As an avid cycler, Kathy was used to having irregular heartbeats. Pre-diagnosis, during a pre-surgery EKG, her team went quiet. “They asked me if I felt the PVCs (premature ventricular contractions) I was having,” she says. “I said, I guess so – I’d didn’t realize they were PVC’s. I had just learned to live with it. Another time, I had a 20% PVC burden during a stressful period at work. I feel very lucky that I didn’t have a Cardiac Arrest before my diagnosis.”
Kathy is a Type 1 diabetic, and her endocrinologist kept asking her to take a statin. Rather than a statin, the cardiologist she was referred to did a VO2-max test where her heart rate spiked and blood pressure went through the roof. She was sent for an MRI, where fibrosis scar tissue was discovered on her heart. That along with her inverted t-waves and enlarged right ventricle pointed to ARVC. Genetic testing confirmed her PKP2-positive ARVC in 2019, and she had an ICD implanted and was put on flecainide and metoprolol.
The adjustment period was difficult for Kathy. “I told my endocrinologist, these drugs are terrible – I have no energy and can’t get off the couch,” she says. “She looked at me and said, Kathy, I think you’re suffering from depression. This was a huge alteration to my life. I don’t always think the mental health element of ARVC is at the forefront of the discussion about this condition, but it’s definitely a huge part of the diagnosis.”
Kathy says that what helped her the most with her diagnosis was her dog – Lola.
“Before my diagnosis, I lived and breathed cycling,” she says, “I didn’t have time for a dog. After diagnosis, I decided to get Lola, a Lagotto Romagnolo [Italian truffle dog].”
A woman who lived in Kathy’s area told Kathy that Lagotto Romagnolo is a smart, athletic, working breed – who love to keep their brains busy. Kathy started doing nosework and truffle hunting with Lola.
“Truffle hunting was a great thing to do – it’s out in the woods, you’re walking but it’s not super strenuous exercise,” she says. They started doing nosework competitions and in 2022, she and Lola competed in a truffle hunting competition. She dabbled in agility with Lola – leading her around a course where Lola must jump, run through tunnels, and weave across a changing set of obstacles.
“The more I did agility, the more I loved it,” she says. “It relies very much on both you and your dog as a team. There’s a lot of complicated footwork and movements, you have to memorize the course, and it’s challenging for both of us.”
Lola’s also participated in other dog sports including Barnhunt, where she must identify rats that have been hidden throughout bales of hay. Misha’s not a fan of Barnhunt, though – she’s afraid of the smell of rats (like many of us!).
For those who have just been diagnosed, Kathy says that looking back, she wishes she hadn’t been so terrified of the diagnosis. “When you’re first diagnosed, your whole lifestyle changes, and you can even lose friends because of that,” she says. “It’s a scary condition when you read about it. But I want others to know not to panic. You can continue to live a very full and fun life with this condition.”