Donation Offers Breath of Life

April 5, 2014
Jason wasn't supposed to see his first birthday. Here he is celebrating his 30th.

Jason wasn’t supposed to see his first birthday. Here he is celebrating his 30th.

Diagnosed at birth with cystic fibrosis — a disease that critically affects the lungs — Jason Wiltfang was expected to live two weeks. He is 33 today, thanks to organ donation.

Jason beat the early odds to live a relatively normal childhood, taking part in active sports like baseball and wrestling. But as he reached his mid-20s, his health declined, and he was placed on the lung transplant waiting list. In November 2011, his family received the call that a possible donor was available. At the hospital “the doctor came in to tell us that the lungs were a match,” recalls his sister, Kristina.

After the transplant, Jason was able to go bowling again, attend family get-togethers and go places with friends. “We were overjoyed but devastated for the family of the donor because that could have been us — we could have lost someone we love,” Kristina says.

Jason and his family as the prep for his lung transplant.

Jason and his family as the prep for his lung transplant.

In July 2013, Jason again was rushed to the hospital. His transplanted lungs had given him all the new life they could, and he needed another transplant. “We hoped and prayed every night for a new donor match for Jason,” Kristina says. “At the same time we felt bad for the loss that had to come.”

Months passed, and Jason’s body started to give up. Even worse, he began to lose hope. “My husband and I went to visit him,” Kristina says. “As I was leaving, I thought that was it. I thought I was saying goodbye to my best friend for good.”

Two days later, the family was called to the hospital. A lung donor had been found. “The best part of the day was seeing the huge smile on Jason’s face and his will to fight restored,” Kristina says.

Jason shortly after his transplant.

Jason shortly after his transplant.

Jason received his transplant and today is recovering and beating all odds against him, his sister says. “Imagine lying in that hospital bed, day in and day out, waiting to take your last breath. Now imagine being able to get out of it after seven months. Because of organ donation, my hero will be able to do that soon.”

Organ donation is a true gift of life and a large benefactor in Jason’s life, Kristina says. “That is why I’m an Advocates for Hope volunteer for Gift of Hope, and I hope to have my brother get involved with me as soon as he is able.”

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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: 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: Answered Prayers

April 16, 2013
The D'Agostino Family

The D’Agostino Family

The prayers of an entire community were answered on October 24, 2011, when Julie D’Agostino had her successful double-lung transplant surgery. On the one-year anniversary, family and friends gathered for a special rosary of thanksgiving at Visitation Church in Elmhurst, Ill., where hundreds of the faithful had gathered to pray for Julie many times during her life-threatening ordeal with cystic fibrosis, a progressive disease that clogs the lungs with mucus, makes it difficult to breath and causes lung infections.

Julie is alive today because a selfless donor said "Yes" to donation.

Julie is alive today because a selfless donor said “Yes” to donation.

“My daughter was prayed to good health,” said Mary D’Agostino. “She didn’t have a lot of life left in her. Those lungs were brought to her by prayer.” Julie had been on the transplant waiting list for two years. When her health took a dire turn, a donor came to her rescue. “We were celebrating, but another family had lost their loved one,” Mary said.

The D’Agostino family knows nothing about the donor who changed Julie’s life, but Julie and her family are so grateful that they have chosen to give back by advocating for organ and tissue donation. Today, they are all Advocates for Hope volunteers with Gift of Hope.

In addition to the family’s efforts to make people aware of the opportunities for organ and tissue donation, Julie’s neighbor, Giancarlo Iannotta, has made a movie, “Miracle on South Street: The Julie D Story.” His project began when he filmed Julie’s homecoming after her transplant surgery. He posted the two-minute segment on Facebook and was amazed at the interest.

This inspired him to tell Julie’s story by creating a 40-minute documentary that has been broadcast on WTTW Channel 11 in Chicago and on Comcast On Demand. It also has been featured at the York Theatre in Elmhurst and is now available on DVD.

<p><a href=”http://vimeo.com/32631619″>MIRACLE ON SOUTH STREET: The Julie D Story (Trailer)</a> from <a href=”http://vimeo.com/giannotta”>Giancarlo Iannotta</a> on <a href=”http://vimeo.com”>Vimeo</a&gt;.</p>


30 Stories in 30 Days: Valerie’s Re-Birthday

April 4, 2013
Valerie struggled to breathe while waiting for a lifesaving double-lung transplant.

Valerie struggled to breathe while waiting for a lifesaving double-lung transplant.

“I celebrated my 15th re-birthday March 3rd after receiving a double-lung transplant,” said Valerie Batz. “Now, I can breathe!”

Valerie was born with cystic fibrosis, a progressive disease that scarred her lung tissue and clogged her airways until she had very little air space left. She struggled with the disease for 38 years before she went on the transplant waiting list at Loyola University Medical Center. “For all of those years, I had strong support from my parents and husband,” she said. “And I fought to live for my nine-year-old twins.”

Valerie with her twins on graduation day.

Valerie with her twins on graduation day.

 But Valerie’s condition deteriorated until her doctors said she had less than 24 hours to live. She wanted to go home to say good-bye, but she asked them to hold her room because “I didn’t want to die at home and have my children experience my death,” she explained. “That was the hardest conversation, telling my children how much I love them and that mommy’s going to heaven. I couldn’t cry because it would stop my breathing.”

Then the call came, and she was rushed back for surgery. “When I woke up, I could breathe!” she exclaimed. Valerie’s first question was about her donor. “I thank her for every breath I take,” she said. “She has allowed me to watch my children grow up. I hope my donor is proud of how I’ve taken care of our lungs and how I’ve given back by raising funds for CF and speaking on organ donation. I’m blessed and grateful, and I believe in miracles because I am one.”

Valerie can now live her life without worry... Thanks to a selfless donor.

Valerie can now live her life without worry… Thanks to a selfless donor.


How the Affordable Care Act Could Affect Organ Transplantation

June 28, 2012

The hottest topic of the day is undoubtedly the United States Supreme Court’s ruling that upholds the Affordable Care Act. The Affordable Care Act has major implications for almost all areas of healthcare and medicine. As you would expect, it will likely have an impact on organ transplantation.

We believe that the Affordable Care Act could give hope to individuals in need of lifesaving organ transplants. Currently, there is a small pool of Americans who struggle get placed on the national transplant waiting list because they lack insurance and are unable to afford post-transplant medications that are vital to the long-term health of the transplanted organ and the individual. Right now, states pay for transplants for uninsured patients through Medicaid. But, a patient’s inability to pay for post-transplant medications can lead to delayed placement (or denial of placement) on the national transplant waiting list.

The Affordable Care Act could bridge the gap that these patients face in funding post-transplant medications by providing affordable health insurance. The act could lead to these patients being added, in a more timely fashion, to the national transplant waiting list.

What do you think? We want to hear your opinions on the Affordable Care Act and how it could affect organ transplantation. Let us know by leaving a comment or posting on the Gift of Hope Organ & Tissue Donor Network Facebook page.


Liver Life Walk 2010: Guest Post

August 3, 2010

On Sat. July 17th Donate Life Illinois participated in the American Liver Foundation‘s Liver Life Walk which took place at the Naperville Riverwalk.  A very warm sunny day indeed.

Approx 100 walkers congregated, shared stories and trekked along the beautiful Naperville Riverwalk to increase awareness of the need for liver and other organ donations.

Morgan D’ Organ was there and lead the procession.

Here’s a photo of me and my wife, Pam, with Morgan at the DLI booth. I received two new lungs in June 2006.  Pam and I are thankful to my donor family and the support that we’ve received from friends, family and church to help us realize the blessing that organ donation provides.

-Randy Zwier, Naperville

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