This too will pass: Meet @boatsforlife

JOHN: What brought you to Mayo Clinic Connect? 

@boatsforlife: When I was diagnosed with hypertrophic obstructive cardiomyopathy (HOCM), the first thing my cardiologist suggested was to look at Mayo Clinic Connect. 

JOHN: What motivates you to take part in the community?

@boatsforlife: The second thing my cardiologist suggested was to consider Camzyos (mavacamten) which, at that time, had only been approved in Canada for about 6 months. There were active discussions on Mayo Clinic Connect about HOCM and Camzyos, with loads of people chiming in about their experiences, their fears, their successes and their failures.

JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@boatsforlife: Feeling a bit out of my league, asking myself questions like: What is HOCM? What is Camzyos? What are the other treatment options? I observed a community that was open to people with those same fears and uncertainties. I was also really glad to see the repeated mantra "We aren't doctors. We can't diagnose you. Listen to your physicians, but come share our experiences." I had been worried that this would be a bunch of wannabe-doctors giving medical advice. That wasn't the case.

JOHN: What support groups do you participate in?

@boatsforlife: I participate in the discussions regarding HOCM, and Camzyos in the Hypertrophic Cardiomyopathy (HCM) support group. I also lurk a little in the conversations about the newer drug Myqorzo (aficamten) just in case Camzyos quits working.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@boatsforlife: I can't remember exactly what the specific discussion was about but I had responded to someone giving what I hoped would be something empathetic and encouraging but I'm an engineer so I know there may be "limits" to my interpersonal skills. I was staggered when I started getting "likes" and "hugs" and "helpfuls" to that response. 

Special shout-out to Debra, Volunteer Mentor (@karukgirl). There's loads of amazing people on Mayo Clinic Connect but she's the most amazingly amazing! She's always the first one there to welcome a newcomer or to offer a sympathetic ear or to provide helpful sources of information. She should get a raise!

JOHN: What surprised you the most about Mayo Clinic Connect?

@boatsforlife: I understand why I frequented Mayo Clinic Connect in the early part of my journey. I had no idea what was going on and this was a place to find answers and to find community. 

I think what continues to surprise me is the fact that I keep coming back to check in, even now that I am comfortable with my diagnosis, comfortable with the medication and comfortable with the options that might or might not be present when life throws me another curve ball. So why do I keep returning now? Maybe instead of coming to the community to get something, I feel like maybe I can come to Mayo Clinic Connect to give something? Ooo — pretty deep for an engineer. 🙂

JOHN: What energizes you, or how do you find balance in your life?

@boatsforlife: I had gone through 16 or 17 years of undiagnosed HOCM, progressively getting more and more incapacitated to the point where I couldn't climb more than a few stairs at a time. I even had to retire early because of it. I was one of the lucky ones for whom Camzyos completely turned things around.

I've always been the poster child for "Lazy", but suddenly being able to do things again has been a huge motivator to actually get out and do something. No marathons but lots of walks, biking, sailing, kayaking. I missed being able to go skiing with my kids because of HOCM, and now that I have the world's most beautiful granddaughter, I don't want to miss anything with her!

JOHN: Tell us about your favorite pastime or activity.

@boatsforlife: I love camping, kayaking and small-boat sailing. But just as much, I love building those small boats. I’ve built two canoes, two kayaks, two sailing skiffs, one rowing skiff and for the birth of my first child, a 4-foot long cradle. It’s an exact miniature replica of a Bahamian Abaco dinghy. It was by far the most difficult build. 

JOHN: Do you have a favorite quote, life motto or personal mantra?

@boatsforlife: This too will pass. It may pass like a kidney stone, but it will pass.

JOHN: What do you love about where you live or vacation?

@boatsforlife: My favourite way to vacation is to go camping with my wonderful wife. When the wind is light, we poke around a shoreline in the kayaks. If the wind picks up a bit, she sits on the beach with a good book while I try to squeeze that extra little bit of speed out of the sail. And if the wind picks up too much for that, the e-bikes take us on grand adventures. There's so much of my country I have yet to discover — waterfalls, wildlife, forest trails, salmon spawning runs. That’s what life is about!

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