just a nub,” he said. “I will fight until I just fall apart.”
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