I Should Not Be Alive Right Now

I'll start by saying I should not even be alive right now.  I was born with two genetic diseases of the heart and kidneys, both of which affect each other negatively.  My heart disease, ARVD/C, is known for taking the lives of young athletes.  I should have been one of them.  Typically, the first person in a family to be diagnosed with ARVD suddenly passes at a young age. 

When I was a child, I began getting short of breath very easily due to an increased heart rate, and by 10 years old, I started to blackout (lose my eyesight) in the middle of sporting events.  By the time anyone could get to me, I was usually laying down by that point so my heart rate subsided.  By mid-college, 2008, I started to pass out.  Each time I passed out, statistically I should not have woken back up.  I continued to pass out much more frequently the next couple years until the end of 2010 when my heart was racing so fast that I couldn't even pass out.  My heart rate was just under 300 bpm.  It took them multiple medications, anesthesia, and shocks to get me back into a normal rhythm.  I say again, I should not be alive right now.

Once I had my ICD placed in me shortly after that episode, nothing was going to kill me.  My ICD has gone off multiple times since, causing a great deal of pain, anxiety depression, fear, etc.  During that time we also discovered my kidney disease, my entire life as a child and as an athlete I not only had a malfunctioning heart, I was living with very little potassium causing my heart to malfunction even more.  I had deadly low levels of potassium all my life, once again I say, I should not be alive right now.

Since 2011, when I was officially diagnosed with both my heart and kidney disease, I started to get my life back on track now that my health was in a more stable condition.  I started working by 2013, moved back out west by 2015, and had a stable career in education by 2016.  My annual tests showed that my heart dysplasia was staying steady, it was already in the moderate levels.  Although I had a few hiccups along the way, developing two other arrhythmias on top of my ventricular tachycardia, we thought my heart was still holding up structurally.  I developed Atrial Tachycardia which was ablated in 2017 and then Sinus Tachycardia which I continue to take medicine for.

Since 2017, my activity levels have drastically reduced.  We thought it was due to the Sinus Tachycardia but now we know that is simply a symptom of Heart Failure.  Due to my anxiety of being shocked and my inability to push myself physically due to the symptoms I was feeling, my doctor suggested I take a stress test, but not your typical one.  She wanted me to take the CPET, it measures how much oxygen you are getting to and from the heart.  During the test I tried pushing myself but around the 9 minute mark I had to start closing my eyes to concentrate on my breath.  They thought I was getting dizzy and because I wasn't allowed to talk, though I couldn't even if I wanted to due to the apparatus, they stopped the test at 10min.

I was very upset.  I have been taking tests since I was a young child for my heart even before I was diagnosed.  Tests I took never showed anything, it was something I consistently heard.  They used to tell me I was just dehydrated.  Well my mindset has kind of been the same since so I thought this was another failed test that wasn't going to show anything.  A couple weeks later when I go see the doctor to discuss the test I realized I failed in a drastically different way, Stage 3 Heart Failure.  Not only that, my blood pressure does not rise which is rare and not ok and that studies have shown candidates with my numbers have a 50% mortality rate within a year.

I have not been able to process this news.  I find out in a few weeks if we can even move forward with a transplant work up.  If my lungs have too much pressure in them, which is very likely than I am not even eligible for a heart transplant.  There is a very good chance that I may not be living in a few years or even in a years time.  Even if I do get the transplant the one year survival rate is 80% and the 10 year survival rate is less than 50%.

Though this is tremendously hard to swallow, I should be grateful that I am even alive.  Statistically I should not be here writing this.  No one wants to die prematurely, no one wants to die before they can even get married and start a family, no one wants to leave their loved ones behind, to think they didn't live life enough, to think that there is so much more to do.  So many thoughts are running through my mind but right now I am staying busy with our big cross country move.  It's the nights that are difficult.  I dread night time every single day. It's when all my insecurities, emotions, wild thoughts and feelings, have the time to rear their ugly head.

We're all dying and we all know that but very rarely do you have time to sit and contemplate your death, very rarely are you faced with the way you will die.  I will fight to the bitter end as I have since I was a child.  I will continue to love life as I have since I was a child.  Life is unbelievably precious and sacred and I am not ready to call it quits.  July 3rd is when I get my next big news so stay tuned!

Love you all.  Thank you to everyone who has donated their time and money.  Thank you to my family for always supporting me.  And thank you to Sterling for being the man I couldn't even dream of!

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