Let me explain what being on a transplant list is like. This is not to discuss my feelings in regards to heart failure and needing a new heart, that's for a later post that I can't seem to put together.
This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved. While on a transplant list, you are always on call, similar to a doctor. I could receive THE call, the you have a new heart call, literally any day at any time. I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.
Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in. That could be THE call. How do you prepare for that? How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years? The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.
To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well. All of our lives will be changed, not just mine, for better or for worse. Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent. Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school. He's afraid we'll get the call and we won't be able to get a hold of him. We're currently just tiptoeing through life.
This process is and will continue to take a toll on us, financially, physically, but more importantly mentally. We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental. We bought a fire pit and a grill and trying our best to relax our bodies when we can. However, that is not to say that it doesn't cross our mind daily. Asking ourselves if we are ready. Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning. Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process. That is for a much later post.
One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me. It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading! Much Love.
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
Thursday, November 14, 2019
Saturday, September 14, 2019
Heart Transplant Evaluation
My transplant evaluation was originally scheduled for 4 days, to our surprise they were able to cancel day 4 being that the only appointment scheduled was a heart cath which i had completed back in June. That was the good news, might go as far and say the only good news of the week.
I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3. We started the day with a lengthy blood draw followed by a 2 hour transplant class. The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery. Most of the information we were familiar with although we did learn about how patients are classified once listed. If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case. They made it sound as if this was the most important meeting of the week.
As for Day 2 & 3, I barely made it out of the car at the end of the day. Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician. My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs. How?...well that's the question. See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes. Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds. She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating. She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that. The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together. I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc. I walked away from that meeting feeling positive about achieving that goal.
Fast forward to Day 3, the most extensive and exhausting of them all. I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly. After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET. I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately. I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down. I literally had no use of my muscles, even in my hands. After about another 10 minutes my body finally started to return to normal. The results? Well not what we were expecting. My max VO2 dropped from 11.3 to 10.3 within 3 months time. We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation. That was not the case. Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.
After all the testing, the plan was to meet the surgeon and then my transplant coordinator. The surgeon was...well a surgeon. He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker. I'm sure he is a damn good surgeon just not great with people. We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well. There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list. And if they do decide to list me, more than likely I will fall into the bottom status, Status 6. This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent.
So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened. She had something come up. We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this. Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case. This caused frustration and stress and a feeling of just being another number. I am supposed to hear from her by the end of next week. The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be. I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.
This was a very hard week physically and emotionally. The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.
I'm not sure what will be next or what to expect. I'm too exhausted to think about anything anyways so we will wait until Thursday. Thanks for the continued love and support. Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect. I will update you all when I hear something. Help Fund My Transplant Process
I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3. We started the day with a lengthy blood draw followed by a 2 hour transplant class. The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery. Most of the information we were familiar with although we did learn about how patients are classified once listed. If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case. They made it sound as if this was the most important meeting of the week.
As for Day 2 & 3, I barely made it out of the car at the end of the day. Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician. My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs. How?...well that's the question. See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes. Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds. She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating. She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that. The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together. I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc. I walked away from that meeting feeling positive about achieving that goal.
Fast forward to Day 3, the most extensive and exhausting of them all. I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly. After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET. I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately. I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down. I literally had no use of my muscles, even in my hands. After about another 10 minutes my body finally started to return to normal. The results? Well not what we were expecting. My max VO2 dropped from 11.3 to 10.3 within 3 months time. We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation. That was not the case. Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.
After all the testing, the plan was to meet the surgeon and then my transplant coordinator. The surgeon was...well a surgeon. He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker. I'm sure he is a damn good surgeon just not great with people. We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well. There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list. And if they do decide to list me, more than likely I will fall into the bottom status, Status 6. This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent.
So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened. She had something come up. We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this. Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case. This caused frustration and stress and a feeling of just being another number. I am supposed to hear from her by the end of next week. The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be. I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.
This was a very hard week physically and emotionally. The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.
I'm not sure what will be next or what to expect. I'm too exhausted to think about anything anyways so we will wait until Thursday. Thanks for the continued love and support. Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect. I will update you all when I hear something. Help Fund My Transplant Process
Friday, August 2, 2019
Good for Nothing
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.
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, 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
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