Adusting to Life with the LVAD

When I found out that I had advanced heart failure it felt like the ending of my story was near. There were suddenly all these feelings of things I’d never done before and how I turned 30 a few weeks prior. When the doctors diagnosed me and took me to the cardiac ICU, I never thought an LVAD would be in the conversation.

A LVAD stands for left ventricular assist device and is a machine that runs on the left ventricle. It helps the heart pump when it can’t pump efficiently. My dilated cardiomyopathy worsened to the point of needing an LVAD or a heart transplant. "How did we get here?" I thought. The heart transplant was taken off the table because I also suffered a stroke a few weeks before and my body was too weak at this point.

Learning about how the LVAD would change my life

I just thought this was part of the process, but I didn’t fully understand how it would negatively impact my life. Don’t get me wrong the LVAD did exactly what it was supposed to do and I will forever be grateful for what it did for me. I didn’t know how much it would affect my everyday life. The change in life was drastic. It was so difficult trying to get my life back to what it was before the LVAD surgery.

My family and I had to go through a class on what to expect and be educated on the LVAD. Nothing they taught me in that class would have prepared me for life after LVAD surgery. That’s when they told us that the LVAD had limitations and one of the things was not going in any water which meant that swimming was out of the question.

Adjusting to life with the LVAD for heart failure

Starting from when I got out of the surgery until about a month after the surgery I was in pain. This was the most excruciating pain that I have ever experienced because it hurt every time I moved. This is because the device is attached to the heart and wires come out by the belly button. Then attached to the wires (or the driveline) are the batteries which have to be charged on a daily basis. I was adapting to the LVAD and fighting the battle of acceptance. This was my new normal.

I felt ugly, like I didn’t have any worth, because here I was 30 years old walking around with portable life support. I also felt like nobody wanted me around because I had become a burden to my family, and I was no longer allowed to do the things I once enjoyed. I really felt as though nobody wanted to do anything with me due to me having the LVAD. It was a moment in my life when I was unsure of myself. My world had collapsed and the new reality began to sink in. "This is real," I thought, and that’s when I decided that no matter what I was going to be grateful that I was alive and live this life.

It was challenging trying to maneuver through life with an LVAD. At first, I thought that people were judging me but, in reality, nobody was. It was my insecurities. I started driving when the doctors took me off of sternal precautions and started driving myself to cardiac rehab. This gave me a sense of independence and made me feel like a functioning adult. I would also drive to get my nails done, to the grocery store, and most importantly to mental health therapy. My friends started inviting me to things and some friends never became my friends again but, it was for the better. Not everyone is supposed to be along for the journey.

The more time that I spent with myself, getting to know myself, the more comfortable I felt with the LVAD. It was hard work trying to build myself back up from nothing because I was also trying to recover from a stroke. I had to work on my confidence from ground zero -- starting from scratch. It’s given me a chance to get to know myself and I will always be grateful for what the LVAD did for me. It gave me a second chance at life with my family and friends.

Adjusting to life with heart failure

What did you need to adjust to after your diagnosis with heart failure? Was it a LVAD or another device, limitations, changes to relationships and routines? Let us know more about how your life changed and what adjustments you had to make in the comments section.