“He Will Always Be a Hero”

April 8, 2014
Lucy and her sisters

Lucie and her sisters

A friend once asked Lucie Gleason, “Is your hair naturally curly?” Her joking reply? “No, I had a really bad perm once.”

If the explanation were only that simple.

At age five, Lucie was a healthy, gregarious child with thick, straight hair. Like any child, she had her whole life ahead of her. Today, she is a healthy, gregarious teenager with curly hair. And her whole life remains ahead of her — thanks to a liver transplant.

Lucie prior to her transplant

Lucie prior to her transplant

Just before starting kindergarten, Lucie fell ill with a high fever that wouldn’t subside. After her stomach began to hurt, her doctors ordered a CAT scan. The results showed a rare and rapidly growing tumor in her liver. Lucie began intense chemotherapy to treat the cancer. As her hair fell out and her small body weakened, the tumor — the size of a small Nerf football — grew rapidly out of control. Her last and best hope was a liver transplant.

“We prayed so hard for a miracle,” says Lucie’s mother, Leah.

In July 2003, that miracle arrived: A donated liver for Lucie became available. Her cancerous liver was removed, and surgeons transplanted part of a liver donated by a man who had registered to become an organ donor upon his death. The larger part of his liver — the only human organ that can regenerate — was transplanted into a woman who had been on the transplant waiting list for some time, the Gleasons later learned. His generosity save two people’s lives.

Lucie today

Lucie today

After her transplant, Lucie returned to health. Her once-straight hair started to grow back curly, and she was strong enough to join her kindergarten class that fall.

Four years after her liver transplant, doctors told the Gleasons that Lucie was cancer-free. Today, 10 years after her transplant, she remains robustly healthy. A high school honor student who enjoys lacrosse, cake decorating and face painting, Lucie also volunteers for and promotes causes related to cancer awareness, liver disease and organ donation.

“Because of the transplant, Lucie can look forward to a long life,” says Leah, an Advocates of Hope volunteer with Gift of Hope.

Lucie recently received her driver’s permit and fully understands the significance of joining the state organ and tissue donor registry, which people can do when obtaining their driver’s licenses. “I cannot thank my donor and his family enough for giving me a second chance at life,” she says. “I think about him all the time and the unselfish step he took to register as a donor. He will always be a hero to me.”

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Master of the Second Act

April 4, 2014

Brian Brandt knows a thing or two about reinventing oneself. After a successful career in marketing and advertising that included stops at Marshall Field’s, Rust-Oleum Corporation and legendary Chicago ad agency Leo Burnett, he left the business world in 1993 to become a vocational teacher in the Chicago Public Schools system.

“Everybody in my family was very supportive,” Brian says, “and, fortunately, I could afford the career move. But I saw the good, the bad and the ugly — often in the same day.”

Brian prior to transplant.

Brian prior to transplant.

Perhaps nothing was uglier than another life-changing decision he made eight years ago, though, when his family doctor determined he was suffering from ascites (eh-SITE-ees), a condition where fluid accumulates in the abdominal cavity because the liver is malfunctioning. “He suggested having my esophagus scoped to see if pressure was building in my veins,” Brian recalls. “I just thought I was getting fat or something. I ignored his advice, and life went on.”

Sort of. Until the day he passed out at home. “A vein ruptured in my esophagus,” Brian explains. “I could have bled to death, but my daughter called the paramedics, and doctors were able to seal off the vein below the rupture.”

That time, Brian got the message: He had a severe liver problem.

As his ascites worsened and his liver continued deteriorating, Brian was having six to eight liters of fluid removed from his midsection twice a week. “I couldn’t bend over to tie my shoes,” he says.

Then fate intervened.

In early 2011, a friend from Brian’s church visited him at home, observed his condition and put him in touch with an acquaintance connected with the University of Wisconsin Hospital and Clinics in Madison. The acquaintance invited Brian to meet the members of the UW transplant team. “I’ll never forget the words they said: ‘You are now part of our family.’”

The Brandt family after Brian's transplant.

The Brandt family after Brian’s transplant.

Brian was added to the transplant waiting list in late spring 2011 and, after what he describes as a “dreadful” summer physically, in August he received another opportunity for a major life change — a matching liver was found.

“My transplant took place on August 12, 2011,” says Brian, now retired and an enthusiastic advocate for organ donation. “Aside from my birthday, it’s the most important day of my life.

After his transplant, Brian considered himself to be the luckiest guy in the world. “Today I say, ‘Well, I may not be the luckiest guy, but I still feel like I’m nationally ranked!’”


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.


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: A Second Life

April 24, 2013

Norvelle Smith’s story started more than 15 years ago when, at the age of 24, he had two minor heart attacks and two strokes in one week. “I never had any health problems,” he explained. “I was very active as a child, playing football and basketball and even doing some weight lifting.”

Norvelle maintained a very active lifestyle well into his 20s. “I never used any type of drugs or drank much alcohol,” he said. “But I suppose medical conditions don’t always happen because of the life you live.”

After his health issues arose, Norvelle learned that his heart was functioning at only 33 percent of capacity and was enlarged. “I also learned that the strokes and heart attacks were caused by blood clots in my heart chambers,” he explained. “I lived day to day, taking many medications to control high blood pressure and congestive heart failure.”

LVAD2

Norvelle is alive today because an LVAD was able to sustain him until he received a lifesaving heart transplant.

This continued until Norvelle was 35 when his condition deteriorated further. He was admitted to the hospital where he received an LAVD (left ventricular assist device), which acts like a mechanical heart that takes over for a weakened or nonfunctioning heart and pumps oxygen-rich blood throughout the body. Norvelle was hospitalized this way for four months before he received a successful heart transplant. “I have been living for the past four-and-a-half years with my new heart and doing very well,” he said.

Like so many organ and tissue recipients, Norvelle said he received a “second life” due to the generosity of a donor. In many cases, donation also benefits families of donors and helps them manage their grief by knowing that someone lives because of their loved one’s selfless act.


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: Our Miracle Child Saved Lives

April 22, 2013
Jonathan and Cindy Cook

Jonathan and Cindy Cook

When she was pregnant with her first baby, Cindy Cook was ecstatic, until an abnormality was detected.  “We learned that our son had a rare genetic disorder called Trisomy 13,” she said, “and the doctors said it was ‘incompatible with life.’”

Jonathan continued to surprise with each year of his life.

Jonathan continued to surprise with each year of his life.

Their son, Jonathan was born on April 3, 1996 and from the start he was a fighter.  When Jonathan was five he stopped breathing and lost too much oxygen to his brain to sustain breathing on his own.  “We were prepared to say goodbye,” Cindy explained.  “But in true Jonathan fashion, he had other plans and began breathing again.”

When Jonathan was seven, Cindy had twin boys, Jacob and Evan, and when he was 10 Nathan was born.  But only six months later, Jonathan stopped breathing again.  “This time, because of what he suffered when he was five, his brain could not withstand the trauma,” Cindy said.  The doctors detected no brain activity.  “But Jonathan was still surprising us,” Cindy recalled.  “We were told he could be an organ and tissue donor.”

The Cook Family

The Cook Family

Cindy shares how Jonathan was treated with such respect and tenderness.  “The Gift of Hope coordinator wanted to know everything about Jonathan and we were so proud to tell her about our miracle son,’” Cindy said.

Jonathan was able to be a tissue donor.  He donated his heart valves, bone and some skin.  “We recently learned that his heart valves were given to an eight-year-old girl and this brings us great joy,” Cindy shared.  “What an ironic twist!  This boy, whose condition was ‘incompatible with life,’ went on to save a life!”


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