Young heart transplant recipient celebrates long life, holidays at Kaiser Permanente

At a recent holiday luncheon for heart transplant recipients at Kaiser Permanente Santa Clara, Gianna Paniagua talked about her lifetime experience as a heart transplant recipient. She is just 25 years old.

“I received a heart transplant when I was 14 months old,” said Gianna 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.”

As an infant, Gianna had been diagnosed with hypertrophic cardiomyopathy (or HCM), a thickening of the heart muscle that makes it difficult for the heart to pump blood. HCM can lead to sudden cardiac death. Gianna’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 Gianna who is now a patient of Kaiser Permanente. “It keeps me aware. I’ve never known anything except being a heart transplant recipient.”

Gianna said she’s gone through several episodes of organ rejection. She 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 other transplant recipients at the Kaiser Permanente Santa Clara annual holiday luncheon. But unlike Gianna, most recipients got their new hearts later in life. They are usually in their 40’s and 50’s and they are referred to the specialists at the transplant program at Kaiser Permanente Santa Clara suffering heart failure or other end-stage cardiac diseases.

KP’s expert cardiologists treat and evaluate them for transplant. The surgery is done elsewhere. After the surgery, they return to Kaiser Permanente for long-term followup 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, LCSW, who has been with the transplant program since it started seeing patients at the Kaiser Permanente San Jose Medical Center when it first opened. The group moved to the new Kaiser Permanente Santa Clara Medical Center is 2007.

“We see heart failure and heart disease patients from all of Kaiser Permanente’s 21 Northern California medical centers. But over the years, we’ve seen fewer and fewer donor hearts available for transplanting into our patients,” said Stevenson.

She says technology is now playing a role in prolonging the lives of many Kaiser Permanente heart failure patients: they get Left Ventricular Assist Devices, or LVAD’s. 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 failure patient from Fresno. His first LVAD six and and-a-half years ago was big, bulky, and uncomfortable. He’s on his third LVAD. He wears batteries for the device in what looks like a police shoulder holster.

Originally, LVADs were considered a “bridge” to a heart transplant for a patient with a failing heart. Now they’re a “destination”, which means patients can live for many years with the LVAD.

It’s not known if someone can live more than 25 years with an LVAD. But Gianna’s 25 years as the recipient of a donated heart makes her one of the longest-living transplant patients in Northern California.

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, Regional Director of Transplant at Kaiser Permanente. “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.”