HLHS

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a research program with the goal of delaying or preventing heart failure for individuals with HLHS.

To learn more or to participate, email HLHS@mayo.edu.

Follow the program on Facebook at Mayo Clinic HLHS, on Twitter @MayoClinicHLHS, and on Instagram at MayoClinicHLHS.

PUBLIC PAGE
Wed, Jun 13, 2018 9:53am

Gabrielle Wanek: HLHS can't stop me from being in the marching band

By suzannerferguson, @suzannerferguson

band

I was in concert and marching band from sixth grade until I was a junior in high school. I know I was a band geek, but there is a reason I am saying this so stick with me. I marched at multiple different performances, from Torch Light in La Crosse, Wisconsin to Red Rock Amphitheater in Colorado. I’ve had my fair share of experience with all types of different people, from people who have had too much to drink to hardcore marching band fans and through it all I had a blast.

We were one of the best marching bands around the area. Marching bands normally stay on the street, but we really didn’t. We would create two giant lines (hope we didn’t get lost) and weave into and through the crowd or go into buildings if the doors were open. We were a great band, but there was one thing that I learned while playing my heavy snare drum - I learned a lot about dealing with my medical issues. One thing that may affect other people with HLHS is that we can’t take the heat. Now when I say the heat, I don’t mean getting angry or facing life’s pressures. No, what I mean is that we can’t take high temperatures, which is something that I found very interesting. You’d think that maybe I would just overheat because I was wearing the full cotton material of the marching uniform. Nope, it’s actually a real that has become a part of my trials and if not taken care of immediately one can get heat stroke.

If it’s a dry heat then it’s normally fine, however, it's the humidity mixed with the heat that will make the person overheat faster. Being a person with HLHS, you have to always be aware of how warm you are. One of the clear signs of a person getting far too warm is that they are getting out of breath. Something that I have learned throughout my twenty-three years is that even if I’m  walking a short distance in the heat, if I start to pant, then I need to get inside immediately. Another sign is my cheeks start turning red, with or without signs of sweating. Each time that I have gotten overheated, my symptoms are different. The only thing that really remains the same is that it's hard to breathe and you feel uncomfortable in your own skin.

Overheating is something that I became intimately aware of especially while I was in the marching band in high school and I might add, it is not fun. I would never forgo my experiences, it’s just all about learning what you can handle and working around it to get what you want.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Liked by Genevieve

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