Starting your journey with an LVAD is just the beginning of a new chapter in your life. Whether your path to this point has been through heart failure, a heart rhythm issue, a viral infection, or any number of conditions, you are joining a unique group of people—those who rely on the power of a battery to support their heart and their lives.
This is a big transition, and naturally, you probably have many questions. It’s okay to feel unsure. What you’re experiencing is significant, and we’re here to help guide you through it. Whether you’re seeking information or just someone who understands, consider reaching out to us. We can connect you with other LVAD patients who can share their experiences, offer support, and even mentor you as you adjust.
What is an LVAD?
A Left Ventricular Assist Device (LVAD) is a mechanical pump used to help people with heart failure by supporting the left ventricle in pumping blood to the rest of the body. The left ventricle is responsible for sending oxygen-rich blood to the aorta, which in turn distributes it throughout the body, making the LVAD critical for maintaining life by ensuring a steady supply of oxygen to tissues and cells.
The device works by taking blood from the left ventricle and pumping it into the aorta. It consists of several key components:
- Pump: The central component that is implanted in the chest.
- Driveline: A cable that passes from the pump through the skin to the external controller.
- Controller: A small computer that runs the pump and alerts the user with messages and alarms.
- Power Supply: A rechargeable battery or cord that powers the pump. The batteries provide up to 18 hours of power.
LVADs are primarily used for individuals with end-stage heart failure and can serve as a Bridge to Transplant (BTT), supporting the patient while they await a heart transplant, or as Destination Therapy (DT), for those who are not eligible for a transplant. The LVAD helps improve quality of life, alleviating symptoms, and enhancing survival until the person either receives a transplant or, in the case of DT, continues using the device for the long term.
LVAD use has become more common, with over 2,500 individuals receiving one annually in the United States, due to improvements in device technology leading to better survival rates for patients.
See the Heartmate 3 in action: https://www.youtube.com/watch?v=T37WrT-lDhQ
Is a normal life possible with an LVAD?
Living with a Left Ventricular Assist Device (LVAD) can feel surprisingly normal, although there are specific adjustments to make in daily life. Some of the aspects of life with an LVAD include:
- Battery Management: You’ll need to be mindful of the LVAD’s battery life. The device and batteries weigh about 7 pounds, so carrying the pump and power supply with you becomes part of your daily routine. Over time, your body adjusts to this additional weight, and most patients find it becomes second nature.
- Training and Preparation: Hospitals provide comprehensive training to ensure you’re prepared for life at home. This helps you become strong enough to manage the device and any necessary adjustments.
- Mental Health Challenges: While physically you may feel fine, mentally, the experience can be exhausting. It’s important to have a solid mental health support system in place to help you cope with the emotional aspects of living with the device. Having a supportive team, both professionally and personally, contributes to a more positive experience.
- Community Awareness: One challenge of living with an LVAD is that many people, including medical staff and security personnel, may be unfamiliar with the device. You may have to educate others about what it is, how it works, and how to assist you properly in certain situations.
- Slow Progress: The process of adjusting to life with an LVAD is gradual. It takes time, and improvements come slowly. However, over time, as you adapt, you will start noticing improvements in your daily life. You’ll begin feeling more like yourself, and many LVAD recipients regain much of their former activities.
- Active Lifestyles: Many people with LVADs continue to enjoy a wide range of activities. Some examples include:
- Golf
- Hiking
- Running
- Biking
- Sailing
- Kayaking
- Camping
These activities, while requiring some preparation and adjustments, are all within reach for LVAD patients. As you progress, you’ll learn how to safely approach these activities and make them part of your routine again. A positive attitude, along with persistence and support, is essential for achieving these goals.
Ultimately, while living with an LVAD may require some adjustments, it is a life-enhancing device that can make a huge difference. Many people who live with it find themselves leading fulfilling, active lives.
What are the possible side effects of the LVAD?
The benefits of a Left Ventricular Assist Device (LVAD) procedure include significant improvements for those with end-stage heart failure. The device:
- Improves organ function: It enhances blood flow, which in turn improves the function of vital organs such as the kidneys, liver, brain, and others.
- Reduces symptoms: It helps alleviate fatigue, shortness of breath, and swelling.
- Increases activity levels: LVAD recipients often regain the strength to participate in activities like cardiac rehab that were previously difficult.
- Allows home recovery: Many patients are able to return home after the procedure, which improves their quality of life.
In terms of success, the procedure doesn’t cure heart failure but does improve life expectancy. About 80% of people who receive an LVAD are alive one year later, and nearly 50% are alive four years later.
However, there are also risks and complications associated with LVADs, including:
- Infection: Especially at the site where the driveline exits the body.
- Blood clots and stroke: Blood clots can form and potentially lead to a stroke.
- Bleeding: Due to the nature of blood-thinning medications used with LVADs.
- Right heart failure: The right side of the heart may fail due to the additional strain.
- Kidney injury: Poor blood flow or complications may lead to kidney damage.
- Device malfunction: In rare cases, the device itself may stop working or malfunction.
Recovery typically involves a hospital stay of 14 to 21 days, followed by follow-up visits with your healthcare provider. Initially, appointments are frequent (weekly for a few weeks) and taper off as you recover. If you’re awaiting a heart transplant, follow-up visits are at least every three months.
Signs to call your healthcare provider include:
- Fever or pain around the LVAD insertion site.
- Chest or abdominal pain.
- Bleeding or swelling in your body.
- Shortness of breath, chest pain, or other issues with the device.
Ensuring good communication with your healthcare provider about risks, recovery expectations, and when to seek help is key to managing your health after receiving an LVAD.
Sources:
https://www.aliem.com/lvad-part-iii-complications/
How to handle your diagnosis like a pro
Receiving the news that you need an LVAD can feel overwhelming and devastating, but how you handle this moment is crucial in shaping your journey. Everyone processes such news in their own way, and there is no right or wrong way to feel. The key is giving yourself time to absorb and process the diagnosis. You may not fully understand it at first, and you certainly won’t have a clear plan of action, but that’s okay. The first thing you can do is allow yourself to adjust.
Think of someone like Tom Brady—success isn’t just about talent; it’s about professionalism in every moment, including how you face setbacks. Handling this news with grace and determination, even when it feels tough, is part of the path forward.
Constructive steps to process your diagnosis: Once you’ve taken some time to relax and allow the news to sink in, it’s helpful to take proactive steps. Reaching out to others is a great way to begin processing:
- Write an email to a friend or family member, just to share your thoughts and feelings.
- Call a loved one, even if you just need to talk or hear a familiar voice.
- Journaling: Writing down your thoughts can help clear your mind and give you perspective on what you’re going through.
Each of these steps can help you process what you’re experiencing in a healthy way.
Assembling a Mental Health Team: One of the most important aspects of dealing with an LVAD diagnosis is ensuring you have the right mental health support in place. Here’s how to start:
- Consult a social worker or mental health lead: Social workers are a tremendous resource and are often underutilized. They can connect you with professional mental health resources and provide guidance during difficult moments. Don’t hesitate to lean on them—they’re there to help you navigate your feelings and find the support you need.
- Seek professional help: Psychologists, therapists, and counselors can provide essential emotional support. They can help you work through the mental and emotional aspects of your diagnosis and assist you in adjusting to the changes in your life.
- Lean on friends and family: While professional help is critical, your close circle of friends and family will be the ones who can provide the day-to-day support, especially when you’re struggling emotionally. A social worker might not be available at 3 a.m., but a good friend will be there to listen or lend a hand when you need it most. Cultivating strong relationships and staying connected with the people who care about you is essential for your mental well-being.
Remember, you don’t have to face this journey alone. Building your mental health team and leaning on others will help you maintain the strength and resilience needed to navigate the challenges ahead.