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Doomed since birth


#1

Fair warning: This is going to be a tl;dr post. I just have a LOT of things I’ve gone through in life and continue/will continue to go through. I’ve never put my life story out into the public before or really talked to anyone about it. My medical history thus far: Born with a unicuspid aortic valve with severe aortic stenosis.This heart defect typically doesn’t present in people until their 30s or 40s; even then it’s only 0.02% of the population that develops it, so 200/1,000,000. I was born with it, so the odds are even more rare. I was monitored closely up until the age of 11 when I had my first heart procedure, a balloon angiogram. They went in through my femoral artery and inflated my aorta; still confused on how it stayed open but mission accomplished. Having one cusp instead of the normal 3 plus stenosis of the valve only allowed me to receive around 30% of the amount of oxygen as someone with a normal heart. The next year rolled around and I had to have another balloon angiogram. It was a success. At the age of 15, it was time for the next one, however, this one was unsuccessful. Now it was time for open-heart surgery. I had what is referred to as the Ross Procedure. The affected aortic valve is removed, my pulmonary valve was removed and sewn into the aortic valve position and a cadaver’s valve sewn into the pulmonic valve’s position. I was 16 when I had this surgery. During the surgery (lasted 11 hours), I had an aneurysm (which they classified as a heart attack) in an artery that they had to completely block off. While in recovery in the NICU, my liver and kidneys failed. I was in the hospital for 5 weeks. Things were pretty great after that, up until the age of 21 when I developed atrial fibrillation and supraventricular tachycardia. A procedure was done called an ablation that ultimately failed, thus causing them to implant an AICD (automatic implantable cardioverter-defibrillator, ie. pacemaker/defibrillator). I lasted from then (2005) until 2013 until my first episode. I was defibrillated 13 times in 8min, all while being awake and fully alert. I thought I was going to die. I was scared, but ready. I just wanted all of my medical issues to end. The PTSD/anxiety from that lasted around a year. In January 2014, I had to go in and have a new device put in. While in the hospital recovering, my grandmother was brought in. I got out, she didn’t. She ended up dying about two weeks later, but not before my uncle died due to the stress of my grandmother falling ill. I lost my uncle and grandmother 13 days apart. Fast forward to 2015. My mother died 10/25, one of my best friends of 18 years died 11/19 and my father (who went into the hospital the morning after my mother’s funeral) died 12/18. I lost 3 people in less than two months. June 30, 2016 I had my next episode with my device. I was going in and out of AFib/Vtach, heart rate 260bpm, being defibrillated 17 times in around 10min. The EMT’s had to sedate me and externally defibrillate. Since then, I have had uncontrollable PTSD, anxiety and depression. I’ve battled opiate addiction due to chronic back pain (I got sober by myself August of this year). I now have hypothyroidism which has caused me to gain 60lbs in 9 months. I’ve always been big because of my heart issues. I couldn’t do things everyone else could do, like sports, running, even walking much. I’ve been suicidal since the age of 15. On the plus side, when I had my open-heart surgery at the age of 16, I was told I’d need the next one in 10 years; we’re almost 10 years past that mark now. But the time is coming sooner rather than later. I’ve been given a 25-30% chance of survival, and that’s just for the surgery. No way to tell how recovery and how the long-term effects will be. They won’t do a full heart transplant. The hypothyroidism medication affects my heart so I’m on the lowest dose possible. It’s keeping the majority of the symptoms at bay but can’t help with the weight gain. I used to weigh 320lb in 2014. I worked hard (and by that, I mean not eating/eating VERY little) to drop to 185lb in March of this year. I spent $6000 on a new wardrobe and was extremely happy. Then the weight started coming back because of the under active thyroid. I’ve consulted with my primary, my endocrinologist, two registered dieticians… nothing is working. Between that, my heart, the inevitable weight gain, the fact that I only have one family member alive (an aunt), no friends, never had a girlfriend, 35 year old virgin, etc. I’ve decided that when the time comes I’m not going to go through with the surgery and just end my life on my own terms. I’m not afraid of death, I’m afraid of the pain leading up to it. If I were to die during surgery, I’d be fine with that. I wouldn’t be fine with being at home recovering and having an aortic aneurysm/heart attack, etc. Regarding my PTSD; I’m overly obsessed with my heart rate and heart rhythm. I have irregular heart rhythms all throughout the day. I have elevated heart rate all throughout the day. At any moment I could be defibrillated. I just can’t get that out of my head. The only thing that will cure my PTSD is having the device removed but it can’t be because without it I would have died twice already. It’s a lose/win/lose. My PTSD/anxiety is so bad I just showered for the first time in over a month. I literally sit in my computer chair 16 hours a day, minus getting up to go to the bathroom/get food water, etc. I’ve tried depression medication but it messes with my heart so I avoid it. I’ve been to 3 therapists that all said (after months of sessions) that they couldn’t help me. I’m too stubborn/strong willed I guess. You want my PTSD/anxiety to go away? Give me a new heart with the promise that I’ll recover and live to my 80s. At this point I’m planning on dying or ending my life by 40. I already have my will, power of attorney and medical power of attorney in place. I feel like I just wake up to the same shit every day and it just never ends. Nothing good ever comes my way. I have some days that are better than others, like days where I can actually shower and do laundry, etc. but even then my heart rate gets super high and won’t drop for 5-7 hours so I’m stuck in a constant state of PTSD/anxiety. I take diazepam daily for anxiety but it doesn’t help. I have xanax for when it gets bad but it doesn’t help either. Ok, I’ve typed enough. I doubt anyone will actually read and comprehend all of this. Just wanted to vent I guess. I would love to be able to look through other threads and try to offer words of encouragement, but I’m in no position to do that at the moment. Whoever reads all of this and/or replies, I appreciate it. Have a good one. - Sullly


#2

Hi there Sully, thank you so much for reaching out and sharing. It takes a lot for one to do this and you did. That’s really great man. I’m glad you did!
It seems you’ve been through so much. I’m so sorry to hear about the passings that you have experienced. i can only imagine how hard that is. But friend you are not and never will be better off dead. There is a reason that you’re here on this earth. i know it can be hard to see sometimes, but there can be redemption and beauty brought out of our greatest sufferings. idk if you believe this or not, but when i turn over the worse parts of me to God, He always finds a way to make it into something beautiful. It doesnt always feel good all the time, but He does. He knows and understands your pain.
Honestly friend, the world is a better place with you in it. You may feel worthless, but you’re not. You are SO WORTHY of love. There is so much more in store for you. I promise, God has so much for you. i don’t know if suffering will end or go away anytime soon, but i know that great hope and light can spring forth from it, if we allow that to happen.
There is so much more ahead. Growing takes time. Learning to grow and see the beauty in our suffering takes time, but it’s a matter worth pursuing. Everything will be okay. Things will get better. There is life and there is Love, aching to pour out in your life.


#3

Hi, ness. Thank you for reading my short story :slight_smile: I apologize for not paragraphing - kinda just wanted to get it all out, so sorry for the wall of text. Maybe this is just an excuse I’ve made up to prevent myself from believing, but I double majored in Biochemistry and Computer Science. I’m very left-brained and a scientist at heart. I believe what can be proven; it is hard for me to have faith in something that cannot. I desperately want to believe in God; I actually feel bad that I don’t. I feel like a loner, like I’m the odd one out. I wish I could be like most others and believe and have faith. I’ve tried but faith is something that can’t be forced. I do pray multiple times a week; sometimes to God, sometimes to my parents/family, but I think it’s just me wanting to talk to someone and my way of making it feel as if I’m not just talking to myself. I have to be honest with you - everything you’ve said, people have been telling me my whole life (or at least since I became depressed at the age of 15-16). They always say things will get better, that my life will turn around, that I will meet someone, etc. Things have just progressively gotten worse. I’ve lowered my guard and tried to embrace what little life I can live but I just don’t enjoy things much anymore. Sure, there are things that I enjoy doing, but that’s from home. I’m pretty much stuck at home, all day, every day. I can go driving and go into the gas station, etc., but actually getting out and walking around, doing any kind of activity, my heart just isn’t up to it anymore yet my doctors say “it isn’t time for your surgery yet.” I think they’re actually waiting for me to start dying/be hospitalized to make the decision. I have no idea what they’re waiting on and why. They know I’m struggling, they know I sit in a chair for 16 hours a day. This is no way to live and when your doctors won’t help, who will? God can’t cure me. I was cursed at birth. Maybe He did this to me to make an example to people; “See how messed up I made this guy? Look and see how far he goes in life.” Something to that affect. Anyway, I’ve just had this cloud over my head for the past 2-3 years or so that I don’t have much time left and I refuse to die going into cardiac arrest/having a heart attack (which I’m assured I’m really not at risk for) so I have my licensed concealed carry sidearm by me at all times. I’d rather end it quick and not deal with the fear and pain. Then, as I said in the original post, possibly live and have to deal with the fear, anxiety and PTSD that comes with that. I’ve talked to many other cardiac patients and none are like me. Most just live their lives and I envy them so much. I can’t find the faith and happiness they have. Sure, I bet in the back of their minds they think about it but they don’t let it control them like I do. Okay, I’m done with this second wall of text. Thanks to anyone who reads all of this :slight_smile: