Life With An LVAD

When I got diagnosed with dilated cardiomyopathy in 2014, I never knew that I would be in advanced heart failure 4 years later. Dilated cardiomyopathy is a heart disease that happens when the left ventricle is not pumping efficiently to the rest of the body. Ultimately causing the heart to get enlarged.

In 2018, after suffering a second stroke in my heart journey, I was diagnosed with advanced heart failure. The treatment options for someone with advanced heart failure are medication therapy, a heart transplant, or a Left Ventricular Assist Device (LVAD). An LVAD is a battery-operated pump that pumps blood to the heart.

I was put on a medication called milrinone which widens the blood vessels and boosts the strength of the heart. The milrinone stopped working, unfortunately, so that is when the doctor told me I would need an LVAD.

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Getting a Left Ventricular Assist Device

I only knew about the LVAD because one of my friends had to get one. The night before LVAD surgery, the doctors wanted to put an intra-aortic balloon pump to bridge me to the LVAD. An intra-aortic balloon pump assists the heart pump more blood. It is a thin catheter that goes into the inner thigh with a balloon on the end of it. The balloon is then put on the aorta.

During the procedure, I went into cardiogenic shock which means that the heart was not pumping efficiently. The doctors were calling the surgeon because they thought they were going to have to send me to an emergency LVAD surgery. The doctors finally got me stabilized enough to wait til morning.

When I first woke up after LVAD surgery I thought of how much pain I was in and I did not think I would make it through it at first. Then the pain subsided and I was forced to take control of my life.

Adjusting to life with an LVAD

I had very good days, but that also came with bad days. It was easily the hardest year of my life to date.

The physical change was hard for me to accept and my mental state was completely altered. I lost 30 pounds and was looking like a sack of bones. I had to carry 10 pounds of batteries and the controller that controls the LVAD in my fanny pack. Your batteries always need to be charged and you must always have a backup at all times. The batteries are your lifeline and it pumps the machine so if they are not charged the machine will stop working. It was weighing me down, especially with me being 129 pounds. I felt embarrassed walking around with it everywhere I went because people around me did not know what it was. I did not want to be seen anymore.

One of the most embarrassing things that happened is when I went to a soccer game and they were checking bags. The sign said no bags were allowed, and of course, I had my fanny pack and the backup bag with me.

Security asked to see inside of my fanny pack and I had to explain what it was. I then had to lift up my shirt for him to see that the LVAD was attached to me. I was so embarrassed because he was very loud and unprofessional and everyone was looking at me.

There were times when I felt I did not belong anywhere, but there were also fun times with the LVAD. I remember going apple picking, bowling, and hiking. I also got the chance to be independent again. I was embracing life with an LVAD and no longer was I hiding from people. It may not be a lot for some people but, after all I went through to be able to go out and live my life.

From LVAD to heart transplant: Part of my heart failure journey

Although it was really hard adjusting to the LVAD I am grateful for it because, without it, I would never have gotten a second chance at life.

It took me some months to get used to living with the LVAD and when I finally started accepting the fact that I had it, I was called for a heart transplant. The LVAD had many challenges, but it did the job it was supposed to do and I never had issues or emergencies.

The lesson learned here is to never give up because your day will come.

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