A woman with heart failure, filled with colors, singing out a rainbow

Ask the Advocates: Mental Health (Part 2)

Editor's note: This is part 2 of a three-part 'Ask the Advocates' series on mental health. Part 1 can be found here.

We asked three of our advocates, Julia, Tina, and Alyssa, to: "Describe a time you handled a high-stress situation well." Here is what they said.

Describe a time you handled a high-stress situation well

Julia

High-stress situations are common for me growing up with half a heart. Due to my congenital heart disease, I grew up much faster than most normal healthy kids. Many times throughout my life, my family and I were put under high stress. One time that stands out is something that happened very recently.

I went in for a regular heart check. A standard cardiology appointment. I was told that my heart is enlarged and that I would need a heart catheterization to determine the scale. That alone can be stressful but what happened next was even more. I had a CAT scan before the upcoming procedure to determine the doctors’ course. The results showed something on my lung. The doctors now wanted at PET-CT scan to find out more. Of course, my question was 'Are these tests necessary now?' The response was yes.

I had the PET-CT scan done and am still trying to figure out some of the findings. During this time being isolated, I have found out a lot about myself. I found that taking it day by day and focusing on the good things has helped me a lot during this uncertain high-stress time. I found that singing has been my saving grace. Being able to express myself through music has helped a lot throughout my life - as well as now. I only have control over certain things in my life right now, so I have been trying to accomplish the little things I can and find joy in that.

Tina

I’ll be honest, there have been times I haven’t handled a high-stress situation well. I’ve learned from those over the years. Other times, I can sit back and laugh in amazement when all is clear. So, let me share the day my LVAD controller needed to be replaced.

I was out running errands - shopping for groceries - and ran into Dollar Tree on my way home. While in line, I heard my controller making a faint beep from inside my bag. I changed my batteries before I left home. They were fully charged and should’ve lasted 10-12 hours. I pulled the controller out of my bag and noticed a red light that indicated there may be a problem with the controller itself.

I left my cart, headed to my car, and call my LVAD team. Giving me reassurance everything was ok, I was advised to swap out my batteries just to be sure. I changed out the batteries, and all seemed good. I went back into the store, grabbed the cart I had abandoned, and got in line. Well, the controller started beeping again. I went back to the car and called my team. This time they decided that I needed to change out my controller, but I could not do that alone.

There were two fire stations within a mile of me. I went to the first, rang the doorbell, and there was no answer. I walked around the side, the door was up, and there was no fire truck in sight. They were out on a run. My controller does have a way to silence the alarm momentarily. So, every few minutes the alarm sounds again. Staying as calm as I can, I drive down the street to the other fire station praying the entire way. Yes, they are home!

I called my LVAD team back and walked into the station seeking assistance. Once my team explained what was needed everyone was on board. Through speakerphone, my LVAD team walked the firefighters through a controller exchange for my LVAD. I was so thankful, and I was even more surprised at how thankful the firefighters were for giving them the opportunity to learn something new!

I went back to Dollar Tree, found my cart, and successfully checked out! Lol!

Alyssa

When I was started college, I underwent a severe episode of transplant rejection. The rejection was due to my lifestyle as a college student and new medication timelines. I wanted to be a “normal” college student and underestimated the effect of not keeping a strict medical regiment.

At first, it was extremely difficult for me to accept that I played a part in what was now my new reality. If I wanted to make it through this I was going to have to work on my mental health. I knew there was no time for denial and contacted my therapist immediately. Not only was I going to have to put in the work to get physically healthy, but I would once again have to strengthen my mental health and reconstruct what my new normal would look like. I always feel better when I let go of what “normal” looks like and just live every day by my expectations that I've gotten help from mental health professionals to create.

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