A Day in the Life of Tessa

Ava (Tessa's older sister): "Her name is Tessa. She is 7 years old. We live in West Virginia. My sister has cardiomyopathy. So, what does cardiomyopathy do?"

Tessa: "It's a heart disease."

Ava: "Makes it sort of hard to pump your blood, right?"

Tessa: "Yeah. Why are you asking?"

Ava: "Her heart was getting a little bit too big and the blood just wasn't pumping out the way it should have. So, it was hard for her to breathe. They had to put in the HeartWare to help her heart to pump a little better than what it did. She had been feeling so much better. I'm really glad she got to get this."

Tessa has a VAD. It's a system of stuff that pumps blood to her body.

Care team member: "Can you show us some things? What's that monitor thing?"

Tessa: "On the top, that's my flows, and that's the rate that it's going, and at the bottom, that's how much power."

Care team member: "So it's telling you how well the VAD's working?"

Tessa: "Yep."

Care team member: "So what is it hooked to?

Tessa: "The driveline."

Care team member: "What's a driveline?"

Tessa: "It's a line that goes in you."

Care team member: "And then, where does it go?"

Tessa: "All the way up here."

Care team member: "To the device."

Tessa: Yeah.

Care team member: "What's this?"

Tessa: "That's my controller."

Care team member: "Controller? So this is what pumps--what actually works it, the brains?"

Tessa: "Yeah"

Care team member: "OK, and this is your driveline to your body?"

Tessa: "Yeah."

Care team member: "And then, what about all these other cords?"

Tessa: "That's a battery. That's the wall. That's the monitor; and these are other batteries.

Tessa can pack the VAD controller and batteries in her backpack so she can go mobile!

Tessa: "How you doing? I look forward to spending peoples' money in the gift shop. I wanna buy this."

Pop Pop: "You do?"

Tessa: "Yeah. Signature, OK. I couldn't go to the gift shop without my VAD."

Ava: "So, this is why your VAD is important, right?"

Tessa: "Yeah, so I can go downstairs. I like to go outside. I like to chase my sister."

Ava: "I can tell that she's feeling much better. Her mood is so much better than what it was. I'm waiting for her to get the transplant and she'll go to the Ronald McDonald House and by that time I'll probably already be out of school and we could just hang out at the Ronald McDonald House for, like, three months."

Interviewer: "Do you feel better?"

Tessa: "Yeah."

Interviewer: "What would you tell one of your friends if they needed one?

Tessa: "Don't be scared. It's OK."

(Published July 2018)