Help Fund a Heart Transplant
August 1, 2015 is the day that Sterling and I moved from Jackson, WY to Denver, CO to start an extraordinary life together. Four years later to the day we officially moved to Raleigh while I also had my first cardiac appointment with the Duke team. What a long stormy and exhausting day we had. My heart failure specialist, Dr. Stuart Russell, is amazing and I feel very comfortable putting my life in his hands. He had a long career at Johns Hopkins, where my ARVC team is, which he worked very closely with before moving down to NC two years ago. So not only is he an incredible HF specialist, he is more familiar with ARVC than most and he knows and communicates with my doctors in Baltimore.
Sadly, the news is not what we were hoping for. Dr. Russell informed us that to have any chance at a productive and more meaningful life is to be placed on the transplant list. As he kept reminding Sterling and myself, "I'm good for nothing." He's not wrong. This was said in a light manner, but it was stated multiple times and it's true, it's just something we have never allowed ourselves to admit or even speak aloud.
Many people who do not know me or even hear a brief synopsis of what's going on laugh when I say I'm too old for this or that. Yes, I'm only 32. However, living a life of a typical 32 year old is nearly impossible with a heart that does not function correctly, with energy levels that are comparable of someone who is 3x my age. This is why I chose to fly home while Sterling and Adam drove our belongings across country. I'm able to put on a pretty good front for most, I go out when I can, I socialize when I can, but every time is a struggle and behind the smile is pain and agony.
It hurts me that I'm not able to hang out with Sterling, his sister (Taliyah), and my brother (Adam) while we are all in Raleigh. I find myself writing this while they are out drinking beer and eating pizza. I hate to miss out on those kinds of moments, I hate that my energy drags other people down, I hate that my energy drags me down, I hate that I never feel good, and I hate that there is seemingly always something to complain, bitch, and moan about.
Dr. Russell knows that I can't do anything nor does he want me to try to do more than I currently am. No exercise, no salt, no work. And even though my latest test results came back normal from the Right Heart Cath, which perplexed my Denver doctor who had given us a great deal of hope that things would be ok, Dr. Russell believes those results would be terrible if the test was taken while I was standing up and moving, however that's not a possibility. He stated that 10 years ago he would have thought to let me continue on until I was permanently hospitalized. After years of studies and experience he thinks placing me on the transplant list will hopefully make the transition of getting a new heart easier as we'll be more prepared and hopefully not too sick making for a quicker recovery.
I will finish my complete body examination by the end of August which will require a multitude of tests. As long as I don't have any signs of cancer and Medicare will pay for my new heart, I will be going on the list. I will then have multiple and frequent appointments with all sorts of doctors to be informed of the transplant from every angle by talking with the surgeon, therapist, finance counselor, nurses, etc. I could be on the list for up to two years. Dr. Russell would rather me go through the process this way rather than suffering from increased arrhythmias, ICD shocks, more extreme fatigue, increased shortness of breath and even water retention. Of course if I do get any worse in the meantime he can always expedite the urgency.
I am not able to process this news quite yet, I'm in denial, I'm stressed, I'm anxious, and I'm exhausted. The ongoing discussion of a heart transplant has been "maybe you need one, maybe you don't." This is the first time it has been said that in fact, yes, you need a transplant and we are starting this process now.
I've never known a life with a working heart so it is impossible to even comprehend what that life can hold. The first year of a transplant is very precarious and there is no guarantee it will work, or that you will get a good heart, or that your body will accept it, or that you won't get deathly ill. The average life span is roughly 15 years so that is something else that is mind boggling. Overwhelming is an understatement.
Currently words are hard to find, emotions are raw and ever changing, and stress is through the roof. This is going to be a long expensive journey and I know many of you have donated funds to help Sterling and I out during this life changing experience and we can not thank you enough. Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart. If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain. I love you all and always appreciate your love and support. gofundme.com/kiele
P.S. If anyone knows of someone renting out a house in the Raleigh area, we'd love to hear from you. We're trying to get out of condos/apts to have more privacy that a house would offer while we go through this trying time.
Friday, August 2, 2019
Friday, June 21, 2019
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!
Gofundme.com/kiele
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
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.
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