Life on a 12-Hour Charge: Seeking Community in the LVAD Age

March 19, 2012

Washington DC — After Kevin White of Woodbridge, VA suffered a massive MI three years ago, his health went into precipitous decline, leading ultimately to the decision to implant a HeartMate II (Thoratec) in August 2011. Before he got his left ventricular assist device (LVAD), he says he couldn't walk up six stairs without resting. "My heart was basically shot; something had to be done about it," he explained to heartwire . "When I had the LVAD installed, the difference was like night and day. I feel 20 years younger."

But for White, some unanticipated aspects of day-to-day living needed to be relearned, and not every knowledge gap had instructions—a seldom-discussed reality of life post-LVAD for people whose lives and well-being depend on the small motor and a couple of rechargeable battery packs.

Driving a car with the pump, for example, can be a special hassle, White observed. The HeartMate II has a driveline percutaneously connected to an external "controller" apparatus strapped to a belt and often carried in a waist pack. Two freely hanging power lines connect the controller to a pair of batteries carried in holsters high under the arms.

 
There's a lot to be said for, 'Hey, you look pretty normal!'
 

"I have to be extremely careful when I fasten my seat belt that I don't get it caught up in the driveline and that I get it secured properly. I don't want to snag the seat belt on it. And it's the same thing when you undo the seat belts, you have to be very careful. I learned that by trial and error," said White, who is 60 and retired from the Prince William County (VA) water department in November. "You look before you leap, regardless of what you're doing."

Online guides from the LVAD companies offer an introduction to the technology, information aimed at alleviating early anxieties, and some tips for returning to certain activities. LVAD coordinators, most often specially trained RNs, also play a key role in educating patients. But as experience with LVADs grows along with the number of LVAD implantations, LVAD recipients are turning more and more to each other for skills and tricks for making living safe and a little easier.

Without question, the prospect of life with the pump can be daunting, especially at first, and at many centers the main format for peer-to-peer instruction is the support group.

HeartMate II [Source: Thoratec]

"If someone's struggling with it, I know from experience with patients and caregivers that the one thing that turns them around is meeting another patient or caregiver," said Alexis Griffin—one of two LVAD coordinators at the Washington Hospital Center's MedStar Heart Institute (Washington, DC).

LVAD and transplant cardiologist Dr Peter Eckman (University of Minnesota, Fairview) said his center's LVAD support group meets in a boardroom off the cafeteria, and many of the patients try to schedule their clinical appointments for the same day. "People who have been through it understand better than anyone, and it's something that I as a physician can't provide," he said. "There's a lot to be said for, 'Hey, you look pretty normal!' And it's surprising to me how often that's the most important thing for them."

Dr Peter Eckman

Gregory Sperl received his HeartMate II at the end of March 2011 after having his first pump explanted the month before due to methicillin-resistant Staphylococcus aureus infection. When he arrived home, he was "as weak as I can be," he said, but then slowly gained strength. "In about six weeks I was driving myself to outpatient rehab and on the road to recovery. I started swinging golf clubs in July."

Sperl, 55, of Inver Grove Heights, MN and a pipefitter by trade, spoke about the importance of personal relationships with other pump recipients. "When you make connections in other ways than as patients, it's very real," he said, referring to a fellow who showed up for the University of Minnesota LVAD group that week for the first time. "Here we find out that we worked for the same corporation for 20 years, and I was just trying to help him with driving directions."

And, Sperl continued, "I did experience the loss of one gal this week, the first patient that I'd gotten somewhat close to. I went to her wake yesterday and her funeral was today. I like making friends, but that part of it is hard for me to handle."

 
I went to her wake yesterday and her funeral was today. I like making friends, but that part of it is hard for me to handle.
 

Other device recipients, like Carlo Brunori, 73, of Annapolis, MD, who was implanted with a HeartWare HVAD in November 2010, also spoke to the value of support groups, not only for the pump recipients but also their caregivers—who are usually spouses or other family members.

HVAD [Source: HeartWare]

At a recent meeting of the Washington Hospital Center's LVAD support group, Brunori's wife and caregiver Carol was able to reassure new caregivers struggling with their responsibilities. "Keep at it; you're only going to get better at it," she said.

As Dr Steven W Boyce (Washington Hospital Center, DC), surgical director of the advanced heart failure program at his center's MedStar Heart Institute, put it: "Caregiver is a brutal job, as brutal as it is for the person living on the device, in terms of the emotional toll."

But despite the steady increase in the number of people living with LVADs and the number of centers implanting them, many LVAD patients do not live close enough to a center to attend support groups and meet other people living with the devices. "There are whole states that don't have LVAD centers," Boyce told heartwire . "There's not an LVAD center in Nevada. You can definitely live in Las Vegas with an LVAD, you just need to have the contact information of an implanting center," be it in Los Angeles or perhaps Salt Lake City. But what about direct contact with other people with LVADs when a patient is far from concentrations of them?

Enter the Online Community

The main social media sites, with hundreds of millions of participants worldwide (Facebook alone has reportedly passed 800 million users), offer obvious ways for members of the LVAD community to connect. However, the older age of many LVAD recipients—and their unfamiliarity with social sites—as well as concerns about the quality of information that could be shared in such forums, have deterred some users.

Dr Steven W Boyce [Source: Washington Hospital Center]

To offer an alternative, Boyce launched MyLVAD.com, a dedicated online community providing an informational, networking, and social gathering "place" for the growing population of people living with LVADs. According to Thoratec, which says >9000 HeartMate II systems have been implanted worldwide, there were more than 4000 people living on the pumps by the end of 2011. More than 1300 have been supported for more than two years.

"Prior to five months ago when I launched this site, the dearth of information on the web about LVADs was mind-boggling," Boyce said. And away from the corporate sites, much of the information about the fast-changing field was simply wrong or so out of date, the devices came off as "barbaric" to anyone considering implantation.

The site, with separate sections aimed at "recipients and caregivers" as well as LVAD coordinators and other medical professionals, features bulletin-board-style community forums for trading information as well as instructional and inspirational articles about life on the pump.

"For me, it's a real passion, because there's nothing quite like it out there," according to Boyce. "It was to give individuals with these devices a connection to each other that just wasn't there."

 
Those in their 60s or 70s are not as interested or inclined to go to Twitter or Facebook to connect with other people who have the pumps.
 

The site so far is funded by educational grants and Boyce's own contributions. "I'm certainly approaching the companies to see if I can get them to help. But it has been a bit of an effort to get everybody on the same page, to realize that a website that has no advertising, whether by hospitals, Thoratec, HeartWare, or anybody, is the right thing. This is a patient-advocacy website. This isn't about the companies."

Griffin, who devotes a lot of hours to the site and its design, said the community forums are probably its most popular feature and may eventually be the main emphasis. She's been working to make the forums "a little more interactive and dynamic, so people are more likely to post and follow posts."

White, who said he hasn't participated in the forums yet, still calls them "an outstanding idea, to have a place where people who have LVADs can all go to get updated information, exchange ideas with each other, talk to each other, get the latest LVAD news, or learn what the medical staff [at Washington Hospital Center] is doing."

But even a dedicated online space has its limitations for many people with LVADs; there tends to be a generational gap with respect to computer literacy and comfort level. And it works both ways, according to Eckman. "I'd say it's uncommon for the people under the age of 40 to connect vigorously with the support group as much, although some have," he said. "I think the younger patients have most often sought the online resources more actively."

He said he hasn't actively promoted MyLVAD.com for his patients, as those inclined to use online resources tend to find them on their own.

Always a Phone Call Away

One aspect of the site has particular appeal—and may ultimately drive more LVAD patients online: the LVAD Supported Hospital Map . "We found that there are many people living three, three and a half, four years with these devices who have very active lives—working 50 hours a week, traveling worldwide," said Boyce. "And if they wanted to drive from Washington DC to visit relatives in Tennessee, it was a nightmare for the LVAD coordinators." They had to find LVAD sites along the way, call them, and help the patients figure out an optimal route.

"That's how embryonic the field was," he said. "Basic information—how to get from point A to point B and always know you're just a phone call away from people who understand your technology—didn't exist."

MyLVAD community forums 14 Dec 2011 09:57 PM

by: MyLVAD. Yes, you will make it through [the Transportation Security Administration check] TSA with your LVAD. Again, make sure you have paperwork from your LVAD team with you and give yourself extra time at the airport (we suggest at least two hours). Notify them you cannot go through the metal detector and request a pat-down inspection.

Now, the MyLVAD.com Google-Maps app flags the location of every LVAD center worldwide and identifies efficient routes. One look at it shows how inconsistently they're spread out, with vast spans of the world lacking any. In the US, the map shows heavy concentrations in the East and far fewer in the West, with several Western states having none.

VAD-supported hospital map [Source: MyLVAD.com]

"This field is going to grow so explosively over the next couple of years that patients will have to be in charge of their health," according to Boyce.

"Even though I want to know what the patients are up to when they travel, and I want them to talk to me about it, now they're not as dependent on us for some things," said Griffin. "They can go on the map, they can plan a trip. It helps for them not to have to depend so much on us."

Travel is encouraged from the first LVAD training, she said. "But first make sure you are medically stable. And you have to be medically stable from the perspective of the whole team."

 
A guy who opened the door for me when I checked into a hotel in Williamsburg, [VA] said, 'Oh, is that an LVAD?'
 

There are a few challenges with car travel—beyond the seat-belt awareness highlighted by White—but the overriding one, battery life, is made less onerous by 12-volt power adapters that let the device draw off the vehicle. "Which is great," said Brunori, who is originally from "a little coal town near Scranton, PA. I've been up there and it's a four-hour ride. But when you're hooked up in the car, you're saving your battery. That makes it very easy."

Lugging the bag with spare batteries and the controller, however, is routine. "I've kind of gotten used to it. I've never forgotten it going or coming. I've forgotten about everything else, but the batteries are always there," said Heely, who says he uses the MyLVAD.com map to locate LVAD centers whenever traveling so he can "head in the right direction" if an emergency arises.

LVAD recipients who spoke to heartwire had moving stories about their lives leading up their LVAD implantations and adapting to life on the pump.

Plane travel is "almost uniformly a source of some anxiety to people," Eckman said—despite the fact that his center alone has put in about 600 LVADs since 1995, and as a result, security officials at Minneapolis airport have seen their fair share of devices.

"I had a little internal trepidation. I was told by the doctors and nurses that there's nothing to it," Timothy Heely, 59, of Leonardtown in southern Maryland, said about his first commercial flight with the HeartMate II. In the end, his bag with batteries, a controller, and other parts sailed through security, while his wife's bag didn't at first make it through because "she had a 'suspicious'-looking shoe," he joked.

 
How heavy is all that stuff? I said, 'It's a lot lighter than six feet of dirt.'
 

Indeed, Heely says he has sometimes been surprised that strangers he meets know something about the device. "A guy who opened the door for me when I checked into a hotel in Williamsburg [VA] said, 'Oh, is that an LVAD?'" And the device doesn't generally raise eyebrows at the seemingly ubiquitous security stations, complete with X-ray and metal detectors, at federal buildings in nearby Washington, DC. "Either [former vice president] Dick Cheney paved the way for the rest of us ," or more likely, he proposed, there are just a lot of people these days carrying or wearing medical devices.

"I think more people are aware that, since Dick Cheney got his pump and was discharged, even if they don't know much about [the device], they do know that he isn't just stuck in a hospital," according Eckman. "I often say to patients that you don't have to be Dick Cheney to get a pump."

MyLVAD community forums 11 Feb 2012 05:09 PM

by: Danr68. Today, I took my first shower since my LVAD was implanted 6 1/2 months ago. It was absolute heaven.

Heely, a former Navy pilot who retired in 2008 after 33 years in the service, says he first tried to hide his LVAD in public. "Then I thought, what am I hiding? I'm grateful for it, and part of my giveback is that I wish more people would ask me about it. I want to spread the word." It does happen, however. Recently a man he didn't know pointed to the apparatus with its harness and wires and to his bag containing a spare controller and extra batteries and said, " 'How heavy is all that stuff?' I said, 'It's a lot lighter than six feet of dirt.' "

All LVAD recipients interviewed described showering as if it were grossly underappreciated in the days before they received a device. Swimming and other immersion is off limits; showering is not but can be difficult and calls for some creativity, even with the "shower kit" that the companies have provided recently for encasing the external components and protecting the line-entry site.

Eckman said some of his patients take sponge baths; many resume showering only weeks after surgery. "People have different ways that they adapt to this."

Brunori said when he was implanted, there wasn't a shower kit for the HVAD and he had to take sponge baths. "Then luckily they came out with a bag that I can put my battery pack and controller in, and it's pretty water resistant. He said now he takes a full shower about twice per week.

But Heely says the routine of covering up the device for showers is one of the big drawbacks of life with the pump. "For a guy who used to just kick his clothes off and hop in the shower, it takes some doing," he said. "The days of the three-minute shower and out the door aren't there anymore."

 
If you stand up quickly, you get dizzy. It didn't take me long to figure that out.
 

Others spoke of the extra time taken to get dressed in the morning, brushing their teeth, or shaving. "You have to be very careful that you don't get it snagged," White said. Getting clothes on is a "slow and deliberate" process. "You don't want to lose your balance when getting your trousers on. You have to maintain control of your body all the time. You definitely don't want to fall, because there's no telling what would happen."

In fact, a lot of getting used to life with the device consists of slowing down, physically and mentally. Along with White, Heely and Brunori also commented on the need to "take your time" when doing almost anything.

"It's what I have to do now—not try to rush it or do a lot of things, because that's usually when an accident will happen," Brunori said.

"After I got out of the hospital, the biggest thing I had to learn was to not stand up too quickly," Heely said. The HeartMate II isn't rate-responsive like a pacemaker. "If you stand up quickly, you get dizzy. It didn't take me long to figure that out."

MyLVAD community forums 16 Jan 2012 09:50 AM
by: MyLVAD. Avoid touching television screens, dryers, and computer screens too, since static electricity is easily transmitted from any of those items.

"You have to change about 15% of life. It doesn't have to change 100%. The biggest change is a little extra planning. I'm not as spontaneous as I used to be," said Heely. But even that has an upside. "I'm a lot less tense driving—I let people pass more."

LVAD recipients also vary in the degree to which they can resume activities they enjoyed before the pump. Brunori, a diabetic since age 30 who underwent quintuple coronary bypass surgery in 1984 and retired after 30 years with the Maryland Department of Natural Resources, used to be an avid hunter. In the fall of 2011, he was able to return to it somewhat. "I couldn't run around the woods like I used to, but I could pick my spots. It was the highlight of my whole winter season."

White said he "used to very much enjoy canoeing, fishing, and swimming." But those are now out. And he was a serious backpacker. "I have to restrict myself nowadays; more or less I've become a bird-watching hiker, just enough to get some fresh air. I still have my pack, but now it's half full of my backup controller and batteries and such," he said. "Properly carrying the batteries and controller is really a large part of winning the battle in staying as normal as possible in your activities."

No Longer a Last-Ditch Option

Alexis Griffin

The number of people living with LVADs is only going to increase. Thoratec estimates the annual number of "chronic VAD" implantations internationally to close in on 10 000 by 2015, more than double the current level. And since the HeartMate II was approved in the US as bridge to transplantation in 2008 and as destination therapy 2010—it's been available in Europe since 2005—the trend has been to consider LVAD implantation ever earlier in the course of the disease. "A few years ago, we probably wouldn't have considered putting LVADs in some of the people we put them in today," Griffin said. "It's not used as a last-ditch effort [anymore].

"Sometimes it's hard for people to agree to go through with it, if they're not that sick to begin with," according to Griffin. "Some of their symptoms can be managed with medication. But, definitely, the earlier you can [implant] them, the better they do."

 
There are those who get the device and are really unhappy with it, and ask, when can I have the transplant?
 

Predicting the best time to initiate LVAD therapy remains more an art than a science, however. The proportion of LVAD implantations that are in people with the most dire Interagency Registry of Mechanically Assisted Circulatory Support (INTERMACS) profile 1 (critical cardiogenic shock[1]) has fallen off, while the number with less serious profiles 4 to 6 (resting or exertional symptoms but no inotrope support) "has gone up substantially over the past several years," said Eckman.

But, "there's still substantial uncertainty about the right time to do it," Eckman added. Of the 50 or so LVADs his center puts in a year, perhaps two of the patients "walked in but then had catastrophic complications. When that happens, you find yourself asking, were we too soon?"

"Trading Off to Another Set of Unknowns"

White, Sperl, Brunori, and Heely all have their pumps as bridge therapy and are wait-listed for a heart with varying degrees of priority as well as philosophical outlook about transplantation as the possible next step. "It depends on how the individual adapts," according to Boyce. "There are those who get the device and are really unhappy with it, and ask, when can I have the transplant? That's very rare but it does happen."

 
I still have my pack, but now it's half full of my backup controller and batteries and such.
 

Others may begin to reconsider getting a new heart. "They say, I'm comfortable with this and don't want another big operation. We're very clear with them that there's a risk to taking out the pump and doing a heart transplant," Boyce said. "Some aren't that interested, if they're doing well on the LVAD, in trading off to another set of unknowns."

"I believe if it's offered to me, I will take it. It's risky to do that because, you've got what you've got now, and it's a gamble to go through the transplant because that's even harder on your body," White said. But, "I think I'd go for it, because as good as the pump has been for me, I'd really like to try be as normal again as I can, and the only way I can do that is get the transplant successfully."

Theoretically, Brunori said, he is United Network for Organ Sharing (UNOS) status 1B, but he knows his chances, being older than 70, are less promising than for a younger candidate. He also knows that "steroids are bad medicine for a diabetic."

"The way I feel now, I told them, I've got no problem if I can live as good as I'm living now," he said. "You've got to count your blessings every step of the way."

Eckman discloses receiving honoraria from Thoratec and HeartWare and grant support from Thoratec. Boyce had no disclosures.

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