“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
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.
Caleb was able to give sight to others through is decision to be a donor.
Sheila and Terry Walters’ son, Caleb, was killed in a motorcycle accident shortly before his 21st birthday in 2008. The family was devastated, but they remembered that Caleb wanted to be an organ and tissue donor. Unfortunately, the coroner ordered an autopsy, so the time needed to conduct it would prevent organ donation from happening.
Sheila and recipient Cyndy
“We knew Caleb wanted to be an organ donor, so we wanted to honor that wish,” Sheila said. “We wanted something good to come out of our loss.” The Walters left the hospital that day shattered and broken, first, by the loss of Caleb and, second, because they could not honor his wish to be an organ donor.
“It’s difficult to tell you how joyful it felt to receive a phone call from the Illinois Eye-Bank just hours later at home,” Sheila recalled. “Surrounded by friends and family on our deck on a beautiful and tragic day, our flag flying outside at half mast, tears of joy began filling our eyes at the hope that Caleb could be a cornea donor. We could do one last thing for our son and positively enhance the life of another. His life and legacy of helping others would continue; he would make a difference.”
The Illinois Eye-Bank has been a blessing to the family, Sheila said. “It helped us focus during our grief. It gave us a positive outlook on life and death. It helped us see that this is not just about us and our loss but about others and love.” Sheila and Terry are now volunteers for the Illinois Eye-Bank. They have shared their story, signed up new donors and “adopted” recipients who don’t know their donor families.
The Walter Family finds comfort in Caleb’s gift of sight.
Sheila and her family feel God is helping to heal their broken hearts through Caleb’s cornea donation. “Being in touch with Caleb’s recipients has brought comfort,” Sheila said. “I feel so relieved to know that Caleb’s corneas are making a difference in their lives.” And through their work with the Eye-Bank, Sheila said they have witnessed “first hand the reason and purpose for organ and tissue donation on a human level.”
Otto Abel was only 50 years old when a sudden stroke took his life in November 2007. His wife, Patty, and his two children, Natalie and Nathan, were shocked and devastated.
Otto was an avid hunter and fisherman, an active board member of the Harvard Sportsman’s Club and an ardent nature lover. “He was young, and his death was so unexpected, “ Patty said.
As an employee of OSF Home Care, Patty is no stranger to end-of-life issues, but she had never discussed the subject with her husband. When the hospital staff asked if Otto was a registered donor, Patty said she didn’t know. “And deciding for him wasn’t possible when I was trying to come to terms with the fact that he was gone,” she explained.
Otto enjoying a day on the lake.
But Otto saved Patty that heartache because he had registered as an organ and tissue donor. “The hospital staff looked him up in the donor registry and confirmed his intentions,” she said. “This relieved me of the burden of making that decision for him.”
Otto’s decision had wonderful results. Steve Heller is alive today because Otto registered to be a donor. At the time of Otto’s death, Steve had been ill for 11 years and on dialysis for more than a year. After undergoing transplant surgery and receiving Otto’s kidney, Steve no longer needs dialysis and is living a happy, normal life.
“Our family will always carry the pain of losing Otto,” Patty said. “But his gift to Steve has brought us comfort because we know that in his death Otto saved Steve’s life.”
Donovan Degelau was overjoyed when he learned he was a living donor match for his father, who needed a liver transplant. “The liver is not nearly as picky as some organs,” he said. “And lucky for us, we got the green light.”
Donovan’s father was suffering from primary sclerosing cholangitis, a chronic disease that damages the bile ducts of the liver and slowly causes the liver to lose its ability to function. “Dad’s disease could only be helped by a liver transplant, and he was not moving up the list quick enough to keep him from losing to its damage,” Donovan explained.
Donovan expected the surgery to take seven or eight hours, but he was greatly disappointed when he awoke to learn that the procedure had been aborted because of a problem with his portal vein and atypical branches in his liver. “They had to close my father up with his failing liver still in him,” he said. At that point, Donovan’s father had only two to three days to receive a liver that would save his life.
Donovan’s dad is alive today thanks to a selfless donor.
“We needed a gift, and our prayers were answered the next evening,” Donovan explained.
A 50-year-old woman had lost her life that night. Donovan said that her courage to be a donor had given life back to his father.
“On December 18, 2003, my father got his transplant and began his path back to a life he could enjoy with his family,” Donovan said. “It has been almost 10 years, and my dad is doing great. He knows that every day is a gift that must be cherished.”
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.
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.
Micaela Prunty was born a normal, healthy, beautiful baby girl. But at three months of age, her mother, Isa Rodriguez, noticed something was “just not right.” Micaela’s tummy was distended, and her skin color was changing, Isa said.
Micaela was diagnosed with biliary atresia, a rare liver disease where the flow of bile from the liver to the gallbladder is blocked. It affects only one in 10,000 live births. By the time Micaela was five months old, doctors determined that her liver would not function properly and she would need a liver transplant. She was placed on the transplant waiting list.
Shortly after Micaela went on the list, her health began to fail, and her mother asked to be tested as a potential living donor. “By God’s grace, I was a perfect match,” Isa said. “I was able to donate a portion of my liver to Micaela.”
Micaela
On May 31, 2001, at eight months of age, Micaela received her liver transplant. “She did really well in her recovery,” her mother recalled, “and on June 15, only 15 days post-transplant, Micaela came come.” Isa said Micaela had to deal with a few bouts of rejection, but she overcame every obstacle.
Today, Micaela is 12 years old and in sixth grade. She likes to play the piano and read books. “She’s doing all the normal things that 12-year-old pre-teens do,” Isa said. “Someday she wants to work for NASA and, knowing how strong she is, I believe her hopes and dreams will all continue to come true.”
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.”
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.
Gift of Hope Organ & Tissue Donor Network is a not-for-profit organ procurement organization entrusted with coordinating organ and tissue donation and providing donor family services and public education in Illinois and northwest Indiana. .
This blog focuses on outreach initiatives, expert insight and commentary pertaining to the organ/tissue donation community.
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