My Thoughts On Getting a LVAD

I remember when the doctors found out that my heart was in the advanced heart failure stage. My parents and I were shocked because when I was diagnosed with dilated cardiomyopathy, we did not think it would progress so fast.

It had been 4 years since my diagnosis and also since I suffered a stroke. The whole time, I thought that my heart was in a stable condition because my heart was looking the same when my cardiologist did my echocardiograms. Although my ejection fraction wasn’t changing, it wasn’t getting better either.

LVAD stands for left ventricular assist device. It is a pump that operates mechanically, pumping the heart when the left ventricle can no longer pump efficiently. The first time I heard of an LVAD was when my friend from college had to get one. He was diagnosed before me with dilated cardiomyopathy, so I knew he was further along with the diagnosis than I was. The LVAD is a life-saving device, but I didn’t see it that way when I finally had it.

What are my thoughts on getting a LVAD for my advanced heart failure diagnosis?

Many times, people ask me what my thoughts were on getting the LVAD, like I had a choice. By the time the doctors caught my heart failure, I was already in the advanced stages. I had 2 choices - it was either life or death. I didn’t have the luxury of time to do my research and ask other people's opinions because the doctors were trying to save my life. I didn’t wake up one day and say I wish I had an LVAD. Most people don’t. I was thinking "let's get this LVAD on the road so I can continue with my life." What I didn’t know was how hard it was going to be.

I wasn’t prepared at all to get the LVAD. Unfortunately, I didn’t realize it until after the surgery. Everything the doctors and the coordinators told me about the LVAD went out the window. I was in so much pain after the surgery it was affecting my ability to think. It was easily the hardest time of my life recovering from that surgery and it was full of darkness and sorrow. I cried every day for about 6 months until I finally came to accept my advanced heart failure diagnosis. I think I was crying every day because of the death of who I had been and who I was becoming.

Now, having had the LVAD for a time in my heart journey, I can honestly voice my thoughts on it. Let me preface my comments by saying these are my opinions on the LVAD through my personal experience. The LVAD does what it's supposed to do: it extends life and sustains people who will bridge over to a heart transplant.

Getting acclimated to it being a part of my daily life was a challenge at first. Making sure my batteries and extra batteries are charged was another lesson I had to learn quickly. I always had to have extra batteries because they run the LVAD, which means if you run out of charged batteries, then the LVAD that is pumping your heart will fail.

The mental and physical toll of an LVAD

I heard someone say that getting through LVAD recovery is 90% mental and 10% physical and they were not lying. I wasn’t in the right state of mind when I got the LVAD because I suffered a stroke 3 weeks before surgery for the LVAD.

It really took an emotional toll on me because I wasn’t who I had been before the stroke. My self-esteem had taken a hit and adding this LVAD to it wasn’t exactly easy to get acclimated to. I’ve discussed many times before about mental health and my struggles with it. I wasn’t expecting to struggle as much as I did.

There was also the physical element to having the LVAD. It added an extra 10 pounds to me just because of the batteries that I had to carry with me everywhere. Taking showers was difficult as well. It was hard being around people and hoping that they didn’t ask me about the cord (the driveline) coming from underneath my clothes.

Lifesaving

All I can say is that it requires an adjustment period just like any other diagnosis. The most important thing is that it is a lifesaver and if I didn’t have it I wouldn’t be here. I can say that because my heart was in desperate need of intervention and I am so grateful that I was given an opportunity to have gotten the LVAD.