Because Democracy Lives, So Does Charles

April 14, 2014

Charles Kittles with Gift of Hope CEO Kevin Cmunt receiving a Lifesaving Partners award.

Charles Kittles with Gift of Hope CEO Kevin Cmunt receiving a Lifesaving Partners award.

Gift of Hope Advocates for Hope volunteer Charles Kittles might consider donating his body — minus its viable organs and tissue, of course — to medical science someday. That’s because this 73-year-old retiree, who was released from Loyola University Medical Center with his life-renewing kidney transplant on New Year’s Day 2006, is nothing short of a scientific miracle.

On top of the diabetes and high blood pressure Charles believes caused his kidneys to fail, from 2000 through 2005 he underwent neck surgery, received treatment for prostate cancer, had a cancerous kidney removed, had a three-month nursing home stay and suffered an infection that necessitated the removal of his colon. Yet Charles, a member of Gift of Hope’s African-American Task Force, remains remarkably upbeat and enthusiastic while spreading the good news of organ and tissue donation.

“My doctor used to tell me, ‘You don’t understand that you’re sick,’” Charles recalls. “Well, I never considered myself as sick through any of this. I was just in the shape I was in. You know, we all deal with things in different ways.”

His four children were tested as potential kidney donors. A long-distance blood sample revealed that his daughter, Peggy Jacobs, who­ lives in California, was an ideal match. “There was no discussion,” Charles says, laughing. “This all took place during the time my colon was being removed, and I was in a coma in the hospital. I knew nothing about any of this.”

Charles was concerned about his daughter. “But she told me, ‘You remember when we used to talk around the dinner table, and you always stressed that we live in a democracy and the majority rules? Well, we outvoted you! You have to accept this!’ The best part was that we were in the same room together at Loyola.”

Charles became involved with Gift of Hope after speaking at Loyola’s annual candlelight ceremony in 2006. “Prior to my transplant, I had no idea this world existed,” he says. “Volunteering has given me the opportunity to meet so many truly caring and dedicated people.” While he says he rarely tells his own story anymore — “Truth be told, it gets boring after a while.” — he shares an important message of prevention.

“When you’re told something is wrong with you and your doctor gives you a plan, follow the plan, period,” says Charles. “Don’t groan and moan about it. If you’re told, ‘You can do this, but you can’t do that,’ then don’t do that.”


Donor Chain Creates Links to Life

April 2, 2014

 

Kasci saved Camille's life by anonymously donating her kidney.

Kasci saved Camille’s life by altruistically donating her kidney.

“To watch Camille run around like a perfectly healthy five-year-old was an experience I’ll never forget,” says Kasci Bedessem. “Knowing she can do that because of me is an incredible feeling.”

Kasci decided to participate in a donor chain in April 2011, but she didn’t realize the sense of urgency for a special little girl who had lost most of her kidney function in 2009.

“I had never met Camille,” Kasci says. “I knew nothing about her, not even her name, when I chose to donate. All I knew was that I had two healthy kidneys and could live with just one. I could give the other one to someone who needed it. I could save a life.”

Camille was born prematurely, about 17 weeks early, in October 2007. She spent five months in the pediatric ICU before being allowed to go home. Her kidney function was at 25 percent, and she needed to receive oxygen from that point on.

By her second birthday, Camille’s body had outgrown her kidney’s ability to adequately perform. Her kidney function had fallen to 15 percent, and her doctors put her on the kidney transplant waiting list.

Camille’s father tried to qualify as a donor, but he was rejected. Her mother also underwent the rigorous testing process and was deemed a suitable donor. But she was incompatible with Camille.

Although Camille’s mother was not a match for her daughter, she was potentially compatible with another person waiting for a lifesaving kidney transplant. That meant she could be part of a kidney donor chain where her kidney would be given to someone in need and, in return, Camille would get a kidney that matched her needs

Camille and her mom were listed on the National Kidney Registry, which looks at information nationwide to match donors and recipients, in July 2010. In April 2011, a matching donor for Camille was found, meeting a host of requirements, and a chain of nine donors and nine recipients was painstakingly organized. But Camille caught a cold, and the surgeries were postponed.

A week later, eight of the nine surgeries were scheduled. The lone exception was Camille’s. Her surgery eventually was scheduled in June 2011. The donor for the three-year-old? Kasci Bedessem, an altruistic living donor.

Kasci after her kidney donation.

Kasci after her kidney donation.

Kasci was thrilled to meet Camille and her family in summer 2013 and see her full of life and ready to start kindergarten in the fall as a normal, happy, healthy girl. “It’s very likely that Camille never would have gotten her kidney if I hadn’t decided to be a living donor,” Kasci says. “I saved her life, and I indirectly saved the lives of the eight other transplant recipients in the donor chain. I am proud and privileged to be someone’s hero.”

Other people can be heroes, too, as registered organ and tissue donors.


Record-Breaking 2013: Thank You, Thank You, Thank You

February 5, 2014

Thank you.

Thank you to our donor families. Thank you to our volunteers. Thank you to our partner hospitals. Thank you to everyone who helped make organ and tissue donation possible in 2013.

Last year, was a busy year for Gift of Hope. We worked with thousands of families across Illinois and northwest Indiana to coordinate their loved ones’ donations. These families are, without a doubt, the embodiment of Gift of Hope and our mission.

In 2013, we were able to help save nearly 1,000 lives through organ donation and impact countless lives through donated tissue. These are both all-time highs for Gift of Hope.

But, none of this would be possible without the selfless gifts of more than 1,500 families that said “Yes” to organ and tissue. We cannot say “thank you” enough times to those who gracefully gave life to others in their moments of deep sadness.

Thank you infinitely.


Kelvin’s Big, Loving Heart

January 27, 2014

Kelvin Martin is many things. He’s a deejay (DJ Flash … watch out for him), a father, a husband and a heart transplant recipient.

Last summer, Kelvin burst through the front doors of Gift of Hope for his first Advocates for Hope training. Since then, he’s inspired the Gift of Hope team with his boisterous, loving personality. He has reminded us of why our work is so vital to countless people across Illinois and Indiana.

On January 27th, Kelvin walked out of Rush University Medical Center as a new man with a new lease on life. We thank the selfless donor that allowed Kelvin to keep his beat going.

You can make a difference for others, like Kelvin, by registering as an organ and tissue donor at http://www.GiftofHope.org!


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: A Mother’s Day Miracle

April 26, 2013
Jose feels blessed to receive a lifesaving gift!

José feels blessed to have received a lifesaving gift.

“I am one of the lucky ones,” said José Betancourt, a liver and kidney transplant recipient. “I needed a miracle, and I was blessed with a new life.”

José was diagnosed with chronic liver failure in January 2011. His health started deteriorating at lightning-fast speed, and in March he was admitted to Northwestern Memorial Hospital’s Organ Transplant Unit, where he remained for several months. On April 12, he was placed on the organ transplant waiting list.

“My liver was giving out, and it began affecting other organs,” he explained. José’s kidneys began to fail, and he went on dialysis. “Each day, I grew weaker, but I refused to lose hope,” he said. “But instead of just needing a liver, I now needed a liver and a kidney.”

José was released from the hospital in May 2011 because caregivers could do nothing more for him until they received the call that transplantable organs were available. He was given about three weeks to live.

Jose commits his time to sharing his story and building donation awareness

José commits his time to sharing his story and building donation awareness

José’s homecoming was bittersweet. “I could go home and spend Mother’s Day with my family, but it was frightening because I was waiting for a call that may not come in time,” he said. José’s wife wished for a special Mother’s Day gift — the call from the hospital. It came a day after Mother’s Day at 1:30 a.m. “It was a miracle,” José said. “And I was blessed to receive my kidney and liver from the same donor. This was the beginning of my new life.”

José is now an Advocates for Hope volunteer with Gift of Hope, focusing his efforts on educating and informing the Latino community about offering the gift of life to others through organ and tissue donation. “The least I could do after God gave me a second chance is to help others,” he said.


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.”


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