How You Can Help Sarah and Others Like Her

June 7, 2013
Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant. Photo courtesy of ABC.com & Murnahan family

Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant.
Photo courtesy of ABC.com & Murnahan family

Over the past week or two, the nation has become enthralled by the story of Sarah Murnaghan, a 10-year-old with end-stage cystic fibrosis. Doctors say that Sarah has only weeks, or possibly days, to live unless she receives a lifesaving lung transplant. The images of Sarah are remarkably gripping as she lies with her friends and parents while on an oxygen machine. Our hearts truly go out to Sarah and her family.

But, the story hasn’t necessarily been centered on Sarah and her wait; rather, news media have focused on the system for organ allocation that is established by the Organ Procurement and Transplantation Network (OPTN). OPTN guidelines for transplantation are extremely intricate and complex, but one area that has drawn particular attention has to do with the age of potential recipients. To make a long explanation short, OPTN guidelines allow Sarah to receive lungs from a child but restrict her ability to receive a transplant from an adult. This drastically decreases the potential for Sarah to receive a lifesaving transplant.

The media coverage and national discussion surrounding the OPTN rules have created a storm of controversy which has prompted a U.S. District Court Judge to order an exception to the current organ allocation rules to allow Sarah to receive adult lungs if an appropriate match becomes available.

The Murnahan family as they wait for a second chance at life for Sarah.

The Murnahan family as they wait for a second chance at life for Sarah.

Unfortunately, a relatively small portion of this discussion has focused on the overwhelming need for Americans to register as lifesaving organ and tissue donors. The fact of the matter is that the supply of transplantable organs is vastly insufficient because not enough people say “Yes” to donation. Right now, there are thousands of families across the United States who are desperately waiting – just like Sarah and her family – for a lifesaving transplant. And, unfortunately, many of these families will needlessly lose their loved ones because they did not receive a donated organ in time. This is a problem that we can – and should –  fix.

So, if you’re outraged that someone like Sarah may not receive a lifesaving transplant, I’d encourage you to look at your license and reflect on whether or not you’re a registered donor. We can’t help kids – or adults – like Sarah unless all of us take the time and effort to make the selfless decision to help others through organ and tissue donation.

Until then, we will continue to read stories about those waiting and see images of kids and adults barely hanging onto life while hoping for a selfless donor.

Read more about Sarah and her wait for a lifesaving transplant at http://bit.ly/11scK3M. Register to be an organ and tissue donor at http://www.GiftofHope.org or http://www.DonateLife.net.

Advertisements

30 Stories in 30 Days: Open-Hearted

April 30, 2013
Melissa and her daughter Chloe

Melissa and her daughter Chloe

“A heart transplant in 2007 brought me from my deepest, sickest day to feeling more alive than ever,” said Melissa Simon.  “This new heart has given me a life I never imagined possible.”

When Melissa was 14, she was diagnosed with viral cardiomyopathy, a condition in which the heart becomes enlarged and weakened.  For about a year Melissa was on bed rest and medications.  In time her condition stabilized.  “I learned to compensate for my decreased heart function and led a relatively normal life for many years,” she said.  She finished her education, got married and started on her career.

When she was 26, an echocardiogram showed that one of Melissa’s heart valves was leaking.  Doctors performed reparative surgery but Melissa’s condition worsened and she suffered from pressure on the heart that prevents it from functioning normally.  “I went downhill fast,” Melissa explained.  “Every day was a struggle.”  Melissa was placed on the heart transplant list on May 20, 2007.

Melissa's donor, Chloe

Melissa’s donor, Chloe

Fourteen-year-old Chloe Coleman died June 5, 2007 and the next day Melissa received her heart.  “I am so grateful to Chloe for giving me her gift that represents the highest level of compassion for others,” Melissa said.  “While her gift is my greatest joy, it’s at the expense of greatest sorrow for Chloe’s family.”

Melissa now has a close relationship with Chloe’s family and when she first did the 95-flight climb up the Hancock Building, Chloe’s parents were at the top to applaud.  Also to honor Chloe, Melissa and her husband Dave named their daughter Chloe after the generous girl whose last act of giving was to donate her organs.

For more about Melissa, visit her website at http://www.MelissaSimon.org.


30 Stories in 30 Days: An Organ Is a Terrible Thing to Waste

April 23, 2013
Pam Carpenter and her husband, Donald.

Pam Carpenter and her husband, Donald.
Photo courtesy of the Chicago Sun-Times – Matt Marton

Pam Carpenter was diagnosed with idiopathic pulmonary fibrosis in 1992. IPF is a debilitating lung disease that causes the air sacs, or alveoli, in the lungs to scar and harden. The cause of this chronic, progressive disease is unknown, and there is no known cure or medication available to improve the condition. The scarring of the lung tissue cannot be reversed, and, as the disease progresses, breathing becomes more and more difficult.

Statistics show that the life expectancy rate after IPF is diagnosed is two to five years. But Pam is quick to tell you she is not a statistic. “I have lived with IPF for 21 years,” she explained. “I am fortunate to have a caring church and a great family support system of sisters, aunts and nieces.”

Pam Carpenter continues to wait for a second chance at life. - Photo courtesy of the Chicago Sun-Time - Matt Marton

Pam Carpenter continues to wait for a second chance at life.
Photo courtesy of the Chicago Sun-Times – Matt Marton

Pam currently is on oxygen 24 hours a day and is waiting for a double-lung transplant. “Each day is a new challenge,” she said. “That is why organ donation is so important to me, my husband, my daughter, my mother and my four grandsons.”

Pam is an Advocates for Hope volunteer with Gift of Hope and is encouraged “because the world of organ donation has evolved, and there are many new lifesaving techniques being explored and used,” she said. “I am also encouraged because people will read these stories and, hopefully, will feel compelled to take action about organ and tissue donation. An organ is a terrible thing to waste.”


30 Stories in 30 Days: Unselfish Gifts for New Lives, New Beginnings

April 20, 2013
Jillian Geuns

Jillian Geuns

Becky Geuns’ daughter, Jillian, was a dancer, owned her own studio and taught and participated in lyrical dance at the churchthey both attended — in spite of her epilepsy. “Jillian loved life,her husband, children, brothers, sister, niece, nephew, friendships and cats, and God,” Becky said.

But in July 2012, Jillian was in a serious automobile accident.“She had a seizure behind the wheel and veered off the roadthrough a field directly into a building,” Becky remembered.“The positives were that she was alone, her car didn’t veer into oncoming traffic and hurt anyone else and she didn’t feel any pain due to the seizure.”

Although first responders and hospital staff worked diligently and compassionately to do all they could to save Jillian, hermultiple injuries were irreversible. “At 10:53 a.m. on July 27, 2012, our beautiful, 23-year-old daughter was pronounced brain-dead,” Becky said. “Jillian had unselfishly signed up to be an organ and tissue donor in case anything ever happened to her, and this is where Gift of Hope took over complete care and responsibility for our daughter.”

Becky recalled that, at the service to celebrate Jillian’s life, thefamily encouraged the 1,200 visitors to register as donors. “As a result, Henry County Illinois has a large percentage of registered donors these days,” she said.

Becky, an Advocates for Hope volunteer for Gift of Hope, said the family is in touch with some of Jillian’s organ recipients today. When they received the first letter, “our lives changed from sad to extremely happy because we knew Jillian was still doing good for others,” Becky said. “We share joy knowing those recipients now survive and hopefully thrive due to Jillian’s unselfish giving.”


30 Stories in 30 Days: A Father/Daughter Donation Journey

April 17, 2013
The Taylor Family

The Taylor Family

“There aren’t many people who can say they grew up knowing they would be an organ donor,” said Quinetta Taylor. “For me, even as a little girl, I knew that, not only was organ donation important, but it was something very special that would mean a lot to someone. At that time, that someone was my father.”

Quinetta’s father was diagnosed with kidney failure before she was born. She grew up watching him go to dialysis three times a week. When she was 16, she saw the toll that long-term dialysis had taken on him and decided to give him one of her kidneys. “When I made this decision, my father was already listed,” she explained. “Before I could give him the gift of life, someone else did.”

Then things changed in Quinetta’s life. While at college she was diagnosed with chronic kidney disease. “I was entering a world I knew plenty about, but this time I was on the receiving end,” she said. “I could no longer help my father because somehow his lifestyle had now become my own.”

In November 2009, her father’s transplanted kidney began to fail, and he returned to dialysis. Two months later, Quinetta joined him. “When transplantation was first introduced to me, I needed to lose a little over 150 pounds,” she said. “After three years of hard work and losing 120 pounds, I was officially listed in March.” Her father is also going through the process of meeting eligibility requirements to being listed.

“That’s why National Donate Life Month is so special to me,” she explained. “Someone has the opportunity to give my father and me the gift of life.”


30 Stories in 30 Days: Giving Second Chances Through the Gift of Life

April 14, 2013
Adam and Jackie

Adam and Jackie

On July 12, 2008, Adam Schatz, Jackie Foucre’s boyfriend of five-and-a-half years, was kart racing at Road America in Wisconsin. Shortly after the last turn, he was in a terrible accident and was ejected from the kart.

Adam was taken to a local hospital and then airlifted to a trauma center nearby. “The outcome of Adam’s accident was not what anyone wanted to hear,” Jackie said. “He had a severe brain stem injury, and there was no hope for recovery.”

imageAdam was in a coma, and after a week his family made the difficult decision to take him off of ventilator support. They knew he wanted to be an organ and tissue donor, so they talked with the donation team about Adam’s wishes. “Their compassion made the processeasier,” Jackie said.

Since the time Adam offered the gift of life through donation, his family has received correspondence from his liver, kidney and pancreas recipients, all of whom have expressed gratitude for receiving the second chance at life that Adam’s decision to be a donor gave them. “Reading these letters gives me a sense of peace,” Jackie said. “One recipient wrote about celebration of a 36th wedding anniversary and a chance to live again because of Adam’s kidney. Knowing that Adam did this – gave people a second chance at life – is a true blessing.”

Jackie said that organizations like Gift of Hope Organ & Tissue Donor Network are here to help give people that second chance. “Although I lost my best friend, I know he is proud knowing I’m doing all I can to encourage people to become donors so that they can also give someone else a second chance at life,” Jackie said.


30 Stories in 30 Days: The Prangl Family

April 6, 2013
The Prangl Family

Julie Prangl and her family

When Julie Prangl took her son, Nick, for his driver’s license, they saw a sign for organ and tissue donation. It read: “I AM. ARE YOU?” Nick joked about recycling everything and signed up. This was important because Nick’s sister, Lindsey, was wait-listed for an ankle transplant.

The family’s concern was always about Lindsey as a recipient. But the spotlight shifted to 17-year-old Nick when, in 2007, an automobile accident left him brain-dead. Julie remembered that Nick always wanted to make a difference. But she never imagined it would be like this.

Nick Prangl

Nick Poto

“I was praying for a donor for Lindsey,” Julie explained. “And then they were checking Nick’s ankle as a match.” It wasn’t, but it was a match for a college basketball player. Nick’s heart went to a father of four, his liver saved a nine-year-old girl’s life, one kidney went to a 24-year-old woman, and the other kidney helped a 15-year-old girl.

Later that year, Julie learned they had a match for Lindsey. “We were hopeful that there would be an end to her pain,” Julie said, “but our hearts were breaking for the donor family because we knew what they were going through.” Although the transplant procedure for Lindsey failed, she had a second, successful transplant later. Now she has a full-time job, minimal pain and walks without crutches.

As an Advocates for Hope volunteer for Gift of Hope, Julie shares stories of Nick and Lindsey. “I have experienced the heartbreak, loss, hope and awe that come from being on both sides of donation,” she explained. “I realize it’s not just a gift to the recipient and their loved ones, but also to the loved ones like us, left behind, choosing to say, ‘I am. Are you?’”


%d bloggers like this: