Knocked for a Lupus

April 18, 2014

LUPUS (LOO•puss, n.): A chronic autoimmune disease in which the body develops antibodies that react against its own normal tissue. More than 2 million people in the United States have the condition, more than cystic fibrosis, cerebral palsy and multiple sclerosis combined. Symptoms include extreme fatigue, swollen or painful joints, fever, rashes and kidney problems.

Yessenia and her husband Cory

Yessenia and her husband Cory

Yessenia Wallace says she never heard the word lupus until her doctor diagnosed her with the disorder in April 2005. “I started to realize that every time I got sick, whether it was a cold or something more serious, I would have a lot of pain and feel unbelievably tired,” the Gift of Hope Advocates for Hope volunteer relates. “My hair even started to fall out. After years of medications and doctor visits, I thought I was finally in the clear.”

She wasn’t. She was hospitalized in 2011 for congestive heart failure, and doctors discovered that her function had dropped significantly. “They believe the lupus caused it,” Yessenia explains. “I was already in Stage 3 kidney failure.”

Her kidney function continued to fall precipitously, from 25 percent to 15 percent in three months. “Dialysis and transplantation were my only options,” she says. “This was easily the most difficult thing I have ever gone through. I remember being so scared and confused as to what my future would hold.”

Now with her lupus under control, the 25-year-old newlywed undergoes daily dialysis treatments and is approaching one year on the kidney transplant waiting list.

Yessina and Cory walking down the aisle

Yessenia and Cory walking down the aisle

“I am so grateful to have a wonderful support system,” Yessenia says. She singles out her husband, Cory, whom she married last September, as being unbelievably supportive. “The entire time we’ve been together he has seen me struggle with kidney disease. He works at the hospital where my testing is done, and it’s so nice that whenever I’m in the hospital he can be with me.”

As soon as she turned 18, long before she became ill or needed a transplant, Yessenia signed up to be an organ and tissue donor “to give someone a second chance or even just to set a good example. It’s amazing how many people don’t know about it. There are 5,000 people just in Illinois who need transplants.”

Her health problems have shown her how important donation is. “So many people need this to give them life again. It brings me to tears to think that someone out there might give me the chance to live a normal life. I’m one of 5,000 people in Illinois waiting for another chance. Every time I see someone’s transplant success story, I think to myself, ‘Thank you, God, for sending us another miracle.’ That’s exactly what donation is, a miracle.”

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So Excited About Life

April 6, 2014
Lisa gets to spend time with her two sons because someone said "Yes" to organ donation.

Lisa gets to spend time with her two sons because someone said “Yes” to organ donation.

Fifteen years after receiving a life-saving kidney transplant, Lisa Givens now has more energy than most people. “I am so excited about life and my two sons, who are now 30 and 23,” Lisa says.

She lives a satisfying life today thanks to the generosity an organ donor.

In 1990, Lisa was a 25-year-old licensed beautician. She finished with her last client one day and noticed that her ankles and hands were swelling. “I immediately knew that something was wrong,” she says. She was rushed to a hospital emergency room where she learned that she had high blood pressure and was suffering from kidney disease. “I was caught off guard with a diagnosis of end-stage renal failure,” she says.

Lisa in front of a memorial to another great organ donation advocate, Walter Payton.

Lisa in front of a memorial to another great organ donation advocate, Walter Payton.

Life changed completely at that point. She went into denial, lost energy and could no longer work, especially after starting dialysis three times a week. “I was barely able to care for my two boys,” Lisa recalls. “I prayed and asked God to allow me to live to see my children reach the age of 18.”

Lisa was placed on the transplant waiting list for a lifesaving kidney. In January 1999, during one of her three-hour dialysis treatments, Lisa received the call that she had been praying for: A kidney match was available for her, and she received her transplant later that same day.

Today, Lisa is an Advocates of Hope volunteer with Gift of Hope, and she is forever grateful for another chance at life. “I am a living proof that organ donation really works,” she says. “I thank my sons for never giving up on their mom. And, most of all, may God bless my organ donor.”


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.


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: 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: Kevin’s Life Song

April 11, 2013
Kevin Smith's love of music helped sustain him through two kidney transplants.

Kevin Smith’s love of music helped sustain him through two kidney transplants.

In May 1989, Kevin Smith was 29, married with three daughters and a musician in Los Angeles when he went entered the emergency room at Harbor General UCLA Medical Center. His blood pressure was 322/218, and he had been suffering from severe headaches, blurred vision and nausea.

He was diagnosed with pheochromocytoma, a tumor that causes the adrenal glands to produce high levels of hormones and raises a person’s blood pressure and heart rate. Kevin was told that his long-term hypertension had caused his kidneys to shrink. “What I wasn’t told, and later found out, was that this often leads to kidney failure,” he said.

Kevin moved to Illinois to be near his family and its support system. Soon after the move, he had another major episode and was diagnosed with kidney failure. He was given emergency dialysis for five days to get stabilized. Then he started routine dialysis and went on the kidney transplant list.

Almost two years later, a donor kidney became available, and he had a kidney transplant. But major complications ensued. That led to seven more operations and, eventually, organ rejection. “I went back on dialysis, and it took several months until I was healthy enough to be placed back on the transplant waiting list,” he said.

Thanks to a selfless donor, Kevin is able to pursue his passion of music.

Thanks to a selfless donor, Kevin is able to pursue his passion of music.

His waiting time was anything but unproductive. During his time on dialysis, he earned his bachelor’s and master’s degrees. Then, in 1994, he received another call and went to Memorial Medical Center in Springfield for a successful kidney transplant.

It has been more than 18 years since his transplant, and everything today is good. “I’m working in education with at-risk children, I’m still playing music and, most wonderful of all, I’m spending time with my three daughters and five grandchildren,” Kevin said.

Share Your Life Song


30 Stories in 30 Days: Amy and Jessica Cowin

April 5, 2013
Jessica (left) and Amy (right) Cowin share a special bond through living donation

Jessica (left) and Amy (right) Cowin share a special bond through living donation

Jessica Cowin was born with a rare heart condition, hypoplastic left heart syndrome. By the time she was five, she had endured three major surgeries. The initial results were good. “I was active in my youth,” she said, “but I eventually noticed that I wasn’t like most kids because I couldn’t keep up.”

When she was 13, she nearly collapsed one day doing some strenuous activities. “I couldn’t catch my breath, the room was spinning and my heart was pounding,” she explained. She went through another surgery to repair her heart and insert a pacemaker, but she continued to experience weakness and fatigue.

At 16, she learned that her only option was a heart transplant. After only three weeks on the transplant waiting list, Jessica had her surgery and afterward “felt healthy, full of breath and energy.” But three years later, she learned that her medications caused gallbladder problems, and she had another operation to remove that organ.

Amy and Jessica were close friends from the start.

Amy and Jessica were close friends from the start.

With no gallbladder and feeling great, she finished her liberal arts degree. But in 2008, she again had symptoms and learned that her kidneys were functioning at only 10 percent: She needed a kidney transplant.

Jessica’s sister, Amy, was a close match and insisted on helping as a living donor. “Amy’s left kidney now sits on my right side,” Jessica said. “I can’t take a photo with her standing on any side but my right because we are a pair of kidneys.”

Now Jessica helps create awareness for organ and tissue donation by telling her story and expressing her gratitude to her donors “for the lifesaving gifts I have received.”


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