It’s a family affair

Hey Warriors,

Living with a Left Ventricular Assist Device (LVAD) is no small thing. It’s a literal lifeline, a mechanical beat helping carry someone through heart failure, and yeah, it changes everything. But here’s the part people don’t always see: it’s not just one person’s journey.

When someone gets an LVAD, the whole family gets a new job description. Suddenly, everyone’s got roles: caregiver, charger checker, bandage fetcher, emotional support hype crew, and you all learn to dance to this new beat together. It’s one part medical, one part emotional, and a whole lot of figuring-it-out-as-you-go.

This post is for the families, the caregivers, the kids, the spouses, the “ride-or-dies,” doing life alongside someone with an LVAD or any chronic illness. You’re not just background characters. You’re co-pilots. And your story matters too.

An LVAD is a mechanical pump that helps a weak heart keep up with what the body needs. Sometimes it’s a bridge to transplant, sometimes it’s a long-term ride. Either way, it’s a game-changer. Families often become instant students, learning how it works, how to clean it, and how to keep their loved one alive and charged (literally). You Google words you never thought you’d Google. You become an expert at remembering battery change schedules while also remembering whose turn it is to do the dishes. And listen, no one expects you to be perfect. You just have to be present.

When a doctor says, “It’s time for an LVAD,” your whole world shifts. Fear. Shock. Question overload. The kids ask, “Will Mom still be able to cook dinner?” (Spoiler: Yes. But now dinner comes with a background hum.) One woman told me, “When they told us about the LVAD, it felt like I forgot how to breathe. All I could think was, ‘Is he going to make it?’” If that’s you, you’re not alone. None of us feels “ready” for something like this. But we find our way, one beep, one appointment, one laugh-when-you-want-to-cry moment at a time.

The learning curve is steep, but teamwork makes it less scary. You go to appointments like you’re in a group project. You take notes like it’s finals week. You watch YouTube videos you never thought you’d watch. Bring a notebook (or use your phone) to jot down key info. It helps everyone stay on the same page and feel a little more in control. And don’t sleep on support groups, online or in person. Sometimes just hearing, “Oh yeah, we went through that too,” can be the lifeline you didn’t know you needed.

Life changes after an LVAD, no sugarcoating it. Meal planning looks different. Outings require more prep. Spontaneity? It still exists, but now it comes with a checklist (batteries, spare controller, snacks, because obviously). In our house, cooking became a group activity. We turned “doctor’s orders” into family bonding, experimenting with heart-healthy meals, dancing in the kitchen, and occasionally starting food fights. The little ones? They’re surprisingly resilient. They learn early what “sterile” means, how to untangle wires without pulling them, and how to say, “Mom, you’re beeping again,” with just the right amount of sass.

This is the part we don’t post on Instagram enough. The fear. The late-night Googling. The anxiety that creeps in. The caregiver burnout that sneaks up on you. Give yourself permission to feel everything, the love, the fear, the frustration, the gratitude. You’re allowed to cry in the shower and then crack a joke five minutes later. That’s not weakness, that’s survival. Therapy, journaling, prayer, laughing with a friend, a 10-minute car ride alone — whatever helps you refill your cup, do it. You can’t pour into your family from empty.

You quickly learn that the little victories are actually big ones. A smooth clinic visit is a reason to celebrate. A walk around the block is a gold star day. A whole day with no dressing issue is a confetti moment. One dad told me, “When my wife laughed for the first time after surgery, I cried. That laugh meant she was still her.” Those moments are medicine.

Don’t try to be a superhero team of one. Rally your people: neighbors, friends, church members, school parents. Need someone to sit with your loved one while you shower? Ask. Need a meal dropped off? Ask. Need someone to watch the kids while you go scream into a pillow? Ask. Your village is bigger than you think, but you have to let them in.

Complications happen. Bad days happen. Meltdowns (yours or theirs) happen. One mom told me, “When things got rough, I sat the kids down and said, ‘Okay, this is hard, but we’re in it together.’ We cried. We laughed. And then we ordered pizza.” Sometimes connection is the best medicine.

Even with all the planning and hospital trips, there’s still joy. Board games. Sunsets. Dance parties in the kitchen. One couple I know has a tradition of Friday night cooking together. “It’s messy, loud, and half the time the food is questionable,” they said. “But it’s ours.”

This journey changes you. Your patience grows. Your gratitude grows. Even your humor grows (you start making jokes about alarms, because if you don’t laugh, you’ll cry). One woman put it best: “We stopped rushing. The little things feel big now, and I wouldn’t trade that.”

Living with an LVAD isn’t just about technology. It’s about family. Commitment. Strength. And yes, the kids who learn courage at an age when they should just be worried about cartoons and school lunch. Your family is proof that love can learn a new rhythm and keep going. So here’s to you, caregivers, kids, spouses, friends, showing up every day with grit, grace, and maybe a little sarcasm. You’re doing holy work, even if it doesn’t feel glamorous.

You’ve got this. And you’re not alone.

With Heart,

💙 Phoenix

"Your family is proof that love can learn a new rhythm and keep going."