Charlotte Haffner is the first Vanderbilt patient to receive both a heart transplant and a stem cell transplant, she has certainly learned that life is all about the journey.
In 2008 Charlotte 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. Charlotte 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. Amyloidosis is typically treated the same way as cancer: chemotherapy and a stem cell transplant. Because the disease had taken up residence in her 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 Charlotte 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.
Charlotte 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.
“All of my doctors exude confidence. I never had a worry. This is going to work. I know it is,” she 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.”
Since her diagnosis eleven years ago, Charlotte has dedicated her life to promoting amyloidosis awareness and support to those affected by this disease. She volunteers on behalf of the Amyloidosis Foundation at their awareness booth at medical conferences, leads the foundation support group at Vanderbilt University Medical Center and has made numerous press appearances to generate awareness of amyloidosis. She is an excellent community builder, and has been involved in many fundraisers, including Co-Chairman of the 2015 Nashville Gala. Charlotte has served as a member of the Board of Directors of the Amyloidosis Foundation since 2014. Her support group meets monthly in The Vanderbilt Clinic.
“I decided to start the amyloidosis support group because I had no one to turn to when I went through my heart and stem cell transplants. Having a rare disease is difficult, but having no one to talk to about what to expect makes it even harder,” Charlotte said. “The support group is very important to me. It gives me a chance to give back, to share my experiences and maybe help smooth the way for someone who is confused and afraid.”
Vanderbilt formally established Vanderbilt Amyloid Multidisciplinary Program (VAMP) in 2011 to advance the understanding, treatment and research of amyloidosis, joining Boston University and the Mayo Clinic as one of the few places to offer a multidisciplinary approach to the often fatal disease.
Aside from streamlining clinical management of these patients, VAMP is dedicated to improving diagnosis, disease monitoring and treatment through research, including studies of potential biomarkers, noninvasive imaging and drug trials.
Charlotte now says, “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.”