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When patients find out they need a left ventricular assist device (LVAD) to treat their advanced heart failure, they go through a wide range of emotions. Some people who may have been sick for a long time are grateful and eager to regain a higher quality of life. Others who may have gotten sick quickly over a couple of weeks or months may be shocked that they need an LVAD. Sometimes they’re angry and disappointed, saying, “Why me?”
Patients and families understandably can have a tough time adjusting. That’s a normal reaction, and we’re ready for that. After the initial shock, most patients understand that the device can save their life and make them feel a lot better, but it takes some time to come to that. Our LVAD team recognizes and helps support patients and families with a new LVAD when they go home.
How a new LVAD can affect the emotions of caregivers and families
When LVAD therapy was new, it was strictly an inpatient treatment for patients waiting for a heart transplant. As LVAD therapy became more innovative, patients could leave the hospital and manage their devices on their own or with the help of family members and caregivers.
While it’s fantastic that patients can go home with an LVAD, it can be stressful at first for families. Sometimes, family members have to take on chores and duties the patient used to handle, such as caring for the children or paying the bills. They may feel burdened by the added responsibility. Sometimes, they’re scared or unsure of their role in caring for a loved one’s LVAD. They might be worried they’ll harm their loved one if they make a mistake.
These family members might struggle with “what-if” worries:
- What if I make a mistake?
- What if I don’t do the dressing right?
- What if I don’t hear a device alert?
The more this stress piles up, the more likely caregivers are to develop burnout, which causes people to feel extremely overwhelmed, making it challenging to continue to care for their loved one.
Our social work team counsels caregivers one-on-one through these intense feelings. We also have online community forums and in-person caregiver support groups. It’s good for them to hear from others who feel the same way, and it validates that what they’re feeling is normal.
How we help patients and families prepare for a new LVAD
We created a pre-LVAD class for patients and families to learn about the device and what to expect. If patients are too sick to come to the class, we come to their bedside. The class is offered twice a month and includes information about:
- Advanced heart failure
- LVAD management and how it works
- Our team
- What to expect, including that LVAD patients won’t have a pulse
We also provide a welcome packet, resource materials and videos from the device manufacturer. We have a 50-person team that is dedicated to every aspect of LVAD patient and caregiver care before, during and after surgery. As part of that care, we’ve created a website, MyLVAD.com which offers information, resources and support for LVAD families. In preparing our patients and their caregivers, we offer hospital tours, informative videos and pre-procedure education.
Remember, every patient and family will go through a unique process as they get used to living with an LVAD. Preparation is key, and we’re here to help make the process as smooth as possible for the whole family.