The Challenge: Complex Congenital Heart Disease
It has been a long journey for Jennifer Robertson. Born in 1975 with two serious congenital heart defects — tricuspid atresia and transposition of the great arteries — she was a classic “blue baby” due to lack of oxygen in her blood.
A tube inserted in a shunt procedure during infancy allowed blood to get to the lungs for oxygen, enabling Jennifer to lead a fairly normal life until her teenage years. She had her first open heart surgery at age 17 after her breathing problems became serious.
The cardiologists at UPMC Children’s Hospital of Pittsburgh continued to treat Jennifer over the next two decades.
“My heart defects were so complex. But they knew me and my story,” says Jennifer. “There was never a cure, but there was always something they could do to help me — medication, surgery, a pacemaker, defibrillator.”
But in 2015 at age 40, Jennifer’s condition deteriorated as her oxygen levels and circulation worsened. Her doctors at UPMC Children’s Hospital told her there was nothing more they could do for her there; she was going into heart failure and needed a heart transplant.
The Solution: A New Heart
On July 4, 2017, Jennifer was officially added to the transplant list as a “1B.”*
“That meant I was sick enough to need a transplant, but I could wait at home,” she says. “I just couldn’t be more than two hours away in case I got a call about a match.”
At this point, Jennifer didn’t want to travel anyway.
“I felt awful. I was going into congestive heart failure, so I had a lot of fluid build-up,” she says. “I couldn’t sleep because I was worried that I wouldn’t wake up. I also worried about getting the call for a new heart, because that would mean someone else had passed. How could I wish for that?”
Two months later, Jennifer’s worsening condition prompted Dr. Hickey to admit her to the hospital, moving her up to status: 1A.*
While waiting for her heart, Jennifer grew close to other patients and staff. She and her husband, Jim, even had weekly “date nights” with another patient, Michelle Hagerty, and her husband — watching movies or eating meals together.
On Jennifer and Jim’s 10th anniversary in October, the nurses arranged a surprise celebration for the couple in the lounge: a candlelight dinner from an Italian restaurant.
“I met the most amazing people at UPMC Presby,” says Jennifer. “Although it didn’t seem so at the time, we say that was our best anniversary. It was fantastic.”
A Grateful Recipient
On November 12, Jennifer received a call offering to make her UPMC’s second recipient of a donor heart that tested positive for Hepatitis C antibodies (but not the disease). Would she accept it? Without a moment’s hesitation, she replied “Yes!” At the stroke of midnight the next day, November 13, her operation began.
It was a long and complicated surgery made more difficult by the amount of scar tissue from her previous open heart surgeries and implants.
“Dr. Sciortino said it was going to be tough and that I needed to be patient. I had to take baby steps,” says Jennifer. “He was right.”
She spent weeks in intensive care after her surgery; she needed dialysis because of compromised liver and kidneys.
Two months after the transplant, Jennifer returned home. Three months later, she was able to go off of dialysis. A year later, she got a new pacemaker, which resolved some rhythm issues she was experiencing.
At her two-year check-up in December 2019, "things looked great,” she says.
“No one can believe that my kidney function is normal; My bloodwork is excellent with no sign of rejection, and they tested my arteries and everything is clear,” adds Jennifer. “I get up in the morning and I can breathe! I can exercise, shop and walk my puppy — things I couldn’t do before."
“My donor saved my life and I’m so grateful. But Dr. Sciortino was wonderful. He never gave up on me. I honestly believe he is the reason I’m here today,” says Jennifer.
“This journey taught me a lot about patience and faith and celebrating life. Every day I thank God. I feel so lucky and so blessed to be here.”
*A new allocation system for listing statuses was implemented in 2019, and letters are no longer used with numbers to designate heart failure status.”
Jennifer’s treatment and results may not be representative of similar cases.