Heart patient Charlotte Haffner works out at the Dayani Center. (photo by Mary Donaldson)
Heart Walk has special meaning for patient
Charlotte Haffner won't rush to finish the three-mile Heart Walk on Sept. 26. After being the first Vanderbilt patient to receive both a heart transplant and a stem cell transplant, she's learned that life is all about the journey.
Two years ago, Haffner was a healthy, active 55-year-old who loved the outdoors, particularly taking care of her horses. Then, one day she started to feel different. She was fatigued, retaining fluid, experiencing shortness of breath.
Routine diagnostic testing by her physicians did not reveal the cause of her heart failure. As the months dragged on, her health deteriorated. She sat on a hillside on her farm one evening and looked up at the star-filled sky and prayed for guidance. She sensed she was dying.
The next day she received a letter stating her doctor was relocating and she would have to find a new one. A friend encouraged her to call Vanderbilt Heart & Vascular Institute and gave her the name of cardiologist Joseph Fredi, M.D. Fredi had a good idea what was wrong with Haffner after her first visit in July 2008.
Several tests and a biopsy later, he delivered the bad news to her as she lay in the recovery room.
Haffner has primary AL amyloidosis, a plasma cell disorder that originates in the bone marrow. The disease results when amyloid protein builds up in one or more organs, causing them to malfunction. It is a rare disease with only 1,200 to 3,200 new cases reported each year in the United States.
Amyloidosis is typically treated the same way as cancer: chemotherapy and a stem cell transplant. Because the disease had taken up residence in Haffner's heart, she was in heart failure.
“I asked Dr. Fredi if it was fatal, and he held back for a minute, and he said, 'I'm afraid it could be,'” she recalled. “I said to him, 'Well, it won't be this time.'”
Before Haffner could undergo treatment, she needed a heart transplant.
She met with a team of Vanderbilt cardiologists, surgeons and hematologists who jointly agreed to take her case despite the high risks associated with it.
“Primary AL amyloidosis is a rare and deadly disease. It is rare to get it, and rarer to survive long enough to get a heart transplant with such advanced heart involvement,” said Doug Sawyer, M.D., chief of the Division of Cardiovascular Medicine and one of Haffner's physicians. “It is also rare to be in a part of the country where a medical center will take on this challenge.”
Haffner had a heart transplant on Nov. 29, 2008. She cleared the first hurdle in her journey back to good health. It would pale in comparison to the second.
After recovering at home, she re-entered Vanderbilt University Hospital in February and had her stem cells harvested, which means that all of the blood was taken out of her body, the stem cells removed, and the blood replaced.
She was then admitted to the isolation unit on 11 North where she stayed for 23 days. She underwent chemotherapy to kill the plasma cells in her bone marrow that were the source of the protein causing the amyloidosis, which still affected her esophagus, lungs and intestines.
“My doctors told me they were going to give me enough chemo that it could kill me,” she said. “They were very upfront with me. It was a risk for everybody.”
She became violently ill from the effects of the powerful drugs. Her hair fell out. All the while, she never gave up hope and would not tolerate anything but optimism from her family, friends or caregivers.
“All of my doctors exude confidence. I never had a worry. This is going to work. I know it is,” Haffner said. “I could not have gotten through this without Drs. Fredi, Sawyer, Mark Wigger, Tom Di Salvo and Adetola Kassim. Not only are they brilliant physicians, they are also compassionate men of great character.”
Haffner will participate in this year's Heart Walk as a member of “The Heartbeats,” a team comprised of VHVI physicians, nurses and patients. She will cross the finish line nearly two years after her health problems began.
“I am not in such a hurry anymore. Things aren't as urgent as they used to be,” she said. “You've got to stop and smell the roses.”
The American Heart Association Heart Walk will be held on Saturday, Sept. 26, from 10 a.m. to noon. Festivities begin at 8 a.m. on the Sports Club Field at the corner of 25th Avenue and Children's Way. For more information, please visit www.nashvilleheartwalk.org.