Taking Amyloidosis to Heart 

By Holly Prestidge

The woman was a stranger. 

She’d been sitting on a bench on Clay Street with a friend near the entrance to the VCU Health Ambulatory Care Center when Johnny Boatman walked by in the fall of 2024, dragging with him the metal IV pole that he had affectionately nicknamed Mrs. Jones.

This woman must’ve read something on Johnny’s face or seen something in his body language. 

Pain, after all, is something everyone recognizes.   

As Johnny passed her, he said hello. He was just being polite. Just being Johnny.

What came next still gets him choked up.

The woman stood up as he approached her and without warning, she stopped him and gave him a hug. 

She said to him: “’You know, you’re gonna be okay.‘” 

And she was right. 

In the fall of 2022, Johnny was 56 when everything changed for him and his wife, Quan. 

That’s when they first learned that Johnny’s heart was failing him. It would be another year and a half before they truly learned why.

Johnny was a veteran, an athlete, a husband and a father, and of all the things in life he had ever worried about, his heart was never one of them.

That is, until he was told that in order to live, he’d need a new one.

In April 2024, Johnny was diagnosed at VCU Health with hereditary amyloidosis, a disease that affects Black communities at higher rates, yet is often misdiagnosed as diabetes, high blood pressure and other conditions. 

Johnny didn’t know there were signs many years before. The carpal tunnel syndrome. That bicep tear. Trigger finger syndrome. The shortness of breath. 

Neither he nor Quan knew genetics played a role. Johnny was the 12th of 13 children and now their family’s health was forefront in his mind. 

Johnny didn’t know the odds had always been stacked against him, that one in 25 African Americans carries the risk of hereditary amyloidosis.

He didn’t know if he was going to live. 

Johnny would ultimately spend 148 days at VCU Health’s Main Hospital. He received a new heart, as well as a new kidney. 

Looking back now, he can’t believe what his life used to look like.  

Outward appearances portrayed a man who was the epitome of health. 

On the inside, however, Johnny was slowly dying. 

Hiding in Plain Sight 

Amyloidosis occurs when proteins misbehave. 

Proteins play vital roles within the body, transporting nutrients, building and repairing tissues, and regulating organ function. They’re made of amino acids that bind and form structures, but when they become unstable and lose their structure, they create sticky, misshapen clumps. 

Those clumps form amyloid, a pink, shapeless substance that oozes into spaces between cells and destroys healthy tissue, which over time leads to organ failure. 

In the heart, amyloid causes muscles to become thick and stiff, leading to heart failure, valve disease and arrhythmia. 

Eventually, over time, amyloid build up keeps the heart from contracting the way it should. If it goes undetected, the individual can die suddenly – often appearing like a heart attack. 

Keyur Shah, M.D., knows all too well that for many people who die of a supposed heart attack, or heart failure, the real culprit in many cases is amyloidosis. 

As the interim chief of cardiology and David E. Tolman Professor in Heart Failure at the VCU Health Pauley Heart Center, Dr. Shah specializes in advanced heart failure and heart transplantation. Since arriving on the MCV Campus in 2009, he has built an amyloidosis clinic that puts VCU Health squarely among the ranks of the best treatment centers in the world. 

The foundation for what he built at VCU Health started with his genuine interest in a so-called rare disease that he determined is anything but. 

Sitting in his office in West Hospital, Dr. Shah recalled that the first patient he ever saw with hereditary amyloidosis was a member of a major league baseball team.  

Amyloidosis had no treatment options back then. It was considered rare, likely because it was so often misdiagnosed. Its symptoms mimic other conditions and can affect multiple organs simultaneously. That, and given the tools at the time, the only way to confirm the presence of amyloid in the heart was to do an invasive biopsy, something doctors avoided unless they were sure it was warranted.  

When his patient died several months later, the reported cause of death was a heart attack. 

“Not a heart attack,” Dr. Shah said matter-of-factly last month. “That patient died from amyloid, but no one knew what it was or how to describe it.”

Because it was labeled a genetic disorder, the real cause – and the warning it carried – was missed.

“At that time, amyloidosis was perceived to be terminal; nobody knew much about it, and nobody understood there were different types,” Dr. Shah said. 

So much has changed, including a growing awareness of the disease’s prevalence.

In August 2026, more new patients were referred to VCU Health for amyloidosis than general heart failure. That sheer volume has prompted Pauley Heart Center to open amyloidosis clinics two full days per week. The success of the clinic stems from its multidisciplinary team of providers, physicians and surgeons that span cardiology, medical oncology, neurology and nephrology, and organ and stem cell transplantation. 

The vast resources of an academic health system like VCU Health include advanced imaging procedures like cardiac magnetic resonance imaging, cardiac pyrophosphate scans, echocardiograms, electrocardiograms, Holter monitoring and positron emission tomography scans – all tools to help doctors see how a heart moves and beats, so they spot amyloid early. 

And ongoing clinical trials – for which Pauley was among the first in the country several years ago to offer access – continue to expand.  

“We have the ability to offer every component of care for treating amyloidosis patients,” Dr. Shah said. 

That matters considering there are three main types of amyloidosis that affect the heart, each requiring a different approach. 

Light chain amyloidosis, or AL, often referred to as primary amyloidosis, occurs when bone marrow produces too much amyloid protein. 

Age-related amyloidosis, or acquired ATTR, is sometimes called wild-type amyloidosis and stems from a liver protein called transthyretin (TTR) that accumulates in the heart and leads to heart disease in patients over 60.

In Johnny’s case, hereditary amyloidosis, or hereditary ATTR, is caused by a mutation in the TTR gene. The variant most associated with this type in the U.S. is called V122I. It stems from West Africa. 

Most shocking, though, is that according to Dr. Shah, one in 25 Black Americans have this mutation – one in 25. 

It’s a staggering statistic that makes early detection critical. VCU addresses it with a three-pronged approach to education and awareness – medical students and residents, providers and patients.

“I’m trying to convince healthcare providers to look for amyloidosis years before it becomes severe,” Dr. Shah said. “The window for early diagnosis has 10 to 15 years of lead time because the protein starts depositing in other places much earlier than it starts causing symptomatic heart disease.”

That means reaching out beyond cardiologists’ and neurologists’ patients, who are most often seen at the end stage. Rather, he wants to reach primary care providers, geriatricians and orthopaedic surgeons who can spot the earliest clues – symptoms that don’t look cardiac in nature at all.

Dr. Shah has found that hereditary amyloidosis patients often had carpel tunnel syndrome earlier in their lives. They deal with nerve compression issues in the sciatica or lumbar regions, and they’re more likely to have shoulder, knee or hip surgeries or replacements. Another common factor: spontaneous bicep tendon rupture, which results in an oddly large bicep, something doctors call a ‘Pop-Eye’ bicep.

“The picture we’re painting here is that patients with amyloidosis have multiple orthopaedic and neuropathy-type symptoms that present many years before they have problems with their heart,” he said. 

At VCU Health, care spans both ends of the disease. Early intervention can slow or even stop the progression of amyloidosis. For those with the worst-case scenarios, Pauley Heart Center and the VCU Health Hume-Lee Transplant Center stand ready to provide second chances thanks to a robust transplantation program. 

“It’s an exciting time for those patients who previously had no treatments,” Dr. Shah said. “But the onus is on us to identify and diagnose this disease early.” 

‘Just Wrecked’

That fall day in September 2022 was like any other. 

Johnny was working out at his local gym. Minutes into his cardio workout, he noticed some chest pain. He was unusually sweaty. He tried stretching and moving around, but the pain persisted. 

It wasn’t alarming, he said, but it spooked him enough that he took himself to an urgent care facility where he was informed that he was having a heart attack. Within 15 minutes he was in an ambulance on his way to a local hospital. 

Life as he knew it would never be the same.

That initial hospital stay resulted in surgery for a blood clot. But that was just the beginning. For the next 18 months, Johnny was in and out of urgent care centers and hospitals as his heart deteriorated.

He developed atrial fibrillation in 2023, then needed cardiac ablation by January 2024. By April 2024, his local doctors had referred him to Dr. Shah at VCU, where he was officially diagnosed with hereditary amyloidosis. He developed tachycardia. Excess fluid in his abdomen and around his lungs left him barely able to breathe.

By the end of summer 2024, he was in end-stage heart failure. A transplant was his only option. He was added to the national transplant list.

VCU's MCV Campus became his home away from home for more than four months.

All the while, Johnny and Quan were reeling from a word they had never heard of.

“You’re talking about a guy who had been really healthy, thought he had a good heart, and now he’s having to rely on someone else’s heart to live,” Johnny said. “Quan and I were just wrecked.”

Quan remembers a very specific feeling: helplessness. 

“We were just not prepared,” she said. “We had never heard of amyloidosis, and we don’t live under a rock – how could it be so prevalent in the African American community and be so impactful and yet we didn’t know about it?”

In the waning months of 2024, Johnny and Quan celebrated milestones and holidays among the hallways and conference rooms of VCU’s Main Hospital. 

Red velvet cupcakes on their anniversary in September.

Cake and ice cream for Johnny’s birthday in October. 

Thanksgiving turkey and dressing and pies and all the fixin’s were accommodated by hospital staff, who arranged for immediate and extended family – including Quan’s 96-year-old grandfather – to celebrate Thanksgiving together in a hospital conference room.

“They made the hospital feel like home, and those small gestures helped me mentally prepare for what I had to go through,” Johnny said.

“Nurses from other areas of the hospital would stop by and say hello even though they manage many other patients,” he said. “They were going the extra mile, and you can’t teach that. It’s something that’s just inherent, and it’s very special.”  

Christmas came and went. Johnny and Quan wore matching pajamas.

Throughout it all, Johnny was allowed a few hospital privileges. He could take walks outside to pass the time, and he’d sing to himself as he walked. (Johnny grew up loving music and playing trombone through high school.)

One of the songs he’d sing on those walks was the 1970s Billy Paul hit, “Me and Mrs. Jones,” and as his IV pole was his constant companion, it became his Mrs. Jones.   

Then came word of a long-awaited gift: a donor. 

On Dec. 27, Johnny received a new heart. Two days later, a new kidney. After another month in the hospital ensuring his body could accept the new heart, Johnny went home on January 31. 

‘This Is Bigger Than You’

Last month, Johnny stood before nearly 100 second-year medical students at the VCU School of Medicine and told his story. 

The following week, he and Quan – along with Dr. Shah – appeared on a webinar for VCU Massey Comprehensive Cancer Center’s Facts & Faith Fridays, an outreach program that partners with the Central Virginia faith community to get important medical information into communities that need it.

The Boatmans’ priorities now center on making more people aware of amyloidosis.  Johnny and Dr. Shah both serve on the Amyloidosis Speakers Bureau, a national organization that gives amyloidosis patients a platform to share their personal stories with medical students and resident physicians all over the country.  

The Boatmans consider themselves parters in VCU Health’s mission to diagnose and treat amyloidosis. 

“I’ve been surprised how my relationship with VCU has grown and I think that’s because our value systems are the same,” Johnny said. “When we decided we wanted to do outreach, VCU welcomed us with open arms.”

It was Quan, who, during Johnny’s long hospital stay, planted that seed.

As they waited all those months for a donor, she created a Facebook page called “Anyone With a Heart.” It highlighted Johnny’s ordeal and their harrowing journey through it, from the initial surprise and shock to the ongoing medical treatment pre- and post-transplant. 

Part plea, part educational tool. 

Johnny wasn’t keen on social media outreach. He’s never been comfortable in the spotlight. 

“Quan said to me, ‘this is bigger than you – people are dying,’ and when she put it like that, it made sense that this was something I had to do,” Johnny said. “This isn’t just about me; this is about a generation of folks who have this disease and who are dying and don’t even know it.”

During those long months waiting for a heart, Johnny made a deal with God. 

“I’ve always been grounded in my faith,” Johnny said, “and I told the Lord that if this is something you want me to do, open the door and I won’t say no.” 

The Gift of Life

In May of 2025, four months after Johnny left the hospital with two new organs, the Boatmans watched their youngest son graduate from college. 

Quan recalled that friends and family would remark how Johnny’s healthy appearance belied all that he had been through, that he didn’t ‘look’ like a transplant patient. 

They are grateful to VCU Health, to Dr. Shah, and the countless others who kept Johnny alive when he feared the worst.

He’s grateful to Quan for putting her life on hold to be there for him. 

He’s also grateful to an individual he’ll never meet. 

Johnny is living proof that organ donation saves lives. He also knows, however, the stigmas and fears that persist within many Black communities about organ donation and body autonomy.  When he talks to community groups or church congregations, he simply shares his story and lets people decide for themselves.  

“I’ve been given this gift of life because someone pledged their organs,” Johnny said. “It’s humbling and I am so grateful for it.”

“Without organ donation,” he said, “I wouldn’t be here today.”

Johnny is not only alive but thriving – just as that friendly stranger on Clay Street predicted. 

If you wish to support the VCU Health Pauley Heart Center, please contact Hope Elliott, assistant director of development, at 804-628-3607 or elliotth2@vcu.edu.