BIXBY — Rachel Tafoya had one doctor after another tell her that her time on Earth was limited.
Born with Tetralogy of Fallot, a heart defect at birth, she underwent surgery after surgery for nearly 40 years.
Then, about two years ago, she felt the end was near. She could no longer walk or drive. She was tired all of the time.
“For an entire year, I spent all of my time under a blanket on my couch or in my bed,” Tafoya said. “We were working with hospice, preparing for what happens next.”
Then, something extraordinary happened. Dr. Wayne Leimbach, her Tulsa cardiologist at Oklahoma Heart Institute, told her about an experimental procedure being done in St. Louis.
“I didn’t even know if I could ride all the way to St. Louis,” she said. “We made it. I saw the doctor. Dr. Joseph Billadello said there was a relatively new surgery that might work.”
That was year ago. Tafoya and her husband, Vince, along with children Alexandria, 17, and Joshua, 7, no longer talk about hospice.
They talk about a future together.
“I can’t believe how much different I feel,” Tafoya said. “I know I still have issues with my heart. I understand that. But, for the first time in a long time, no one is talking to me about an expiration date on my life.”
Tafoya, referred to Barnes Jewish Hospital in St. Louis, had a surgery for a Melody valve.
This is a different option to take care of a leaky or narrowed connection between the heart and lungs without open heart surgery.
A thin hollow tube (catheter) with a specially designed heart valve inside is inserted in a vein and pushed up to the heart. The heart valve is from a cow’s vein that has been attached to a wire frame.
The new valve is guided through a vein to the heart where the new valve replaces the old one.
It allows the heart to properly pump blood.
Barnes Jewish Hospital in St. Louis is affiliated with the Heart Center at St. Louis Children’s Hospital. The Heart Center at St. Louis Children’s Hospital has recently seen a string of complicated cases with successful outcomes.
Two weeks after she went to St. Louis, she had surgery for the Melody valve.
She was in and out of the hospital in three days.
“I still have heart issues and I understand that,” said Tafoya. “But, it is an absolute miracle. Just like my children are a miracle for us. I have more time on Earth.”
Tafoya is 44, many years and 12 surgeries since the 3-year-old girl from rural Arkansas first underwent open heart surgery in Little Rock.
She had major surgery again at 13 when she had outgrown the valve that was placed in her 10 years earlier.
In 2002, she was told she needed a surgery again but because of the toll from the first two surgeries, she was told to prepare for the worst.
“The night before the surgery the doctor came into my room and told me to be prepared to say goodbye to my family,” she said. “I had already been through this so many times. My entire life I had been told by doctors they didn’t know how much longer I had.
“When you hear people talk about heart disease you almost always think about older people. But, for so many years in my life, I’ve been in hospitals and doctors’ offices with very young children. I always pray that those children will live long enough for the doctors to find a cure for those children.”
The latest operation is not a cure.
“I still have heart failure but this is the best I’ve felt in a very, very long time,” she said. “I go to physical therapy. I do errands. I go grocery shopping and do things around the house.
“I’ve been told my entire life that it may be just a matter of years. Or, it was a matter of months. I feel a whole new sense of hope.”
Billadello believed the new procedure, to replace the valve without open heart surgery, was a possibility for Tafoya.
“We felt like she was a candidate to have the valve put in without surgery,” Billadello said. “Fortunately, she has done very well.
“It is a relatively new technique, just developed over the last five to 10 years. We’ve found this technique to have a high degree of success.”
Her surgery was a year ago this month.
“She has had a very nice response,” Billadello said. “She is able to be much more active. We are very well pleased with her progress.”
Tafoya is so optimistic she’s talking about taking a vacation in the next year.
Plus, she will be around to watch her daughter, who aspires to be a writer, go off to the University of Tulsa. Her son is looking forward to school in Bixby.
“Before I was sent to St. Louis, it had reached the point where I felt like I had pneumonia and the flu and everything else all of the time. I just didn’t feel good. I could feel my body shutting down. I knew my time was short.