Kelly McCulloch is a music teacher, but she says the most beautiful sound she's ever heard is her own heartbeat – once she actually had one. Before her aortic valve replacement, McCulloch's heart didn't exactly beat. It sloshed.
McCulloch was born with a partial blockage of her aortic valve. She always knew she'd need surgery one day. It was just a question of when. When she was four, a procedure to open the valve helped delay surgery but also tore the valve causing it to leak.
"The blood just sloshed back and forth, so I didn't have a real heartbeat. It sounded like an ocean wave," McCulloch said.
At 29, McCulloch could wait no longer to have the valve replaced, but she was afraid. So she did what many people do: she turned to social media for answers and support. She learned everything she could about the procedure, the risks, recovery and drug interactions, and she built a support community with people she now calls friends.
McCulloch's story may provide insight into how health care facilities will meet new federal requirements to communicate health information more clearly while reducing hospital readmissions and achieving better patient outcomes. Low health literacy is associated with greater risk of illness and death, more ER visits and more hospital admissions and readmissions.
"I found my job using social media, I found my fiancée using social media, so it just seemed second nature to use it for my health," McCulloch said.
McCulloch joined support groups, contributed to discussion boards and searched YouTube using the terms "aortic valve replacement." Watching every video that the search returned, McCulloch liked Nucleus Medical Media's 3-D animation best. She watched the video again and again, becoming more familiar with both the procedure and her own anatomy.
"The animation isolates the area where the procedure will be performed, like a diagram in a poster, but it's moving, so you can follow the procedure and actually understand what's happening," she said. "The narration was straightforward but scientific. It wasn't dumbed down, but it wasn't so technical that I couldn't understand it."
The 3-D animation helped change McCulloch's attitude from what she considered irrational fear to scientific logic.
"Watching it forced me to look at it from a scientific perspective. I saw it as something that needs to be done. It was for my health, and there's a high success rate. Even though it's a big deal to me, surgeons do this procedure every day," McCulloch said.
She liked the 3-D animation more than videos of actual surgeries.
"There are videos where they cut open an actual person, but I didn't like those as much because they would point to something and say, ‘You can see that the left ventricle is enlarged,' but it's hard to really see it from that perspective."
Many health care facilities are already taking advantage of the clear communication that 3-D animations provide.
"We were looking to illustrate exactly what happens during certain procedures, to show our viewers what happens, not just tell them," said Brian Mulligan, director of integrated marketing at North Shore Long Island Jewish Medical Center, which licenses Nucleus animations for use on their YouTube channel.
Patients associate the expertise of the animations with the institutions that post them on their websites and social media pages.
"We use our videos to educate and show our expertise. Education makes patients better informed," Mulligan said. "When we are the provider of that information, it reflects positively on us."
North Shore LIJ doesn't just want to provide information, but do so in a compelling way.
"The use of quality animation helps grab and hold the viewer's attention by showing them what is involved in an interesting, engaging way," Mulligan said. Compelling media draws viewers and builds communities.
Repeatedly visiting the 3-D animation on YouTube, McCulloch posted comments underneath it and replied to others. To a 15-year-old who was preparing for a fourth heart surgery, McCulloch wrote, "Much love to you, friend. Hugs."
"I commented on those YouTube posts because I figured if anybody felt anywhere near how I felt, they were probably freaking out, and I didn't want them to have to go through that," she explained.
In other comments, McCulloch shared her own story.
"Sharing my story put my mind at ease. And participating in discussions and reading other people's stories helps," she said.
"Social media helps me be pro-active and an advocate for my own health, and it helps me understand that I'm not the only person who's had to deal with this. If there are answers for them, there are going to be answers for me. I really do believe in the power of social media to help people from day to day."