Editor’s Note: This patient perspective originally appeared in the summer 2022 issue of NEXT magazine in conjunction with the story on amyloidosis, "Out of the Dark".
Tom Cardwell’s passion is serving his community. He and his wife TJ retired to Williamsburg from the Washington, D.C., area in 2001, and since then he’s enjoyed serving on various environmental, community and other nonprofit boards.
But in 2017, he found that he no longer had the energy to participate fully and effectively.
“I just felt worn out all of the time,” he said. “It was like I had to drag myself to meetings and act like I was feeling good.”
After many different tests over about six months, an MRI finally revealed a spot on Cardwell’s heart that was indicative of amyloidosis.
“Prior to increased access to genetic testing and application of novel nuclear medicine technologies, the disease was only identified if patients agreed to undergo an invasive procedure to obtain a tissue biopsy of the heart,” said amyloidosis expert Keyur Shah, M.D. “Now, patients can be diagnosed with blood samples and imaging, which has led to a marked increase in diagnosis and awareness for the disease.”
Cardwell soon learned he was in the right place to battle his amyloidosis.
“My cardiologist Dr. Ellenbogen said he had the expert on his staff for amyloidosis, so they set me up for an appointment with Dr. Shah,” Cardwell said.
Dr. Shah did a few more tests to confirm the diagnosis, then began treatment, which included medication for Cardwell’s TTR wild-type amyloidosis.
“After so many tests, a diagnosis provides confidence,” Cardwell said. “There’s a fear of the unknown, but I can deal with what I know. I may not like what I know, but at least I can deal with it. And I now have a doctor who can help me through it. We can monitor it, and it gives me confidence that somebody is looking out for my wellbeing.”
Cardwell’s treatment at VCU Health has included tafamidis, a breakthrough treatment which is a molecule that stabilizes the TTR protein. This is the first-ever FDA-approved treatment for this disease. Although it is not a cure, it prevents further deposition of the deadly amyloid fibrils.
He will visit VCU Health for amyloidosis at least quarterly, with annual echocardiograms and monitored exercise. Providers analyze lab results and watch how the disease may or may not change over time, using their observations to determine how well Cardwell is responding to treatment.
Observations from both care providers and Cardwell’s personal experience show treatment has slowed progression of the disease. Cardwell has his energy back and has returned to doing what he loves, and that’s serving to make communities in central and eastern Virginia better places to live.