For many years, Frank dealt with extensive and increasingly debilitating heart problems, including congestive heart failure, atrial fibrillation, and valve defects. Despite these health issues, Frank took an active role in Mardi Gras season. Elected as the King for one of New Orleans' best-known Krewes (the parades and balls during Mardi Gras are organized by these private social organizations), he attended the Mardi Gras ball and parade, wearing an elaborate traditional costume that included a 40-pound model train.
After the rush of Mardi Gras, Frank’s local doctor updated his medications to help address his increasingly debilitating symptoms. After taking the new medications, Frank’s condition worsened and he soon found himself in the hospital. After a week in the hospital, he was discharged—against his wishes—with some less-than-satisfying excuses: “Nothing we can do,” the doctors said and “surgery isn’t an option—don’t let anyone cut you open.” Frank and his wife, Karen, returned home frustrated and without options.
In early April, their friend Isabelle was looking for heart health information online and saw a notice for an upcoming health chat hosted by a Cleveland Clinic heart expert, Dr. Randall Starling. Frank and Karen, went to Isabelle’s house to attend the chat together. They asked, “Can congestive heart failure be reversed?” Dr. Starling’s response was hopeful. Yes, he said, it could be, sometimes, and it was possible that Cleveland Clinic could help Frank. Within hours, Frank and Karen logged on to the Cleveland Clinic website and scheduled an appointment.
In preparation for their appointment, which was booked less than two weeks away, the couple contacted another friend who had been treated at Cleveland Clinic. The friend recommended accommodations at the Cleveland Clinic Guest House, which is very near the Cardiac Center. They arrived at the guest house two days before their appointment so they would have time to settle in. Frank needed to rest after travel. “I had gotten to the point where I couldn’t toss a salad without getting winded,” Frank admits. “I felt like I was going to die.”
Frank did not die, but he did have an acute atrial fibrillation attack the night before his scheduled appointment. He was rushed to the Cleveland Clinic Emergency Room where he was stabilized. His medical team, Dr. Karen James, Dr. Robert Hobbs, and Dr. Gonzalo Gonzalez-Stawinski evaluated his condition and determined that a good surgical outcome was possible. A number of procedures were on the table at that point, including mitral valve repair, aortic valve replacement, insertion of a defibrillation lead, and the Maze procedure for control of atrial fibrillation. Frank also learned that his chance of needing an LVAD (left ventricular assist device) was 50/50.
Frank objected to the LVAD. He thought it would be cumbersome and too hard to manage, but he decided to go ahead with the surgery knowing the odds. On May 4, Dr. Gonzalez-Stawinski started Frank’s operation and soon determined that, in his opinion, an LVAD was needed. Karen gave her permission and later that day Frank was recovering in cardiac intensive care. “During the hospital recovery period, the staff—nurses, therapists, social workers, and doctors—got to know us and provided the training and support we needed every step of the way,” Karen says.
Frank and Karen lost their home when Hurricane Katrina swept through New Orleans, and money is a persistent challenge. The cost of Frank’s surgery exceeded the annual cap on his labor-union health insurance plan by more than $300,000, but the couple has no regrets. “We would have done the procedure at any cost,” they say. They are pleased with the continued help they are getting from Cleveland Clinic. “A social worker coordinated a variety of grants and financial aid applications for us,” Karen says. “They do not press us for more than we can pay.”
Frank goes back to Cleveland Clinic every six months for a checkup and routine LVAD monitoring and adjustments. A former martial arts champion, Frank has returned to teaching karate, and he hopes to increase his aerobic activities in the future. “I am more comfortable with the LVAD than I thought I would be,” he says, “and the maintenance is easier.” Karen agrees and says, “Frank received the best care in world and feels more like himself than he has in years. Truly, I wouldn’t have my husband without Cleveland Clinic.”
Last updated on 29 November 2015
Before Leaving the Hospital: Get All the Paperwork
Impatient to be gone, and often suffering the woozy side effects of surgery and post-operative pharmaceuticals, patients too often find themselves back at home later, missing important documents that could have more easily been obtained on site. So before you hightail it out of your hospital or clinic, be sure that you have all of your important documents.
Generally, larger hospitals provide complete medical documentation as part of the standard exit procedure. However, some smaller clinics may rely more on verbal instructions, and they are less likely to build and maintain a dossier on your case.