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!
Gofundme.com/kiele
Friday, June 21, 2019
Wednesday, March 23, 2016
Anxiety is Real
In my life up to now, I've had to face adversity time and time again. With my heart disease has come my most difficult challenges.
Panic attacks and anxiety were always just words to me. I never fully understood them and I definitely could never empathize with individuals who faced severe anxiety. Well, I understand the condition now. After another ICD shock last year, I became a victim to debilitating anxiety.
Back in 2011, when I was shocked, fear took over. Fear debilitated me. As we all know, time heals all and eventually I was able to let that fear take a back seat, and after a couple years living life as normally as possible, my ICD reared its ugly head again. This time, however, it wasn't the fear that took a hold of me but rather it was anxiety.
I began to have weekly panic attacks. Severely enough that paramedics were called and a couple attacks even required a trip to the ER. At this point, I wasn't aware that anxiety was causing all of these incidents, and it didn't help that Jackson Hole had no way to interpret my ICD. For those of you who are reading this that may not be familiar with cardiac arrhythmias, a panic attack feels almost identical to an episode of ventricular tachycardia. A racing heart, clammy hands, panic mixed with a little fear, and shortness of breath.
I remember the exact moment that my brain put the puzzle pieces together and realized all of these attacks had been caused from anxiety and not an actual arrhythmia. We were moving to Denver five months after said shock, we had just gotten back on the road from a lunch break and all of a sudden my heart starts to race. I immediately panicked, and noticed all of the same symptoms that I have been having. I had to pull over for an hour and wait for the attack to subside. Due to the majority of attacks occurring after a meal, I was able to realize my heart was not having arrhythmias, yes my heart rate would increase during those attacks, but it was purely anxiety.
These attacks left me in a vicious cycle during each episode. The panic attacks would go as follows: my heart begins to race due to the onset anxiety, which then causes more panic to set in, which then leads to an even higher rate leading then to even more anxiety and so on and so forth.
Now that I have recognized anxiety for what it is, the attacks become less and less, the panic subsides a bit, and the mind relaxes. I am still dealing with anxiety and I try to improve a little at a time, a trip to the gym for light exercise here and there, a game of disc golf, a trip to the mountains, etc. It seems the further I step, the more I heal. The fear is still there, the anxious mind remains unsettled, but the debilitation has left. I have become stronger and even more aware of how my body responds and reacts to different situations, so there are positives that came out of this negative.
The purpose in sharing my experience with anxiety is to open a dialogue amongst fellow ICD patients regarding recognizing and overcoming the fear and anxiety associated with a heart disease and a cardiac defibrillator.
Panic attacks and anxiety were always just words to me. I never fully understood them and I definitely could never empathize with individuals who faced severe anxiety. Well, I understand the condition now. After another ICD shock last year, I became a victim to debilitating anxiety.
Back in 2011, when I was shocked, fear took over. Fear debilitated me. As we all know, time heals all and eventually I was able to let that fear take a back seat, and after a couple years living life as normally as possible, my ICD reared its ugly head again. This time, however, it wasn't the fear that took a hold of me but rather it was anxiety.
I began to have weekly panic attacks. Severely enough that paramedics were called and a couple attacks even required a trip to the ER. At this point, I wasn't aware that anxiety was causing all of these incidents, and it didn't help that Jackson Hole had no way to interpret my ICD. For those of you who are reading this that may not be familiar with cardiac arrhythmias, a panic attack feels almost identical to an episode of ventricular tachycardia. A racing heart, clammy hands, panic mixed with a little fear, and shortness of breath.
I remember the exact moment that my brain put the puzzle pieces together and realized all of these attacks had been caused from anxiety and not an actual arrhythmia. We were moving to Denver five months after said shock, we had just gotten back on the road from a lunch break and all of a sudden my heart starts to race. I immediately panicked, and noticed all of the same symptoms that I have been having. I had to pull over for an hour and wait for the attack to subside. Due to the majority of attacks occurring after a meal, I was able to realize my heart was not having arrhythmias, yes my heart rate would increase during those attacks, but it was purely anxiety.
These attacks left me in a vicious cycle during each episode. The panic attacks would go as follows: my heart begins to race due to the onset anxiety, which then causes more panic to set in, which then leads to an even higher rate leading then to even more anxiety and so on and so forth.
Now that I have recognized anxiety for what it is, the attacks become less and less, the panic subsides a bit, and the mind relaxes. I am still dealing with anxiety and I try to improve a little at a time, a trip to the gym for light exercise here and there, a game of disc golf, a trip to the mountains, etc. It seems the further I step, the more I heal. The fear is still there, the anxious mind remains unsettled, but the debilitation has left. I have become stronger and even more aware of how my body responds and reacts to different situations, so there are positives that came out of this negative.
The purpose in sharing my experience with anxiety is to open a dialogue amongst fellow ICD patients regarding recognizing and overcoming the fear and anxiety associated with a heart disease and a cardiac defibrillator.
Wednesday, April 15, 2015
A Road Trip to Starting a New Life
http://www.gofundme.com/ontheroadtolove
My boyfriend, Sterling McBride, who is moving all the way across country to be with me, set up a GoFundMe page to support our road trip out west in order to start our lives together. Unfortunately, we have not been able to see each other since the first week of January due to us living on opposite sides of the country. We have dealt with many ups and downs, probably more downs than ups in the past few months, but not being able to be together makes those downs that much worse.
We have known each other since 2007 and have been dating on and off, off due to living in separate places, since 2010. Sterling finishes up Grad School at the end of April and then we are meeting at the ARVD Seminar at Johns Hopkins in Baltimore, MD on May 1st. I am drowning in bills, but more specifically Medical Bills. He is drowning in student loans. After an Associate Degree, Two Bachelor Degrees and a Graduate Degree, he will be paying off loans for a very long time.
We have known each other since 2007 and have been dating on and off, off due to living in separate places, since 2010. Sterling finishes up Grad School at the end of April and then we are meeting at the ARVD Seminar at Johns Hopkins in Baltimore, MD on May 1st. I am drowning in bills, but more specifically Medical Bills. He is drowning in student loans. After an Associate Degree, Two Bachelor Degrees and a Graduate Degree, he will be paying off loans for a very long time.
His GoFundMe page was in hopes of raising some spending money for our drive out west to our temporary home in Jackson, WY. After the summer, we will have to move again to Denver, CO which will also break our bank. We are moving so he can begin his career as a high school history teacher and so I can be closer to better medical facilities.
I know I have not posted in a while, but between moving to Jackson in December 2014, being shocked by my ICD in February and having an array of other serious health issues, I just haven't found the time nor the motivation.
I've already filed for Bankruptcy once in 2011 due to me owing over $500,000 in medical bills, and due to my health issues preventing me from finding a decent career, I have been relying on my parents, which for most 28 year olds' is not ideal. This trip is for me and my boyfriend to catch up with each other and experience what the world, more particularly America, has to offer. This is his first road trip and first trip out west and I would like for the both of us to be able to make the most of it.
If anyone can help out in any way, even just a dollar or two, that would be more than amazing. After Baltimore we plan on staying a night outside of Cleveland on one of the Great Lakes, then stopping in Omaha for a night, followed by two nights in Denver and then back to Jackson.
Also, if anyone lives in Denver and will be able to help us in anyway in regards with housing, school district information, and an office administrative job for myself, that would be just as helpful. Travelling is my passion but unfortunately it is also very expensive. My boyfriend is amazing and the love of my life. He evens me out, and as most of you know, I need some evening out.
[Side Note] I have unfortunately put in my resignation at work, which has been the best job that I have ever had, working with the best law firm in Jackson, but unfortunately with all my health flare-ups, and all my doctors being over two hours away and the lack of flexibility at work, I had no option but to resign. Not only that, but Sterling and I will be moving to Denver at the end of July. It's one of the few places that has available teaching positions while also having state of the art medical facilities.
For all you ARVDers out there, I was shocked recently. My first shock since 2011, and my first shock since having my epicardial ablation. I have had extreme and debilitating anxiety accompanied with panic attacks due to the shock. I plan on writing a new post on the health struggles that I have incurred since moving out here to Jackson, WY a few months ago. The last couple months have been extremely hard on myself but will hopefully only get better when I have Sterling, my wonderful and amazing boyfriend, joining me on this journey through life.
Thanks for reading, and thanks for any and all support. And I hope to see some of you up at the Seminar this year.
Much Love,
Kiele Binsted
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