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Carol Patient Story

I Can Breathe Again: One Patient's Recovery from a Rare Heart Disease

As Carol graduated from the El Camino Health’s Cardiac Rehabilitation Program, she reflected on her health journey.

"It was a long journey, about five cardiologists long to be exact," she recalled.

Carol had trouble breathing for months, but could not get any answers until she saw Dr. Chad Rammohan, a cardiologist and the medical director of the Cardiac Catheterization Lab and Structural Heart disease program at El Camino Health's Norma Melchor Heart and Vascular Institute.

Carol was seen in the multidisciplinary valve program jointly with interventional and structural cardiology, advanced imaging, and cardiac surgery for mitral valve regurgitation, a condition where the heart's mitral valve does not close tightly. Symptoms include shortness of breath, fatigue, lightheadedness, and a rapid heartbeat, and treating the condition requires surgery. Dr. Rammohan was suspicious that her symptoms were also due to a restrictive cardiomyopathy, or heart muscle disease.

"Dr. Rammohan diagnosed me with cardiac amyloidosis, which is a very rare heart disease, and already damaged my heart." said Carol. "He also referred me to an amyloid specialist."

Amyloidosis occurs when proteins called amyloids build up in organs, which may include the heart, and causes them to not work properly. The disease can be fatal and lead to life-threatening organ failure. Carol immediately began chemotherapy, and within a year, she was in remission. But she still had trouble breathing, so she returned to Dr. Rammohan for the MitraClip procedure.

"MitraClip is an alternative to open heart surgery that is approved by the Food and Drug Administration (FDA). El Camino Health was one of the early investigational sites for the device," said Dr. Rammohan. "This treatment option is ideal for patients who are symptomatic where traditional surgery is too risky, and Carol was a good candidate."

During the procedure, Dr. Rammohan inserted a catheter through a vein in Carol's leg to reach her heart and attached a small implanted clip to Carol’s mitral valve to help it close more completely. The procedure is minimally invasive, so patients spend less time in the hospital than they would for open heart surgery.

"I was only here for a day and half for the surgery, but the care was phenomenal. The clinical staff, cleaning staff, I mean, everybody that came into the room was wonderful," she recalled. "It almost makes me cry to think about it. Even the little care package that they leave for you in the room. I love to do art, but had nothing with me, so it was nice to have a pad and pencil, with views of all the beautiful landscaping."

Soon after, Carol began the cardiac rehabilitation program at El Camino Health's Cardiac & Pulmonary Wellness Center. The 12-week program is catered to adults recovering from heart attack, heart failure, and heart surgeries, like Carol.

"Our program is designed to help patients reduce heart disease risk factors, limit the progression of disease, improve physical functioning, and cope with stress more affectively," said Julee Arbuckle, clinical manager at the Cardiac and Pulmonary Wellness Center.

The rehabilitation staff will adjust each patient's personalized exercise program as they make progress on their goals, and design a plan to help patients maintain a healthy lifestyle long term.

"At first, I would workout with them, and go home and have to take a nap for about an hour and a half at first, but now I work out really hard, and go shopping before heading home, and I can carry most of my grocery bags in by myself," said Carol.

It might sound subtle, but for Carol, each individual milestone is life changing.

"Words aren't enough," said Carol. "Thank you. I am so grateful to my care team. They have meant so much to me and my quality of life. I mean, I can breathe again."