Once sidelined by dilated cardiomyopathy, Westchester resident is back on track thanks to a donor heart
BY kATHY CICHON For Sun-Times Media
Chloe lives on: Linda Coleman listens to Westchester resident Melissa Simon's heart, which Simon received as an organ transplant. The heart Simon received was from Coleman's daughter, Chloe. | Supplied photo
Did You Know?
According to the American Heart Association, approximately 2,200 patients receive heart transplants each year.
Upon reaching the top of Chicago’s John Hancock Center last year, Melissa Simon of Westchester was met by Jon and Linda Coleman. There, the North Carolina couple used stethoscopes to listen to the heart beating inside Simon’s chest.
The same heart that used to belong to their daughter Chloe.
Like most teenagers, Melissa Simon never expected to hear she had heart disease.
At age 14, she was diagnosed with dilated cardiomyopathy, which is an enlarged and weakened heart.
“There was about a year from the time I was diagnosed where I was on bed rest, to when I was able to get back to a somewhat normal life,” said Simon, now 31.
With the help of cardiac rehabilitation, medication and therapy, she was able to return to school. But the active teen could no longer participate in certain activities, such as cheerleading.
“It was difficult because I knew my whole life would change,” Simon said. “You just want to be normal. You can go to prom, you can go to golf. (But) this condition isn’t going to stop.”
When she was 18, she got a pacemaker — her first of three. She didn’t tell many people.
“I wanted to just fly under the radar and be as least noticeable as possible,” she said. “Nobody knew I had heart disease unless they saw the scar.”
The pacemaker would save her life twice, shocking her when her heart rhythm was greater than 300 beats per minute.
After attending college and starting a career in marketing, her condition began to worsen. When she was 26, she started feeling “a little slow,” she said.
“I kept blaming it on the winter,” Simon said.
While she had a regular appointment with her cardiologist that March, she “never made it to that March appointment because I was just getting weaker and weaker.”
Simon soon found herself in the intensive care unit, where she learned she had developed cardiac tamponade, which is the compression of the heart caused by fluid build-up between the heart muscle and the outer covering sac of the heart. She was taken into emergency surgery at Northwestern Memorial Hospital.
“When I woke up from the procedure, they said ‘you are not going to leave the hospital. You are listed for a heart transplant,’” Simon said.
At that point, her heart was working at about 10 to 15 percent of the level of a healthy heart.
“I needed life-saving medication to keep my heart going,” Simon said. “That was kind of a rough road. I never thought in my life I would need a heart transplant.”
New lease on life
A few weeks later — on June 6, 2007 — she had the transplant surgery.
“That’s really a short amount of time,” Simon said. “Most people wait months. I was also so sick I was at the top of the list. A lot people wait two to three years. I was very fortunate it came so quickly.”
She received the heart of 14-year-old Chloe Coleman of Chapel Hill, N.C.
Seven days later, while still in the hospital, Simon celebrated her 27th birthday. Saying she just needed “that new pump” to get her going, she was able to return to work less than two months after the transplant.
She credits her parents and husband, Dave, with helping her through the illness as well as adjusting to lifestyle changes since the surgery. Simon will remain on medication for the rest of her life. Now, she takes 22 pills a day, about half of which are vitamins. She eats a heart-healthy diet and tries to participate in more physical activities than she previously could.
“My heart itself is not sick anymore,” Simon said. “I can do more than I ever did before.”
For the last three years, she has participated in the “Hustle Up the Hancock,” climbing to the 94th floor of the skyscraper to raise money for lung disease research and education. The climb fits with her goal of being more active.
“That was part of my mission, to do something for my donor, who was just an amazing athlete,” Simon said. “I’m not athletic. I love doing it every year to honor her.”
Making the connection
Three years ago, Jon Coleman saw a video Simon made for the American Heart Association that is posted online. He realized she had received Chloe’s heart. Eventually, the two families connected. Simon learned about Chloe, who had been involved in a variety of sports including lacrosse, gymnastics and was named Most Valuable Player of her basketball team.
Last year the Colemans decided to come to Chicago for the Hustle Up the Hancock event and cheer Simon on. But they also met her at the top, where they used the stethoscopes to listen to her heart beating.
“They were obviously very emotional, and everybody was,” Simon said. “Any other organ, they don’t make noise. But the heart...”
While Simon has become more physically active, she has also become a bit of an activist. She tries to help the American Heart Association by telling her story to help others with heart disease. She serves on the committee for the Association’s Go Red for Women campaign, last year raising more than $5,000. In her lifetime, she has raised more than $100,000.
“I’ve seen in my life so many improvements,” Simon said. “I’m very passionate about helping them make more.”
She also urges others to pay attention to the signals their bodies send them. If you feel like something is wrong, talk to your doctor, she said.
“Heart disease symptoms is not just feeling short of breath. It can be feeling like you have the flu. That was the only symptom I had,” Simon said.
And she urges people to register for organ donation, even if they don’t think their organs could help someone.
“The people who are waiting are a lot sicker than you,” Simon said. “You can’t disqualify yourself. The doctor can determine that.”
Simon is also making sure the memory of Chloe Coleman lives on in more ways than one. Last year Simon and her husband’s household grew to three with the birth of their daughter.
“It was pretty immediate,” Simon said of picking out a name. “The day we found out it was a girl, we knew we would name her Chloe.”
Because of the transplant, doctors were concerned about Simon going through pregnancy. They decided to use in vitro fertilization, with the help of a surrogate who carried the baby for nine months. The couple welcomed their daughter on Nov. 3, 2011.
“We’ve definitely had many blessings,” Simon said. “Our lives have been enriched by a lot of people, that’s for sure.”