Cancer and Clinical Services Patient Stories
All Patient StoriesLloyd Smith – Amyloidosis Patient Story
A team always on-point
As is sometimes true with our health, one challenge often follows another.
In late 2019, Lloyd Smith was suffering with symptoms that were later thought to be COVID-19, although he never had a conclusive test. At the time, the world was still struggling to understand the virus, and Lloyd avoided health care settings as the media was recommending.
Months later, he was struggling to even make the short walk to the mailbox and back. “I went from being healthy, normal and active to being a zombie,” he says. “My breathing was so shallow, and I was gasping for air. Because I lived alone, every day was a struggle.”
Knowing he needed answers, Lloyd began researching his options. “Even before I had my appointment at The James, I knew I had found five-star doctors because I did my homework, and I was also told by a friend that that would be my best option for treatment.”
What he couldn’t yet know was the eventual benefit of having so many different specialists at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (The James) — experts who could collaborate and coordinate his treatments as new health concerns surfaced.
After an initial battery of tests, Lloyd was diagnosed with hereditary or familial ATTR amyloidosis, which occurs when a protein called transthyretin, or TTR, changes in shape and forms into clumps that are deposited into different organs and/or the peripheral nervous system, which can interrupt their function. As with all forms of amyloidosis, symptoms can vary, but the most frequently affected areas include the heart, kidneys, liver, spleen, nervous system and digestive tract.
Fortunately, there’s a hematologist at The James who specializes in plasma cell disorders like amyloidosis, Naresh Bumma, MD, and he helped Lloyd gain early access to a new FDA-approved treatment for the disease. The James team also helped Lloyd secure financial assistance to reduce the cost of the expensive drug each month.
In Lloyd’s case, his heart is the organ most impacted by his amyloidosis. Although he was hospitalized following a dramatic drop in his oxygen levels, a pacemaker, many months of physical therapy to improve his strength, breathing and endurance, and regular appointments with his cardiologist, Rami Kawash, MD, have led to a dramatic improvement. “My life is so much better than it was,” he says. “I can now do 95% of what I could do before I got sick, and I’m happy to be able to get out again.”
He’s also recently had surgery for carpal tunnel, another complication of his disease. “Whatever my issue, I’ve been able to find the professionals I need at Ohio State,” Lloyd says.
Through it all, his team of doctors have a group meeting with Lloyd once each year to discuss his health, consider new treatments and address his concerns. Although he no longer needs frequent appointments with Dr. Bumma, he does have regular cardiology assessments and ongoing appointments with Dr. Kawash to monitor his heart health.
“Every one of my doctors has been helpful, friendly, welcoming and determined,” Lloyd says. “As a bit of a pioneer myself — I was also as one of the few black students first bused to all-white schools back in the ’60s — I know they’re at the front of their field. We talk about a lot of things together, and it’s clear that they’ve studied the issues and know the results of treatments they recommend. They’re definitely among the most experienced teams in the country in relation to my disease, and I’d 100% recommend them.”