What’s it like to live with an LVAD? June 29, 2016 – Posted in: Blog – Tags: Heart of 29, LVAD clothing, LVAD vest, Rod Carew
Editor’s note: With today being the 29th of the month, American Heart Association News is featuring another story on baseball Hall of Famer Rod Carew and his ongoing battle with heart disease. Carew, who wore No. 29 throughout his career, is leading “Heart of 29,” a campaign to boost awareness and prevention.
FORT MYERS, Florida — Around 11:30 p.m. on the first night of a month-long stint at spring training, baseball Hall of Famer Rod Carew was settling into his hotel room when he heard something strange.
Beep! Beep! Beep!
The noise was coming from the equipment that keeps him alive.
Four months earlier, his failing heart was salvaged when doctors implanted a left ventricular assist device, or LVAD, to keep blood flowing through his body. When he and his wife Rhonda learned how to maintain the equipment, they were told it makes only two sounds: a loud, terrifying squawk with a red light that means there’s a major problem and they must call 911 … or, a lesser, cautionary chirp with a yellow light that means the batteries need changing.
This was only the chirp, sort of like a home fire monitor announcing that its battery needs changing. Still, it was the first time they were hearing it, so there was a bit of trepidation.
The moment served as a powerful reminder that living with an LVAD brings a whole new set of rules.
It also was a reminder that while Carew has been coming to spring training since 1965, in the world of being an LVAD patient, he was only a rookie.
As American Heart Association News continues this series of stories related to Carew and his Heart of 29campaign to boost awareness and prevention of heart disease, this installment looks at what it’s like to live with an LVAD.
Getting an LVAD is a grueling, gratifying experience. Someone whose heart is severely compromised is given a second chance at life.
Carew suffered a heart attack and cardiac arrest on Sept. 20. He later was diagnosed with heart failure, which meant the muscle was no longer capable of efficiently pumping blood. The LVAD took over the work of his damaged heart.
For some LVAD recipients, the device is temporary. They get it as a “bridge to transplant,” something they’ll need only until a new heart is available.
For some patients, it’s permanent. This is called “destination therapy.”
Then there are patients like Carew, who could end up in either category. While he hopes this is only temporary as he awaits being added to the heart transplant list, he knows the LVAD could become his constant companion.
Regardless of which category a patient falls into, the daily maintenance is pretty much the same. And as Carew and other LVAD patients say, they get used to the routine. Within a few months, sometimes even weeks, it becomes as much second nature as putting on glasses or wearing a favorite piece of jewelry.
“I don’t even think about it anymore,” Carew said in February, four months after receiving his LVAD. “I’m used to it now. It’s like my watch or my ring. I feel naked without it.”
Unlike a watch on a wrist or a ring on a finger, there’s more to an LVAD than the machinery in a patient’s chest. In fact, the internal apparatus is generally the least of a patient’s daily issues.
With most types of LVADs – there are various models – a wire called a driveline comes out of the body near the hip. This connects to a controller, which monitors the internal parts.
The entire thing is powered by batteries. Carew’s device, the HeartMate II, is fueled by a pair of batteries that, at first, he carried in a vest. The vest also had a holster for the controller.
Carew wore the vest on the outside of his clothes until his first working day of spring training with the Minnesota Twins. Carew won seven batting titles and was the American League MVP during his days with the Twins and still works for the club. One of his roles is as an alumni coach each spring. When he arrived at the clubhouse for the start of this spring training, the team surprised him by wearing T-shirts with the Heart of 29 logo. He pulled his on over his gear and liked how it looked and felt. He’s dressed that way ever since.
The vest turned out to be kind of uncomfortable against his skin. While an undershirt solved that, it meant an extra layer of clothes. Then Carew discovered the perfect mash-up: an undershirt-LVAD-vest combination. The shirt has built-in spots for the batteries and controller. It’s white, too, so it looks like a regular undershirt. Carew actually has two and both are considered prototypes by the creators.
Carew’s white undershirt that holds his LVAD gear is visible as he prepares to throw out the first pitch at Dodgers Stadium alongside fellow heart disease survivors.
The driveline is a major issue. Rhonda changes the dressing about every three days to reduce the risk of infection. The other issue is the controller not being supported and tugging on the line. It rarely happens but Carew certainly feels it when it does.
“The only time I feel very uncomfortable is if the controller is not in the pocket and it drops,” he said. “The wire pulls and it feels like it’s going to come out of my skin.”
There’s something really important to know about LVAD patients: Once the machinery is in place, their hearts work just fine.
“You’re not sick,” Rhonda frequently reminds Rod.
Aside from whatever limitations a doctor may order, LVAD patients have only two restrictions specific to their equipment:
- No contact sports because of what could happen if the components get smashed.
- No swimming, baths or hot tubs because of what water does to the electronics.
Showers are fine, but precautions must be taken.
“I’ve got a case that everything goes in and then we seal it,” Carew said. “They said I could use Saran Wrap, but it might leak. With the case, it’s easy. I strap it over my head and go from there.”
Another bag is so important that Carew carries it everywhere he goes outside his house.
This bag holds extra batteries and a backup pocket controller. Carew briefly used a backpack, but switched to a small messenger-style bag. It’s black and can be carried by hand or worn over a shoulder. Patients are encouraged to name their bag to make it seem like it’s part of the family; that way, it’s less likely to be forgotten. Carew calls his “Honey,” choosing the same pet name he uses for Rhonda because of how much he needs each of them.
It’s a sweet sentiment, of course, but there’s a lot of truth to it. Without a reliable support system, Carew may not have qualified to receive the LVAD.
“The whole cardiology team and LVAD team met with me, our son and his girlfriend before the surgery and demonstrated to us how everything worked,” Rhonda said. “They gave us a PowerPoint presentation and had an actual LVAD to show us.”
Only later did she learn that meeting was a screening to see if they could handle the caregiving duties.
As Carew signed autographs, “Honey” was nearby. The black bag is visible on a counter behind him.
Batteries are a daytime thing, giving patients the freedom to go wherever they want.
At night, Carew charges his batteries, so his device is instead powered by a wall unit. Plugging himself into a machine each night adds to his half-joking reference to himself being a Bionic Man.
When the Carews travel, they bring the wall unit in a suitcase all its own. The cumbersome luggage is just one wrinkle to traveling.
The Carews let their LVAD team know when they’re going to be on the road and where they’re going. The experts will let the Carews know where the nearest LVAD facility is, just in case. For instance, had that chirping actually been a squawking, they would’ve needed to get to Tampa.
Their team at Scripps Memorial Hospital La Jolla is always their primary point of contact. Even if something had happened in Florida, they would’ve called the folks in California and they would’ve arranged everything.
As for the actual traveling, it’s not much of a hassle. The Carews arrive at airports plenty early to get cleared by security and to pre-board. Airports and airlines see enough patients with medical devices that workers have the drill down pat.
Keeping up with the LVAD “stuff” is one thing. Keeping up with the body is another.
Carew is on a host of medications, and Rhonda ensures he takes the right number of the right pills at the right times. She also encourages him to follow a healthy diet and get in as much physical activity as he can handle.
He gets his blood drawn every few days to monitor for a variety of things, including internal bleeding.
Plus, there are various doctor’s visits. There could be more, as Carew takes steps to getting on the heart transplant waiting list.
Several Heart of 29 activities are coming up, including appearances in San Diego for events surrounding the All-Star Game and then at Boston’s Fenway Park and in Cooperstown, New York, for Hall of Fame weekend.
Everywhere he goes, Carew knows interested observers will ask to see his gear and to hear what it’s like.
He’ll give them his stock answer:
“It’s tough wearing it and having these batteries all the time. But, boy, it’s a blessing. A blessing.”
Carew shows what he keeps inside “Honey.”
© American Heart Association Inc. http://www.heart.org/HEARTORG/