Elk County and Penn Highlands youth encourage organ donation | News
DUBOIS — Toryn Zuchowski seems like your normal 10-year-old boy. He enjoys playing with his friends and his twin sisters, Gwen and Morgan. He enjoys watching football and going to school. But Toryn is not your typical boy. He suffers from a rare condition called biliary atresia, which occurs when the bile ducts inside or outside the liver do not develop normally.
Toryn is one of the few children born in Pennsylvania to have this liver abnormality. He was diagnosed shortly after birth in June 2011 as stage 2, out of three stages. In stage 2, the underdeveloped ducts were not properly drained, which can lead to liver damage and cirrhosis of the liver, and can be fatal if left untreated.
Toryn was enrolled in a study at UPMC Children’s Hospital in Pittsburgh; and, at the age of eight weeks, the Kasia procedure was performed there. The Kasia procedure, which is usually the first treatment for biliary atresia, connects the liver to the small intestine, bypassing the abnormal ducts. During the operation, Toryn’s blocked bile ducts and gallbladder were removed and replaced with a segment of his small intestine.
The segment of his intestine was sewn to the liver and it now functions as a new extrahepatic bile duct system. Although the Kasia procedure does not cure biliary atresia, it can slow liver damage and delay or prevent complications and the need for a liver transplant.
Over the past decade, however, he has had multiple liver infections and suffers from cirrhosis of the liver. The disease caused massive bleeding in his stomach from the esophageal varices he developed, which resulted in extensive blood transfusions.
This spring, he is due to undergo the TIPS procedure which involves the insertion of a stent to help stop future bleeding and fluid buildup and relieve pressure from blood flowing through the diseased liver.
“Toryn doesn’t know what it’s like to feel good – it’s the only life he knows,” his mother, Melissa Zuchowski, who is a licensed practical nurse at Penn Highlands Orthopedics and Sports Medicine, told St. Marys. “He often tells us he hates being a ‘sick kid’ so his dad and I tell him ‘see what a huge impact you can have’.”
Toryn hopes the story of her ongoing journey will inspire others to become organ donors. Melissa Zuchowski feels fortunate to be employed by a health system – Penn Highlands Healthcare – which advocates organ, tissue and cornea donation.
More than 100,000 people across the country are waiting for life-saving transplants. Unfortunately, many people never have the chance to match with a suitable donor. Not everyone who registers as a donor can make a donation. In fact, only three out of 1,000 recently deceased people are eligible to make a viable donation. This nationwide shortage, combined with a long waiting list, results in many people dying while waiting for an organ donation. But you can make a difference by becoming an organ donor.
About 11,000 people die every year when they are considered medically fit to donate organs, tissues and corneas, but only a fraction donate. Anyone can be a potential donor, regardless of age, race or medical history.
The Center for Organ Recovery & Education (CORE) is one of 57 federally designated nonprofit organ procurement organizations in the United States. CORE partners with more than 150 hospitals and healthcare facilities to offer the gift of life by coordinating the surgical retrieval of organs, tissues and corneas for transplantation. CORE also facilitates computerized matching of donated organs, tissues and corneas. To become a donor, visit www.core.org/register. After registering, you should inform your family about your decision so that when the time comes they will not be surprised and can help you fulfill your wishes.
Because there is a shortage of organs and patients waiting for a liver may die or become too ill to undergo a transplant, living donor liver transplantation is an important option for many people on the list. waiting. Finding a living donor from a healthy adult (relative, friend, or altruistic donor) shortens the waiting time, increases long-term transplant success, and frees up a liver for a patient on the waiting list who has no this option.
In living donor liver transplantation, a portion of a donor’s healthy liver is transplanted into a recipient in need. Living donor liver transplantation is possible because the liver, unlike any other organ in the body, has the ability to regenerate (regrow). Most regeneration of donor and recipient livers occurs within the first eight weeks. For more information on liver disease, living donation and organ transplantation, visit the United Network for Organ Sharing at www.unos.org.