Twice the Diagnosis, Twice the Passion

Photography by Amy Vest

Kimberly Ketter of Richmond, Virginia, knew something wasn’t right when she was short of breath after climbing stairs at home. An athlete in high school, she considered that maybe at age 40, she needed to start working out. But before she could act on that, she became ill at work as an ER nurse, and an EKG showed her heart rate was abnormally high, a condition called tachycardia.

She took the EKG to her doctor and shared her concern of being short of breath, particularly when climbing stairs. They recommended a stress test, but her shortness of breath kept her from being able to finish it. She knew something was wrong when the technician went to get the doctor, which is not normal protocol. Kim didn’t believe him when he told her she had heart failure (HF). “I made him show me the screen. I’ve seen enough of those to know what heart failure looks like,” she said. “When I saw it, I just started crying because I knew what I was looking at. And my next question was, ‘What’s my EF (ejection fraction)?’ When he told me 20 percent, I lost it because that stinks. Those are pacemaker/defibrillator numbers.”

Immediately she called her identical twin, Shaun Rivers, who also lives in Richmond. She knew that HF has a genetic component and wanted her sister to get checked out. Shaun’s doctors were skeptical that she would have HF, but her tests showed she did. “I looked at that doctor like he was crazy,” she said. “And when he said my EF was 30, I lost it too, just like Kim.”

An intimate support group

While not wanting her twin to be sick, Kim admits that she was relieved at Shaun’s diagnosis: “It meant I didn’t have to face it alone,” she said.

They started medication at the same time, and that was not a happy experience. “The medicines make you feel really tired and fatigued,” Shaun said. “They make you feel worse than you did prior to beginning treatment, until you get used to them. That first year was a journey. It was tough.”

“The best thing about it was that we actually were going through it together,” Kim said. “When one was feeling bad, the other one was usually doing well. It was like having your own little support group.”

HF and other heart disease does not seem to be part of their gene pool. After the twins were diagnosed, their other siblings were evaluated. Neither of them had HF. There is some evidence that their father may have had HF, but he rarely went to the doctor and when he did, he didn’t share the results with his family. “In hindsight, he looked like a heart failure patient,” Kim said. “He would tire very quickly; get really short of breath. He was overweight, and his legs would swell. So, he may have had some heart failure, but we just were not privy to that information.”

Stages of grief

The twins say the stages of grief were a helpful paradigm for coming to acceptance of their diagnosis. “The first thing I felt was complete denial, ‘Surely, it’s not me. You got the wrong patient,’” Shaun said. “Then you go through your anger because you’re mad at everybody; then depression; then bargaining: ‘Oh Lord, I won’t eat beef jerky anymore if you just take the heart failure away.’” It took about a year after their diagnoses to reach acceptance. “I said to myself, ‘Shaun, get over yourself. You have heart failure. What are we going to do about it? I choose to live and not die, so let’s do what we have to do.’”

Photography by amy vest

Taking on the Cause

Shaun and Kim followed the plans established by their doctors and raised their EF to 50 percent. They also took on the cause of HF in their community. They co-lead the Caring Heart Nursing Ministry at their church, St. Paul’s Baptist Church in Richmond. “It is a 13,000-member, multi-site church, and we have about 25 to 30 medical personnel and volunteers under our watch,” Kim said. Their team does a lot of blood pressure screenings on Sundays and keeps track of people’s numbers for them. “A lot of people come just for their blood pressure.”

Their program runs the whole gamut of health care. “We focus on what we call ‘health maintenance,’” Shaun said. “But the big things we see a lot of in our church are heart-and diabetes-related issues. Those concerns are huge so our focus is primarily there. The ministry also helps with medical emergencies on the weekends and at special events.”

One of their battles was trying to get the culinary ministry, which does a buffet every Sunday, to change their food choices to healthier fare. It’s clear in their telling of the story that it was not an easy sell: “At least now there isn’t fried chicken every week, and we did convince them to take the salt shakers off the tables,” Kim said.

Dethroning the Slim Jim® Queen

The sisters know from personal experience the difficulty of changing diet and getting the salt out. “I was the Slim Jim® queen when I was nursing at the hospital,” Shaun said. “You’re always on the go, and you just grab what’s quick. You don’t read the nutrition panel. Lowering my salt intake was hard.”

The biggest dietary change for Kim was limiting fast food. “It was very hard. It’s still very hard,” she said. “Some days we’ll just run, run, run and we get 30 minutes to eat, so you want to go grab something quick. But we found that most fast food places have a lot of healthier options, so we get the salad instead of the sandwich. We just have to think a little bit more about what we’re going to eat. That was a big challenge for us.”

A new mission

Since being diagnosed with HF, the twins have left hospital nursing and opened a diabetes wellness center in Petersburg, Virginia. Kim, as a nurse practitioner, and Shaun, as a diabetes clinical nurse specialist, see this, too, as work that they are called by their faith to do. “We’re very spiritual individuals,” Shaun said. “In the classes we teach, we believe and propose that while living, it is impossible to separate your physical being from your mind and spirit, they are parts of the same whole.”

“I really do believe that God has the power to heal, but I tell them God also imparts wisdom,” Kim said. “He puts in place people and options that help us to make wise decisions. We start all of our programs in the faith-based community with the understanding that our bodies are temples to be honored and well maintained.”

Kim shares one metaphor that is particularly impactful: Imagine you rent an apartment. You don’t own the apartment, the property has been paid for with a price. You are allowed to reside there for a period of time until the lease is up. Your only job is to take care of the apartment, to make sure it’s clean, free of clutter, etc. “Then I end with this question: If the property manager who owns your temple were to come down right now and do an assessment, would your temple pass inspection?” Kim said. “We usually get a very quiet room at that point. Then we say, ‘Okay, now, let’s get started talking about the things that you can do better, that we can all do better.’”

What HF looks like

Photography by Amy Vest

When they were first diagnosed, part of their disbelief at the diagnosis was that they didn’t look like their picture of HF: “We were young African-American women in the prime of our lives, and when you look at commercials for the heart failure drugs, we don’t look like those portrayed. We just don’t look like the folk in those commercials. I think that sends an unclear message … that heart failure only happens to older people. There’s still a lot of teaching to do,” Kim said.

Kim and Shaun believe that there is purpose in their pain. Educating communities on heart health is one of their priorities, and they use their professional positions to reach the public and promote health and wellness. Since their diagnosis, other members of their community have been diagnosed, and they find themselves mentoring them — alerting them to things like timing when they take their Lasix® so they can be near a bathroom and making clear that the medication, while initially unpleasant, is necessary if they want to improve.

In addition, both have a new vigilance about HF symptoms. “If a younger, female patient comes to my clinic and says she’s tired and wants a fluid pill because her legs have been swollen, I automatically start asking questions about heart failure,” Kim said. “I’ve learned that I must consider this diagnosis as a possibility, even with vague symptoms. I may not have been as aggressive with testing for it, had I not been diagnosed myself.”

To other HF patients they share sage advice: “The first thing I say is don’t stop living,” Shaun said. “Take care of yourself. Keep your doctor’s appointments. Take your medications. And exercise.” To which Kim added, “Have fun, do things that you enjoy. For example, Shaun and I enjoy going to see the R&B group New Edition in concert and dancing to their songs. It keeps us young and in those moments, we don’t think about having heart failure!” In addition, Kim recommends getting connected with someone or a group for help. “There are support groups out there, and the American Heart Association has a wonderful online community. The Rise Above Heart Failure community is one where people with heart failure can chime in and converse with people in chat rooms about their diagnosis, ask questions or just get advice. Certainly, they don’t give medical advice in the chat rooms, but it’s important to speak to someone who’s been there and done that. Don’t try and do this by yourself.”

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.

If you or someone you care for has been diagnosed with HF, be sure to see our award-winning four-part Heart Failure series.

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