At a recent holiday luncheon for heart transplant recipients at Kaiser Permanente Santa Clara, Gianna Panigua spoke of a lifetime experience as a heart transplant recipient. She is 25 years old.
“I received a heart transplant when I was 14 months old,” said Panigua matter-of-factly. “I was one of the youngest heart transplant patients at what is now the Morgan Stanley Children’s Hospital of New York-Presbyterian.” She’s one of the longest-living transplant patients in Northern California.
As an infant, Panigua was diagnosed with hypertrophic cardiomyopathy (or HCM), a thickening of the heart muscle that makes it difficult to pump blood. HCM can lead to sudden cardiac death. Panigua’s new heart was from a young child and she hopes it has grown as she has. She’s constantly aware of the possibility of organ rejection.
“I feel chest pains some of the time,” said Panigua who is now a patient of Kaiser Permanente. “It keeps me aware. I’ve never known anything except being a heart transplant recipient.”
Panigua has endured several episodes of organ rejection and credits her cardiac care teams in New York City, Pittsburgh where she lived for a time, and now Kaiser Permanente Santa Clara, with helping her manage and come through the organ rejection crises.
Organ rejection is a common worry among transplant recipients and this was a topic of discussion among many of the 70 transplant recipients at the Kaiser Permanente Santa Clara annual holiday luncheon. But unlike Panigua, most recipients get their new hearts in middle age after suffering heart failure or other end-stage cardiac diseases, not at the beginning of their lives.
Kaiser Permanente’s expert cardiologists treat and evaluate them for transplant. The surgery is done elsewhere. After surgery, patients return to Kaiser Permanente for long-term care. Kaiser Permanente’s transplant team has overseen some 400 patients who received new hearts in the program since it started in 1994.
Janet Stevenson, Licensed Clinical Social Worker (LCSW), has been with the transplant program since it started seeing patients at the Kaiser Permanente San Jose Medical Center and moved to Kaiser Permanente Santa Clara in 2007.
“We see heart failure and heart disease patients from all of Kaiser Permanente’s 21 Northern California medical centers,” she said. ” But over the years, we’ve seen fewer and fewer donor hearts available for transplanting into our patients.”
Stevenson says technology is now playing a role in prolonging the lives of many Kaiser Permanente heart failure patients, including with Left Ventricular Assist Devices (LVADs). It’s a small, battery powered pump, worn on the waist, with tubes running through the chest wall, helping the left ventricle of a failing heart to effectively pump blood to the rest of the body.
“It’s my portable life-saving device,” says Tim Prendergas, a heart patient from Fresno. His first LVAD from six and and-a-half years ago was big, bulky, and uncomfortable. Technical advances now allow him to carry batteries for his third LVAD under his jacket.
Originally, LVADs were considered bridges to heart transplants for patients with a failing hearts. Today they can be destinations and patients can live for many years with an LVAD.
We don’t yet know if it’s possible to live more than 25 years with an LVAD. But Panigua’s 25 years as the recipient of a donated heart shows that it’s definitely possible to live 25+ healthy years following a heart transplant. And she says her cardiac care team at Kaiser Permanente Santa Clara is “the best team I’ve ever had.”
“That’s a very significant statement,” says Dr. Dana Weisshaar, Kaiser Permanente’s Regional Director of Transplant. “Transplant patients become very attached to their cardiac care teams. Here at Kaiser Permanente Santa Clara, we work very hard to help our transplant patients thrive.”
