Help Dylan Conquer His Heart Journey

Hello, friends and family,

I hope this message finds you well. I'm reaching out to you today with a hopeful spirit. It's not easy for me to ask for help, but at this moment, I need your support.

I just had my second heart surgery. This journey has been a long and challenging one, filled with moments of uncertainty and countless hospital visits. Many of you may not know the full extent of my health struggles, as I've chosen to keep them private. However, pride and independence can only carry me so far, and now I'm humbly turning to you.

In 2019, at age 26 I faced a life-altering event when I experienced three heart attacks. This forced me to leave my career in medical device sales and relocate from California to focus on my recovery. I have a heart condition called ARVD, which comes with the added complications of general right stenosis and Slow and fast VT (ventricular tachycardia). My heart often races uncontrollably, reaching dangerous levels, until either my body or my pacemaker intervenes to reset my heart rate.

These past three years have been incredibly challenging, not just for me, but also for my loving wife, Taylor, who has stood by my side through it all. I'm immensely grateful for the support I've received from those who've reached out and been there for me.

I recently finished paying off the medical bills from my 2019 surgery, during which I had a pacemaker and defibrillator implanted. Now, I'm facing another surgery, one that offers hope for a more stable future by reducing the chances of ventricular tachycardia events.

Your support, whether big or small, can make a tremendous difference in my life. It will help cover the costs of this upcoming surgery and getting through the recovery process.

I understand that times are tough for others, and any assistance you can provide will be sincerely appreciated. Even a kind word or a share of this post can go a long way in spreading the word and rallying support.

Thank you from the bottom of my heart for being a part of my journey and for considering a donation.

Dylan Peterson’s Heart Story Read time: 10 min read after here.

“One should work, only if it is the right thing to do.” Dr. Harikrishna Tandri, MD

Cardiac Electrophysiology Age 52

The last 4 years have been a challenge, I’ve kept it to myself and am sharing my story and asking for help. I was diagnosed with ARVC in 2019 when I was 26 years old when I experienced my first heart attack. I typically only want to share positive and encouraging news.. While this story has its struggles, it’s merely a recap of my journey that has lead me to what is hopefully a better future. I have experienced difficult times with cardiac arrest, (VT) Ventricular Cardiomyopathy, (ARVC) arrhythmogenic right ventricular cardiomyopathy, my pacemaker, stenosis in the heart... yet I have no blockages, just electrical issues. Like many people in the world, I've been through the ringer. I’m now 30 years old and was, for the most part, healthy in the last few years. Having VT episodes, both slow and fast, all the way up to 300+ bpm... this is what caused me to go to Vanderbilt Hospital to see Dr. Tandri to receive an ablation this week. Something he said I should have gotten years ago. I am sitting here writing this now as I go into my surgery, simply to reflect on my life and experience with this disease, only to be of encouragement to those that have not been through this yet, have gone through it any are struggling or those dealing with their own personal battles and need some encouragement.

The disease ARVC is a physical and mental battle. It’s not easy. I believe there is hope that this illness can and will be solved within our lifetime.

I am hopeful that this ablation will solve my issues with VT episodes. Time will tell.

I’ll check back in after I heal and can determine if I feel stronger! I plan to return to a completely normal lifestyle. If I have to modify things, I am okay with that, but the way I am living now is extremely stressful.

Here’s how things have gone from my perspective:

9/19/19 - In 2019, I had three near-death events three consecutive weekends in a row, and on the third one, I was immediately taken to the hospital. The third time, I went into cardiac arrest. I was treated immediately, and after blood work, the doctors said I had record-level troponin levels for a completely fit, young 26-year-old man. I spent 10 days in the hospital and underwent stress tests to recreate the scenario because they had little to no idea what was wrong. We called in specialists to inquire about my symptoms, and everything led to ARVC with a general right stenosis and a heart that is 5x larger than the average person. I underwent surgery, couldn’t sustain my job in medical device sales, and I moved out of California to “fix my health” and reset. We all remember March of 2020 and let’s just say it was the perfect time to move to Montana. Those two years in Montana will hold some of my first memories in life were I found balance in my relationship with life and work. Montana allowed me to slow down and prioritize my peace within myself. I also made some life long friendships. :)

Ever since then, I randomly have issues sleeping because I associate peacefully falling asleep with having a heart attack. The memory of falling to the ground, watching the world close in on me as everything in my vision narrows while I feel nothing but peace and warmth, subconsciously haunts me. When I’m in bed, the trauma is like a knee-jerk reaction that I cannot control for the last 4 years. I don’t think about it ever, and when I’m asleep, I’m okay, until I’m in VT in bed, gasping for air. That’s what I mean... this disease is a mental battle.

The main lesson I learned and want to share is for men and women who are like me, highly competitive individuals that want validation through their hard efforts. Just stop it. I’ve done it too much and there has to be a healthy balance. You must start with only doing what is right for you. If you are going to make any sacrifices or take any chances in this life, you must strive for what you feel called to do. Otherwise you will find yourself in position of responsibilities without passion. I am fortunate that I was able to learn this hard lesson through my experience. I very well could have continued to work a job that did not align with my passion, if I was healthy I don’t think I would be as happy as I am know only because I was not my authentic self. This all made more sense to me when I asked Dr. Tandri what the meaning of his name was. His response was very humble and I had to pry for a response. His response was simple, yet layered with deeper meaning. I’m writing this off the top of my mind so Dr. Tandri correct me if I misunderstood. Harikrishna in his words means to be a healer through one’s work. What stood out the most to me was that he said “One should work, only if it is the right thing to do.” I will remind myself of this when I’m making any decisions around my work and life as I see Dr. Harikrishna Tandri as a beacon of light as a man who is deeply inspired with passion in his craft. Which results in peace, confidence and purpose.

Don’t be hard-headed and not ask for help. I was so embarrassed to be “passing out” that I had convinced myself and everyone else around me that nothing was wrong because I didn’t want to seem weak. I know it sounds crazy, but I had no idea what was wrong with me and would chalk it up to being malnourished, tired, sick, long weak, bad night of sleep, ate something funny. I would literally say everything under the sun to get people to leave me alone and not think I needed help. I played sports where I was told things like “pain is weakness leaving the body,” “never give up,” and many other toxic mindset traits that are very common among high-performance athletes. My entire life, for some reason, I felt that I needed to be the best at everything I do no matter what, even if it meant killing myself physically to learn that trait or skill. What started in athletics transferred into the work environments as well. Which my bosses, for the most part, loved because I like winning... I'm setting the stage only to broadcast that my biggest issue is feeling like I was constantly letting everyone down around me, even though I was more than adequate. Stop trying to please others and make sure you are checking in with yourself before you try to benefit others. I set myself up for failure because I wasn’t taking care of myself. I can’t say for certain that I caused my own health issues; it’s genetics, but I didn’t start having issues regularly until my adult life when I started doing things that were not in alignment with my passions. I started to have issues. I moved to Montana, became a photographer, and my health was noticeably better. Although I still had VT events. The happiness of doing my passion I believe protected me for the longest time.

I went undiagnosed as a Division 1 athlete and can recount a dozen times throughout my life where I went into what I can now recognize as VT, had an incredibly high heart rate of 300+ bpm, completely blacked out, and woke up near immediately (which felt like an eternity or a lifetime). Each time I was doing something of extreme cardio. Thankfully, on dry land and not in the pool, which is so weird to me. I have spent 10,000+ hours playing water polo at a very high level. Why did it happen on dry land 20+ times and only in the water 2 times? Again, I have no idea. Maybe because I’m happier in the water!

Fast forward to winter 2022. My wife and I decided to move to Nashville, Tennessee, to get out of the cold climate and pursue our careers instead of living the life of a retired 60-year-old. Pretty understandable, seeing that my wife is very healthy, and I want nothing more than to be normal, plus I was feeling really good. I only had a few VT events, and I kept them to myself, and everything was fine. I talked to my doctor, and they said there’s nothing I can do about it, just take it easy. So we moved to music city, lol. I LOVE Nashville; it took a moment to grow on me, but now I have a community of people, I had that in Montana as well, it’s very important to have community. I’ve been able to get back into the water polo community with the Nashville Channel Cats. I have a very fulfilling job as a content creator for very inspirational people, including my wife @taylor_lovee. Go follow her on Instagram and subscribe to her YouTube channel Taylor Love Peterson. A full book coming about her soon. She’s literally the best person in the entire world. Taylor, I love you more than anything and I cannot thank you for putting up with me and all this... I’m sorry I’m so lovable and frustrating at the same time. More on her soon.

Nashville: I have noticed a huge increase in stress from living in a city, learning a new place. Also, I somehow wound up as a campaign manager, which was actually a fun and fulfilling job as I was representing someone who has an equal passion for helping others. Hindsight, even though I was good at networking and running a campaign, it was not good for my health because I couldn’t control myself. I was having fun being normal and working hard. Until now. I no longer wish to work hard. I only aim to work smart. Back to my point of living in alignment. I prefaced that I love Nashville and am happy here. Montana was a place where there were nice, calm people, calm things, and a calm way of life that forced me to move slow and intentionally. That was a healthy lifestyle for me. Nashville... well, Nashville is just fun, okay, haha, so I need to recalibrate the way I live.

Less than 6 months of living out of alignment In Nashville, the most fun place ever... I was humbled again.

94-degree body temperature = bad:

One sleepless night, I felt really, really weird. I took my body temperature with two different thermometers, and it came out 93.9 degrees... My body temperature went down to 93° for 20-30 minutes, then 95° for another 30. The whole time I was not well. I was running up and down the stairs, eating fruit, doing everything to “bring my body temperature up”... The symptoms were: - Blurred vision - No shivering - Fumbling motor skills (terrifying) - Slurred speech. I didn’t know that was dangerously low, and when I googled if it was bad... yes, yes it’s bad. I took the body temperature as a red flag and asked for help. But still, pride got in the way. What did I do... I kept it to myself for 3 hours trying to snap out of it so I could go to work the next day. Why had I not learned my lesson?

Meet Dr. Tandri at Vanderbilt: I finally made an appointment to go see Dr. Tandri and meet him for the first time. Tandri is an ARVD specialist from John Hopkins University that comes highly acclaimed. We immediately saw him the next day. Upon our first meeting, I didn’t give Dr. Tandri much to go off of, no previous records from my last two hospitals. Just said that I had a Boston Scientific device that was installed in 2019 and that my body temperature went down to 93 degrees the previous evening. I was establishing care with a doctor, and that was it. He asked loads of questions and immediately requested all of my medical history from labs, reports, and results. We chatted for 25 minutes non-stop. He didn’t one thing... everything was accounted for and followed up on by his team. A dozen things we conversed about in our FIRST meeting. He made my chart, took notes, and followed through. My wife and I were stunned by his acumen, concern, and genuine interest.

This is what I texted my dad after that meeting.

“Meeting with Dr. Tandri went really well. Although, Everything came back normal in terms of basic blood pressure and temperature. He was perplexed about my situation. He said it could have been a number of things and wants me to get some things done so he can better assist me.

I’m doing the following

-Blood work

-Referrals for a general practitioner -Full testing monitor that I’ll wear

-No shower for 48 hours. -Wearing wires to get data. -Next appointment 2 weeks -Then sleep study

I’ll let you know how it goes.” End of text message.

I did all the lab work, and unfortunately, at that time, there was nothing to explain what had happened to me with the 94-degree body temperature.

“That’s it. Another dead end with no answers..” That’s how I felt. Even though Tandri was doing everything he could to find a solution. He did mention the possibility of an ablation, but at that time, I wasn’t having VT events that were bad enough for me to speak up.

The depression: Was pride my problem? Is it my health? Is it the deformed heart? Of course, by the time I get help, my body recalibrated on its own instead of calling 911... my wife was furious, doctors are confused, and I’m just depressed. All I can think is I have a heart disease and just fell into a depression. Unrecognizable to anyone in my family, friends, and of course, my wife. It’s been harder on her than anyone. I couldn’t control whether or not I was distracted and really happy one minute because of something that piqued my interest.. or extremely silent with my thoughts and keeping all the pain to myself. I didn’t know what to do or how to handle things. I wasn’t mad, angry, violent ... I was just simply dead inside with no emotion. I could turn on a smile and go to work, I actually enjoy what I do in Nashville. Works not the issue, lifestyle isn’t the issue, it was my health and this disease tormenting me that was the issue. But there was no solution at the time. ( I am so relieved now to have a solution and something to look forward to my body has been operating on less than 40% and it has been a real challenge.

A few weeks later:

Wednesday 8:15 pm, June 26, 2023, Ihad yet another major heart event. I had a heart rate of 350 bpm; I was less than 10 seconds away from having a therapy from my defibrillator, and instead of going to the hospital and asking my friends for help, I went home, told my wife, and we pressed my Boston Scientific home device to ask for a report from my cardiologist. I was called in immediately the next morning, and Tandri prescribed me flecainide to control my arrhythmias. Flecainide did work and it did not work well with me. I experienced very dull symptoms that were not noticeable until my next meeting with Tandri, which was only 2 weeks after being prescribed flecainide. The worst being blurred vision and thinking I was actually needing a new prescription, but I went to the eye doctor, and they couldn’t get anything into focus for me... I thought I needed a new prescription, not knowing a side effect of flecainide was blurred vision. That was one of those things that was just really a silent killer to my mood. Tandri picked up on it right away and said we need to do an ablation. So here I sit about to go under and hopefully change my life for good. The main benefit of an ablation would be to reduce/eliminate arrhythmia’s.

Post-surgery: I’m in a lot of pain. They did an approach under my sternum, I’m staying in the hospital for a day or two, racing panic attacks through the night, and the only thing keeping me distracted at the moment is writing this recap of my experience. I can’t make any real observations for a while. Couldn’t sleep stayed up all night,

Haven’t slept. I just got home and am feeling really good. I’ll be back up and running in a few weeks. The last 4 years have been a real challenge and I have been facing it alone.

My goal:

- To go live my life and put this thing to the test, I’m not giving up..

- To help others who feel that they have to do it on their own learn how to speak up when they need help.

- To teach others how to speak about their struggles and face them in a healthy manner. - To spread the word on arrhythmogenic right ventricular cardiomyopathy and be a leader in the space creating hope for a healthier lifestyle.

I promise to myself that I will not be stubborn or selfish and will ask for help when I need it. I have such an amazing family that loves me dearly, irreplaceable friends that would do anything for me, and an incredible network of people that are constantly giving me love and prayers.

I have such a wonderful life that is worth living, and I want to pursue my dreams and goals while inspiring others to never give up on what makes them happy.

If you are diagnosed with ARVC or ARVD, share your story. Don’t keep it to yourself.

Non-ARVD people, especially young people like me... If you’re out of tune with your body, whether it be illness, disease, weight, mindset, or general happiness, seek help before it becomes a bigger issue. Don’t wait and make an appointment to make sure you are taking care of yourself. I thought I was invincible. I was only 26 years old and had something terrible happen to me. While that might sound rare... 6 in 10 adults in the United States have a chronic disease. It’s not worth waiting around to find out. Trust me.

If there’s anything you can do to help me during these difficult times, I would greatly appreciate it. I have accumulated medical debt and need support to start off the new year.

Please share this message with acquaintances just $20 goes along way! I will be reaching out to everyone regardless with an update. https://gofund.me/54372580

With heartfelt gratitude,

Dylan Peterson