A Choice of Love

April 26, 2014
Sonia and Ulises

Sonia and Ulises

In December 2012, Sonia Lara’s husband, Ulises, was diagnosed with kidney failure. The couple soon learned he was born with one kidney. And because it was failing, he needed a kidney transplant.

“My husband was 39 when he found out,” Sonia says. “Having grown up in Mexico City, without means, medical exams and medical testing that is more accessible here in the United States, he never had a chance to take care of the one kidney he had.”

When her husband was evaluated for possible transplant, Sonia was evaluated for potential compatibility as his living kidney donor. “I thought about my sons who were eight and six, one of whom has cerebral palsy,” she says. “This was a choice of love. This was a choice to give my sons a future with their father, who already had given them so much.”

A week later —“against all odds,” Sonia says — she learned she was a compatible donor for her husband. The next three months were a series of exams leading up to her kidney donation and her husband’s transplant.

“It came time to talk to our family about the situation,” Sonia says. “My mom couldn’t quite comprehend the process and the risks. I ended up taking her to our family physician of 30 years, who had diagnosed Ulises’ need for a transplant so he could explain to her that this was quite okay and that living donors’ risks are minimal.

“Miracles of miracles,” Sonia’s mother was okay with the surgery. “She was there throughout the surgery, she was there after it and she has been influential in my healing.”

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Ulises was transplanted with Sonia’s donated kidney, and both are healthy today. Sonia says her mother talks about how her daughter saved a life. “She is proud to talk about it and relishes that she, too, is signed up to be an organ donor,” Sonia says. “I know we were lucky with our experience. There are so many others who aren’t as lucky.

According to the National Kidney Foundation, more than 120,000 people are waiting for a lifesaving organ transplant in the United States. Of them, about 99,000 are waiting for kidneys.

“If I can urge you to do something today, it’s to make a difference in someone’s life,” Sonia says. “Sign up to be an organ and tissue donor. Thousands and thousands of people are depending on it. Give someone else a chance at life.”


Peace and Purpose at Life’s End

April 25, 2014
Michelle and Brian

Michelle and Brian

Michelle Bernstein says that organ donation was of utmost importance to her brother, Brian, and, now, to her family as well. “For Brian, donating his organs helped to bring him peace and purpose at the end of his life,” she explains. This is Brian’s story as told by Michelle:

Brian had a tragic car accident in summer 2009, just weeks before his 18th birthday. The accident left him with a rare condition called “locked-in syndrome.” He was completely and permanently paralyzed from the neck down. He could not breathe, speak or swallow and depended on a ventilator and feeding tube to sustain him. Although paralyzed, he still suffered from constant pain. Yet, his cognitive abilities were fully intact. After much practice and patience, he learned to communicate by blinking his eyes and, later, mouthing words. Using these communication techniques, Brian conveyed his wishes to become an organ and tissue donor.

Brian was a fighter and persevered for nine months. However, realizing his situation would never change, Brian courageously decided that the time had come to be removed from life support in a way that his organs could be recovered for transplantation. Generously giving life to others was the one goal he could still achieve.

During his last days of life, Brian got two tattoos. He had the St. Michael the Archangel tattooed on his chest because he wished to be an archangel to those that he would be leaving behind. He also had the Donate Life logo tattooed on his right hand so that everyone paying final respects would see his silent message.

The night before Brian’s death, he consoled our mother saying, “Don’t cry, Mom. This is a good thing. I know what it’s like to suffer and lose hope. But tomorrow someone else will be getting good news.” Then in the hospital, when the organ compatibility tests were done and Brian learned who some of his likely recipients might be, he was pleased, but he responded, “I wish I could help them all.” That couldn’t be done, of course, but he saved and improved several lives by donating his organs and corneas.

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In the end, Brian found a higher purpose that he expressed by giving life to strangers and inspiring those around him, while freeing himself from the torment of being trapped inside his own body. Our hearts are broken, and our lives are forever changed, but we will carry his mission forward and encourage those of you reading Brian’s story to do the same.


Gift of Life Unites Rivals

April 24, 2014
The Ehrenberg family

The Ehrenberg family

Terri Guzman is an Advocate for Hope volunteer with Gift of Hope because of the loss of her good friend, Jan Ehrenberg, 15 years ago. “Jan was a teacher, mother, daughter, sister and friend to so many,” Terri explains. And she was an ardent Chicago Cubs fan. In fact, she met her husband at Wrigley Field. But most important, Jan was an organ and tissue donor.

On April 11, 1999, Jan suffered a fatal head injury while playing a game of co-ed basketball. “She fought valiantly for four days, but on April 14th the doctors knew she was not going to recover,” Terri says. That’s when Vince, Jan’s husband, said “yes” to the question of organ and tissue donation. “Please know that telling your family that you want to be an organ donor is showing your generosity to them,” Terri says. “You can give comfort to your family that even in your passing you live on.”

After Jan’s death, her friends and family established the Jan Ehrenberg Scholarship Foundation (JESF) to continue Jan’s legacy as a teacher. Raising funds brought Terri to an event where Chicago White Sox players were signing autographs. “I am a true-blue Cubs fan, just as Jan was, so this was a stretch for me,” Terri says. But she had a baseball to be signed for the benefit, so she stood in line holding some brochures for JESF.

Jan and her kids

Jan and her kids

That’s when she met Mike Papineau, who asked about the brochures. Terri told Mike about Jan, and Mike told Terri about his kidney transplant. They shared the information they knew about dates and donor/recipient details. “We both knew right there what had happened,” Terri says. “I had randomly met my friend’s kidney recipient.”

Mike’s family and Jan’s family met a few weeks later — a group of die-hard Cubs and White Sox fans together at a barbeque. “They joked about the irony of the Cubs/Sox connection,” Terri recalls. Later they made a friendly wager: If the Cubs won the cross-town series, Mike would wear a Cubs hat at the JESF Golf Outing, and, if the Sox won, Terri would wear a Sox hat. The Cubs won.

In 2005, after five years of Cubs outings, JESF decided to do a Sox game instead. “Mike brought lots of friends,” Terri says. And strangely, later that year, the Sox won the World Series. “I think Jan had something to do with that,’ Terri says.


Two People, Three Organ Transplants, Immeasurable Gratitude

April 23, 2014
Donna Ramusack -- an advocate for the Hospitals for Hope campaign.

Donna Ramusack — an advocate for the Hospitals for Hope campaign.

Donna Ramusack has been a registered nurse for 50 years, but none of her training prepared her for medical challenges she faced in her own family. The first came when her daughter, Leslie, was diagnosed with dilated cardiomyopathy and learned she needed a heart transplant to live. “Her diagnosis sent shockwaves throughout our family,” Donna says. “Could this have been prevented? Would her name ever make it off the transplant list?”

They also wondered if other family members would face similar fates. Leslie was fortunate because, after being listed with a major transplant center, she had to wait only two months to receive her heart transplant on April 1, 2001. After her daughter’s recovery, Donna said she thought her family had put the worst of the disease behind them. “But I began to experience the same symptoms of breathing difficulties and fainting spells that I had watched my daughter battle,” Donna says.

After a complete workup at a transplant center, Donna was told that, in addition to a new heart, she also needed a kidney transplant. “I was fortunate to receive transplants after seven days on the transplant list,” she says. They both came from the same donor. It was June 17, 2004, only three years after her daughter’s surgery.

The Ramusack family

The Ramusack family

“I feel profound gratitude to my donor’s family,” Donna says. “I know that a difficult and emotional decision was made by the families for both of us.” Just eight days after surgery, Donna was discharged to begin rehab. “I credit my stellar surgical team and the nurses for providing exceptional care and helping to expedite my recovery process,” she says. “I also had tremendous support from my husband and family.”

Donna now makes the most out of every moment and never takes the things that life has to offer for granted. “A near-death experience makes you worry less about the little things and focus on the things that are important,” she says. “Life gives you may challenges, and you can either go down in defeat or rise up in victory. My daughter and I chose the latter.”

Donna is now an Advocates for Hope volunteer with Gift of Hope. She is promoting organ and tissue donation at the hospital where she works and at churches, schools and other organizations. “I find there are still many misconceptions about donation, and I hope to calm those fears,” she says. “I wouldn’t be here today if it wasn’t for that gift of life made by my donor family 10 years ago.”


The Gift of Life: Better Than Any Diamond

April 22, 2014
Latrisha and her boyfriend Chris

Latrisha and her boyfriend Chris

Better than any diamond, Latrisha Beckwith received the ultimate gift of love from her boyfriend, Chris, on Valentine’s Day 2012.

“Most girls get a ring. I got a kidney,” she says with a smile.

The couple met two years before, soon after Latrisha relocated to Chicago from California. Stress from the move, finding a job and adjusting to a new city left her feeling ill with little energy left over to think about dating.

“Love was the farthest thing from my mind, but Cupid was already busy working,” she recalls. “I fought it, but Chris was vehemently persistent as if he knew something that I did not.”

Latrisha found a job, but she continued to feel ill. During a health screening at work, her blood pressure was alarmingly high. She was admitted to a hospital, where tests showed she had been living with lupus for some time. The disease left both kidneys with minimal function. She was just 30 years old.

“Chris and I had only been together for four months,” Latrisha says. “I didn’t expect him to stick around after all of the physical changes, like the loss of my hair due to medication. But he proved me wrong. He was with me at the hospital every single day.”

Chris even offered to donate his kidney: He was a donor match.

Latrisha and Chris on Valentine's Day prior to surgery.

Latrisha and Chris on Valentine’s Day prior to surgery.

Instead of pursuing that course, Latrisha, a “silent skeptic,” decided to sign up for the organ transplant waiting list, preparing for a wait of three to five years. Nearly two years of challenging and draining dialysis treatments followed. She tired easily and had to coordinate her life around dialysis treatments and restrictions needed to stay alive.

By Valentine’s Day, Latrisha decided to accept Chris’s offer, her name was officially removed from the transplant list and Chris gave Latrisha the gift of life as a living donor. The two recovered well from the surgeries, and Latrisha has noticed a remarkable difference since receiving her transplant.

The final glance between Chris and Latrisha prior to transplant.

The final glance between Chris and Latrisha prior to transplant.

“I’ve got get up and go now,” she says. “Before, I would get tired walking a few blocks or even up a flight of stairs. Now, I feel better than ever. I enjoy life without limits.”

Latrisha says she wants to share her story and make people aware of the urgent need for donors. “Every 10 minutes, another name is added to the national organ transplant waiting list, and more than 120,000 people, including 5,000 in Illinois, are waiting for transplants. Sadly, 18 people die each day waiting.”

Everyone can help by becoming a registered organ and tissue donor, Latrisha says. “Say ‘yes” when you get or renew your driver’s license or register your decision at GiftofHope.org.”


As One Life Ends, Another Begins

April 21, 2014
Chris

Chris

The message from two policemen at the door was every parent’s worst fear.

“Is Christopher Michaels your son? There’s been an accident,” one officer said.

Paramedics returning from another call were on the scene within moments after Chris was struck by a car Aug. 6, 2013. He was rollerblading home after volunteering at a local YMCA event.

Doctors at the hospital didn’t hold out much hope. Chris had suffered severe head trauma and was on a ventilator. He never regained consciousness. He was just 22. So strong, so handsome and so full of life.

Representatives of Gift of Hope Organ & Tissue Donor Network asked if the family would consider organ donation for Chris — he was a registered donor. Their approach was gentle, but his mom, Jane, was in shock.

After a few hours, Jane was ready to honor Chris’ commitment. His brother, Dan, asked if the family could choose who would receive one of Chris’ kidneys — make a “directed donation” — if there was a match with the father of Dan’s close friend. He had been on the kidney transplant waiting list for some time.

The Gift of Hope representative took all of the information needed for a directed donation, and, later, the two families were thrilled to learn there was a match. The chances are rare.

The last good-byes were peaceful. Family had time alone with Chris to talk and pray. They walked arm in arm with Chris down the hall to the door of the operating room where Chris would offer the gift of life. Still, it was heartbreaking to let him go.

One lasting impression was that every member of the Gift of Hope team was extraordinarily kind and compassionate to the family. They always treated Chris with the utmost respect and dignity.

“They did, in fact, give us hope that Chris’ death was not a waste of a precious life, but that he will indeed live on in others,” Jane said. “He will always live in our hearts.”

Twenty years was just not enough time with Chris. He was born on March 22, 1991, on the island of Cebu in the Philippines and joined his family through adoption just after his second birthday.

Chris loved coaching a boys’ traveling soccer team after he graduated from high school and worked in a warehouse. He liked helping others and feeling like a big brother; he was the youngest of three children.

Dan and Jane had the wonderful opportunity to visit with the man who received Chris’ kidney, along with his family, and see how well the dad is doing and what a remarkable difference Chris has made in his life.

Dan’s friend is getting married this summer, and everyone looks forward to seeing his dad dance at the wedding. Chris was a good dancer. Perhaps Dan’s father will have some of Chris’ moves on the dance floor.


La Vida de Uno Afecta a Muchos: The Life of One Affects Many

April 20, 2014
The McKean Family

Colin with his sister Katie and niece Elli

Colin McKean was only 14 when his body started to tell him something was wrong. “I had a rash on my chest, had begun to grow a ‘beer belly’ and my platelet level was extremely low,” he says. After two years of monitoring these symptoms, jaundice set in, and a CT scan revealed his spleen was significantly enlarged. Further tests revealed that Colin had liver disease and cirrhosis.

“The prognosis was not good,” he recalls. “About 88 percent of my liver was compromised, meaning my case was extremely advanced.”

The only solution was a liver transplant.

Colin barely understood the transplant concept, but he did understand that, for him to survive, someone else had to die. “I remember being so overwhelmed by that thought,” he says. “How do you respond to that? You certainly don’t pray for it to happen, but when you pray for your own health, are you not praying for someone else to lose his or hers?”

In May 1996, Colin received his life-giving call, and within 24 hours he had a new liver. “Once I got past the first 48 hours, I was able to reflect on the series of events,” he says. “I remember asking the nurses about my donor, but they could just give me some basic details, nothing traceable.” Later, Colin wrote a thank you note to the family telling them “who I was, where I was from and how I planned to make the best of this opportunity granted to me by their loved one’s selfless choice to be an organ donor.”

Colin went on to graduate from college and today works as an engineer. “I also volunteer with Gift of Hope and other organizations, spreading the important message of organ, tissue, eye and blood donation,” he says.

Colin remembers reading a saying during one of his visits to the transplant clinic after receiving his first transplant: La Vida de Uno Afecta a Muchos: The Life of One Affects Many.

“There are very few days that pass when I don’t think about that saying, how blessed I have been and all of the wonderful, caring people who have made it possible for me to be alive today,” he says. “In the end, the message is quite clear: La Vida de Uno Afecta a Muchos.”


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