Living with an LVAD: 5 tips to make it easier
Many heart failure patients rely on left ventricular assist devices (LVADs), which are amazing medical implants that pump blood throughout the body. LVADs can mean the difference between life and death for patients whose hearts are no longer strong enough to pump on their own.
These increasingly common devices are an effective option as a patient waits for a heart transplant or as long-term treatment if they don’t qualify for a transplant. Before the mid-2000s, we implanted only around five LVADs per year. Today, we implant 18 times as many at the rate of about 90 a year!
LVADs literally give advanced heart failure patients a second chance at life. I love when they tell me, “I’ll get to see my grandkids grow up” or “I’m going to finish my college degree.” In my experience, the people who do the best with their LVADs are those who look at the glass as being half-full, rather than half-empty.
Having an LVAD requires planning ahead and doing things a little differently, and we help our patients focus and figure out how it’s going to work for them going forward. Below are five of the most common pieces of advice I share with my advanced heart failure patients.
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1. Avoid swimming and baths
For the rest of your life after LVAD implantation, you’ll have a cable called a driveline sticking out of your stomach area. That cable goes to a controller and batteries that keep your device going. None of the LVAD components outside your body can get wet. That means you won’t be able to go swimming after receiving your LVAD, nor will you be able to take a bath or get into a hot tub.
Your care team will give you a special bag or apparatus to protect the outer parts of your device in the shower. I also recommend putting your controller and batteries a safe distance away from the shower to keep them from getting wet accidentally. It’s usually a good idea to change your driveline site dressing just after taking a shower to make sure the site stays clean and dry.
2. Rethink wardrobe choices
Because of how the driveline, controller and battery packs are designed, they have to be worn outside the body. Many patients wear them on a pocketed belt or vest to carry the various pieces. But that doesn’t mean you’ll be stuck wearing something that looks like Batman’s utility belt everywhere you go.
I’ve seen some creative workarounds from LVAD patients. One surprising option comes from the world of law enforcement, where police officers may have to conceal weapons underneath street clothes. Concealed-carry tank tops can be worn like an undershirt, with the pockets keeping your LVAD components undercover.
Several years ago, I was at a panel hosted by the Food and Drug Administration (FDA) when a new LVAD was up for final approval. A woman walked in who I originally thought was one of the manufacturer’s representatives. It turns out she was a patient who had been living with the device as part of a clinical trial. She was wearing a skirt above her knees and high heels—uncommon clothing choices for an LVAD patient due to the equipment. I couldn’t see where her controller and batteries were at first. It turns out she had come up with an innovative way to hide her LVAD equipment in her purse, with her driveline going from her dress to her bag almost unnoticeably.
Related reading: The journey of LVAD technology for advanced heart failure
3. Sleep soundly with your new closest companion
If you thought your dog was your best friend, think again. After LVAD surgery, your controller will be. And much like a bed-hogging dog, your LVAD controller has some specific demands for how and where you’ll be allowed to sleep.
Unfortunately for people who sleep on their bellies, this position can press or pull on the driveline. I recommend sleeping on your back or side. The main thing is to make sure the driveline doesn’t get pulled or tangled while you sleep.
Also, you’ll need to plug your device into a power outlet while you sleep, because you may not be able to hear or respond to the controller’s normal low-battery alarm. You may need to sleep on the other side of the bed or move it closer to a power outlet. In case of a power outage, make sure you have these items near your bed:
- Backup controller
- Charged batteries
4. Exercise, but do so carefully
Exercise is important to health after LVAD surgery, but certain activities can put your LVAD equipment at risk and endanger your life. Patients should avoid any contact sports, or sports that involve touching other players. I also recommend against taking part in activities with a high risk of falling. In addition to swimming and other water sports, some of these activities I recommend patients avoid include:
- Horseback riding
- Martial arts
That said, some of my patients have found ways to keep enjoying the activities they love. I have several patients who love to shoot hoops and one who routinely rides his motorcycle down to Florida. So it is possible, but you will have to discuss the appropriate precautions with your doctor.
Cardiac rehabilitation is an important part of recovery after LVAD surgery. This supervised exercise program will help you get back up to speed after your procedure, and you may find that you can be more active after getting your LVAD than you were able to do before.
Cardiovascular, or cardio, exercise is important for heart health, especially with an LVAD. Walking, jogging, jumping rope, playing golf or gardening are just some of the options patients with an LVAD can do. Strength training, such as lifting free weights, is important as well for building muscle and controlling weight.
5. Take care when traveling
Many of my patients are concerned about traveling with their drivelines and other metal components, especially if they fly frequently for work. The good news is that there are enough people with LVADs now that the Transportation Security Administration (TSA) officers should be familiar with the procedures for them. Before your trip, it’s a good idea to review the TSA’s special procedures for people with disabilities and medical conditions, particularly the sections “Implants & Internal Medical Devices” and “External Medical Devices.”
Make sure you take backup batteries and an extra controller in a carry-on bag. Talk to your medical team before you travel, as they can provide a letter to allow you to keep all your LVAD-related equipment with you on the plane instead of in checked luggage. You most likely will need to have a pat-down inspection at security checkpoints, so tell the officer where your driveline is to avoid any problems.
Oftentimes, the bigger issue for patients is being near somewhere that can care for an LVAD in case of an emergency. I see this happen frequently, especially for patients who come here to have our team implant their LVAD and then return to their home countries afterward. Any problem, even minor ones, become major crises when you don’t know where to go to get help.
That’s one of the reasons I created MyLVAD, a resource for patients and loved ones to deal with the challenges of having an LVAD. We’ve published a smartphone app called the MyLVAD Hospital Locator. This app, available on both the App Store for iPhones and the Google Play store for Android phones, lists every single LVAD center in the world and finds the closest one based on your phone’s current location. To date, there are about 280 centers listed, and we update the data every year.
Say you’re on vacation out of the country with your family, and your device’s alarm goes off. You can open the app and find:
- Which LVAD centers are closest
- What devices they use
- Contact information for the LVAD centers
As of December 2017, MyLVAD is the only LVAD app in the world with that level of information for patients.
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