“You can live in the past, and you can let your diagnosis dictate your life, but it’s not any fun.” – Barb Sheble
Today, Barb Sheble is the picture of health. She has won a total of 20 medals competing across the globe in shot put, discus, javelin, and several other events. But it has been a long and bumpy road to get to this point, with no shortage of perseverance.
Nearly 30 years ago, Barb was a Freshman at Kansas City Kansas Community College when she collapsed at track practice. She went to two doctors to find out why she was feeling nauseous and fatigued. But after running several tests, she was cleared to return to practice.
A few months later, Barb was feeling so sick that her parents called 911 and drove her to the emergency room. She passed out again.
Barb was given medicine to slow her heart rate, but the medication had the reverse effect. Her medical team turned to a defibrillator to stop her irregular heartbeat.
“They shocked me for 16 minutes before getting me back,” Barb said. “So, the fact that I have a brain left is a miracle.”
Barb was transported to Saint Luke’s and diagnosed with a rare form of cardiomyopathy, in which abnormal heart muscle is replaced with fatty fibrous tissue.
The condition usually occurs in teens or young adults and can cause the heart to suddenly stop beating in young athletes, just like Barb.
After she figured out what was wrong, Barb was able to manage her irregular heartbeat well for many years. She was able to travel, finish out college, earn a second bachelor’s degree, and start working full time.
But in 2008, Barb knew her health was heading in the wrong direction. She was having trouble more and more often. She was in the doctor’s office or hospital at least once a week for four and a half months.
Doctors performed yet another one of many ablations on Barb’s heart to burn the tissue causing her recurrent cardiac arrests. That’s when her doctor at a local hospital decided it was time to send Barb to Saint Luke’s for a full evaluation.
Dr. Andrew Kao, the Medical Director of Heart Transplantation at Saint Luke’s Mid America Heart Institute, deemed it was time to put Barb on the waiting list for a heart transplant.
“We found that she was extremely ill and needed a heart very soon,” Dr. Kao said. “She failed all the medicines that we could offer her, so it was literally a race against time. We found out she was a perfect candidate for a transplant, so we got her listed.”
Barb patiently waited for a new heart, not knowing when it may come.
“When I would get frustrated, a friend of mine would say, ‘your heart’s not ready yet. God has the perfect one picked out for you, and it’s just not ready yet,’” Barb said.
Eight months later, Barb finally got the good news she had been waiting to hear. She was fortunate in that her wait for a new heart was much shorter than the national average of 18 months or longer.
Barb received a heart transplant on August 18, 2009.
“When we took the heart out, Dr. Borkon [her heart surgeon] mentioned after transplant that it was one of, if not the ugliest ones he had taken out,” Barb said. “It was about the size of an NFL football.”
Her heart was enlarged because of the buildup of fatty fibrous tissue. Her condition also caused the right side of her heart muscle to die and turn black.
Since getting her new heart, Barb has dealt with a few minor setbacks. But she has also been able to do countless things she believes she would not have been able to before her heart transplant.
“I’ve been able to be a part of my sister’s wedding, be a part of my nephew’s wedding,” Barb said. “My nephew now has a baby, and I get to watch her grow. I watched my niece play college basketball. I could go on and on.”
Barb did not let her history of health issues keep her on the sidelines. Just a few years after her transplant, she pushed herself even further and started competing in the U.S. Transplant Games. She then moved on to compete in the World Transplant Games.
Barb has traveled to South Africa, Argentina, Spain, and many different parts of the U.S., all while making new friends and meeting other donor families.
This August, she plans to celebrate a significant milestone at the World Transplant Games in England—her 10th anniversary with her new heart.
“Without an amazing donor and donor family, and the amazing family and friends that I have, and obviously I have fantastic care teams—I wouldn’t be here without all of that,” Barb said.” “It’s just been an awesome journey. I’m grateful for everything Saint Luke’s has done for me.”
Barb has generously given back to the transplant program by volunteering for Saint Luke’s and the Midwest Transplant Network. She serves as a mentor to people waiting for transplants, raises money for patients and donor families by organizing an annual fundraising golf tournament for people competing in the transplant games —all without asking for credit.
In January, Saint Luke’s Health System recognized Barb as the Saint Luke’s Survivor Seat honoree at Kauffman Center for the Performing Arts.
“Barb embodies the spirit of survival,” Dr. Kao said. “She has never, ever complained. She always tries to lift everyone else up, even though we are the ones who should be lifting her up. And she gives so much of herself to other people. She would give the shirt off her back.”
As of Feb. 4, Saint Luke’s has performed 814 life-saving heart transplants.
Learn more about our heart transplant program or call Saint Luke’s Heart Failure and Transplant Clinic at 816-932-3264.