My Interview About Living with a Defibrillator

Sorry it's taken me so long, these past few weeks have not been my best. I've been sleeping almost constantly and have not been feeling well at all. I'll sleep all day and wake up around 4 in the afternoon but I'm still tired. So today we got a blood test (had to get poked twice- yikes!) to see if it's my thyroid or if it is my heart function.

But before all this started happening, I did go up to California to be in a video about living with a defibrillator. Lucile Packard Children's Hospital asked me to be in the video for a conference they are putting on for patients who are either going to get a defibrillator or have recently gotten one, and are nervous, scared, worried or completely opposed to the idea. The point of the interview was to show other patients how other patients, including myself have dealt with the device.

Part of my story was the fact that I initially didn't want the device. I refused to have another surgery, to have another scar, to be stuck in the hospital again. I was sick and tired of it - as I'm sure so many heart patients are. But eventually, after my doctors sat me down for close to two hours and explained how poorly my quality of life would be without it, I sucked it up and got it put in. The best decision I ever made.

Beth Freeman interviewing me!
I talked about how I'm sure a lot of girls watching this video are worried about having a scar, just like I was. In a world that is so focused on physical appearance, its hard to feel beautiful when you're constantly being told that your scar makes you ugly. But thankfully, the scar from this device is easily hidden un straps of tank tops. I told the camera that because I've had the big scar in the middle of my chest all my life, I got used to the new scar quicker than some might - but that eventually you won't see it. It will just be part of you. The topic of dresses came up and I told them that I never shopped to find a dress that covered up my scars, in fact the majority of my dresses were strapless because straps on dresses had a tendency to bug or irritate my scar. I told a story about how one year I put make up over the scar in the middle of my chest, but after looking at photos from that night - I decided it just didn't look like myself. The scars had become part of me and they weren't meant to be hidden. It will get used to if you haven't had a scar before and if it really bothers you that much, there are cute cardigans or shawls you can wear over your shoulders to hide them when you wear dresses. I just don't want anyone to feel like they have to cover up their scar, because you don't. You are beautiful.

Sound crew and filming crew were wonderful!
One of the questions the producer Beth Freeman asked me had to do with what I would tell patients who thought because they got a device, they lost or had to give up things. It's true, when you get a device you do give up certain things. No roller coasters that have seat belts over the chest, no caffeine usually, no contact sports, no jumping on trampolines. In California Adventure's there was an old fashioned bumper car game and the fact that the floor was magnetic made it so that I couldn't even go on a kiddie ride. And I listed off these things that I've had to give up because I'm not going to sugar coat it, its hard. It has been hard and disappointing for me to give up certain things, especially roller coasters because I'm an adrenaline junky. But it's worth it. Yes I have given up some things, and yes other patients who have the device have done the same. But think of what we've gained from the device. Sure I gave up coasters and caffeine but I got to go to prom, graduate high school, get my drivers license, go to college, go on more family vacations, experience more birthdays and holidays that I know I wouldn't have gotten to experience if it weren't for this device. I think giving up contact sports, caffeine and roller coasters for getting to live is just a small price to pay. In the grand scheme of things, I told the camera, going to the state fair once a year and not being able to go on the rides is worth putting up with for getting all of these years added to my life.
The whole crew, myself and my dad!

Another topic was the feat of the device going off when it didn't need to. I told them that I have a recalled lead, which means it could break much easier than the other leads because of how it was made. If a lead were to break, there is an even bigger chance of the device shocking when you don't need it. But I told them that I don't live in fear and neither should other patients. I don't stop myself from doing things I want to just because my device could go off. I told them that I follow the rules, no caffeine, no jumping, no rides that toss you from side to side and other rules, so I am taking all the precautions I can. If it goes off, it goes off. Worrying about it and stopping myself from living life isn't going to prevent it from happening, its just going to make me lose out on some amazing experiences.

I can honestly say that without this device, I would've either died, or if I had lived - my quality of life would not be nearly as great as it is now. One of the last questions was what I would tell someone who was on the fence about getting the device, I told them to get it. It's a scary idea to get surgery and to get a scar, but I have never once regretted getting the device.

I want to thank Beth Freeman. her team and Lucile Packard Children's Hospital for allowing me to be part of this amazing project!

Hope and Love,


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My Life As A Chronically
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