RICHMOND, Va. (WRIC) — A former national guardsman is spreading the word about a rare disease and the importance of organ donation.
Johnny Boatman was healthy his whole life — but everything changed after being diagnosed with amyloidosis. The Fredericksburg man has been in and out of hospitals and is in urgent need of a new heart.
Johnny was skeptical about sharing his story at first because he didn’t want to make this about him — but, together, he and his wife, a Richmond native, agreed they want to do everything they can to raise awareness and save lives along the way.
“This isn’t about me,” Johnny said. “It’s about helping others, as well.”
8News spoke with the couple, the two flagship members of “Team Boatman,” on Monday, Oct. 14.
A Bronze Star recipient and former D1 athlete, Johnny and his wife Quan have been at VCU Health for thirty-nine days. They’re waiting for a special delivery — or, in Quan’s words, a miracle.
“Lots of days, I hear the medevac come and land on the hospital roof,” Quan said. “And, a lot of times, I just pray that that moment is where it will be a heart and kidney for Johnny.”
Johnny’s life changed back in 2022. He was working out at the gym and had a sudden pain in his chest.
“It felt like I was having indigestion and it wouldn’t go away,” Johnny told 8News.
He rushed to urgent care, where doctors found he’d had a heart attack.
Eventually, with the help of an array of experts — including VCU Health’s Dr. Keyur Shah — the Boatmans discovered Johnny had a condition called hereditary ATTR amyloidosis. It’s essentially a buildup of proteins that prevents organs from functioning properly.
“It is actually more prevalent than previously thought,” Dr. Shah explained.
Symptoms can be as seemingly simple as shortness of breath, fatigue or swelling. Amyloidosis can be hereditary, like in Johnny’s case, or it can develop with age.
Dr. Shah said that 1 in 4 people who appear to die of natural causes are actually found to have died of amyloid in the heart.
He added that 1 in 20 Black Americans carries a gene mutation that can cause this disease. VCU Health has additional information about the disease and resources for help online.
Now, together at VCU Health, Team Boatman has celebrated their 11th anniversary and, with the help of Boatman’s friends, launched an awareness campaign called “Anyone with a Heart.”
“I can’t emphasize enough the importance of donation and getting the knowledge, because knowledge is power,” Quan said. “By the time I did learn of it, it was almost virtually too late in order to be proactive or to prevent some of the damage that had already been caused.”
Boatman is waiting at VCU Health until a new heart — or miracle — comes his way. In the meantime, he’s pouring his own heart into the cause allowing support to shine through.
“Whenever the doctors come in to check on him and ask him how he’s doing or how he’s feeling, his response is, ‘We’re doing okay,'” Quan said. “I’m like, ‘In that instance, it’s you!’ I think that’s his way of saying, ‘We really are in this together.”
The Boatmans thanked VCU Health, the hospital staff and, of course, Dr. Shah for all of their help navigating this new path.
If you are interested in learning more about organ donation and the Boatmans’ “Anyone with a Heart” campaign, check it out on Facebook or Instagram. You can also contact the campaign by email at anyonewithaheart@gmail.com. Johnny’s loved ones say you can help by sharing his story on social media and use the hashtag #AnyoneWithaHeart. They ask anyone facing difficult decisions to consider a directed heart donation.
For additional information about VCU Health’s organ transplant department, visit its website.