Tricuspid Atresia

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Tricuspid Atresia
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    Welcome! Adult CHD Warriors

    <p>Welcome! Adult <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7200553f33fe990680" data-name="CHD" title="CHD" target="_blank">CHD</a> Warriors</p>
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    Community Voices

    Right now it feels ridiculous. I'm 33. I know that people older than me are at work today, and it feels completely awkward.
    It's nice, but it's going to get lonely quick.
    It's necessary, but it's feeling very over-dramatic.
    It's recommended, even mandated, but super irritating.
    It's letting others care for you when you know you are perfectly capable. (I hate this.)
    Honestly, this is chronic illness though. Isolation. Lonely. Over-dramatic. Irritating...
    It's living with something you can't explain fully.
    It's having restrictions that feel stupid.
    It's trying to remember what you need when you feel like everyone else is judging you.
    It's avoiding a sickness that is no big deal for others, but could ruin your life in one swoop.
    It's a constant anxiety and worry and isolation....
    Isolation is complicated and simple in one.
    Day one has been easy and so, incredibly hard too.
    I'm not a fan, because I'm 33.

    Medically Transitioning as Transgender With a Congenital Heart Defect

    “You’re special,” my doctor reminds me for the umpteenth time after I ask permission to travel abroad, start a new sport, or trying a different medication. “You’re not going to be able to do everything you want.” I shrug and say, “I’m used to it.” And that is the truth. I have come to terms with the complications, lifestyle and barriers my congenital heart defect has handed to me. At a few days old, I was diagnosed with tricuspid atresia, ventricular septal defect, and coarctation of the aorta, which would all require numerous palliative open-heart surgeries. Though I was not old enough to remember the traumatic ordeal of open-heart surgery, the experience lingers within me, reminding me of its presence with unexplainable aches, shortness of breath and dizziness. My adolescence greeted me with a lot of growing pains. I began experiencing chronic chest pain which I became accustomed too rather quickly. There was nothing I could do to change it, so I had to live with it and take pain medication when needed. What really knocked me off guard was the increasing discomfort I felt about my assigned-female body. My self-identity was in turmoil as I tried on multiple different labels, desperate to find anything that fit. I even contemplated that maybe my heart defect was the cause of the detachment I had with my body. However, no explanation satisfied the void until I discovered I was transgender. There was an unknown comfort I felt whenever someone accidentally called me “sir” or “him.” I would tell my friends it didn’t bother me, but the truth is it made me ecstatic. I began wearing a chest binder to achieve a more masculine look. But because I was already short of breath from my condition, I had to wear a size up, which never gave me a completely flat chest, making my dysphoria to worsen. I tried my best with what I was given though and dreamed about the body I would have once I started medically transitioning. What frightened me the most about being transgender was the medical procedures I would have to undergo to feel at peace with myself finally. Though medically transitioning is not for everyone, it was something that I was very interested in, despite my pre-existing complications. “I can give you a referral to an endocrinologist,” my doctor said after I expressed the desire to start testosterone. “But I can’t guarantee they will want to work with you, due to your issues.” I felt my dreams shrink in a second. Never before had been so consciously aware of the real barriers my defect would have on my life. Anxiety enveloped me days leading up to my hormone consultation — then anger. I felt cheated out of fulfillment. To me, it was unfair that I had this congenital heart defect given to me. I knew for sure that I could not live my promised 40 to 60 years in the body that I detested; and if I was unable to change it, I had no idea what I’d do. Up until this point, I had been so passive about my condition. Psychical restrictions never frightened me. I have traveled to exotic and breathtaking places, earned a black belt in karate, and I am still relatively active and fit, despite my condition. I allowed the perception of invincibility to fit snuggly in my mind. Now, it was finally at question, and I was not prepared for it. “We’ll just need approval from your cardiologist,” my endocrinologist chimed with a smile, “and then we can get started!” “Wait, really?” I asked with disbelief. My dreams began to grow again, and I felt the weight of my insecurities fall off of my back. I nearly started crying on the exam table because I just felt so lucky. I imagined everything else is easy from here on out. As it does for everyone, testosterone had some gnarly side effects for me. This included anxiety, restlessness, acne, and headaches. However, none of these have been the result of my heart condition reacting poorly to the hormone replacement therapy, which I felt blessed about. I only take a small dosage of testosterone a week and am under close watch to make sure everything is getting along. As of now, I have been on testosterone for a little over two years, and had top-surgery (double mastectomy and chest masculinization) done just two weeks ago! I feel very blessed to have a fantastic team working with me to achieve the needs of my transition and my heart defect. However, it isn’t going to be easy as I age. Over the last two years, I have been diagnosed with liver fibrosis, a newly discovered and worsening side effect to the life-saving heart surgery I received when I was just 3 years old. A sensitive digestive system and fatigue accompany the fibrosis, which has caused other problems in my life. New issues will keep showing up as I get older, and could complicate my transition. Ideally, I want to be on testosterone for the rest of my life, but my condition may decide otherwise. I have no idea what the future will look like for me. There are so many variables and complications because of my heart defect. I may need a heart transplant; I may not. Some of my organs might fail, or they won’t. Nothing is certain because congenital heart defects like tricuspid atresia are only starting to be understood. The best I can do for now is live the life I want. Just as always, I will not let fear paralyze me from living the way I would like to. The most important lesson I’ve learned from this is that there is always a way to get what I need. I will never settle for anything less.

    Living With Tricuspid Atresia

    I will begin by saying there is no real knowledge of how long I will live, which in some ways is one of the so-called normal things about me. To the boy who asked me this question, I thank you. But I also feel sorry for you. You see, I have lived with an unseen condition my entire life — a condition that affects my heart. To put it simply, I am lucky to be here. In my 20 years on this earth, my life has been filled with many questions, but the most asked question of my life (aside from have I taken my medicine; yes, Mum!), is am I OK? Medically speaking, no. I will never be as healthy as someone without my condition. But for someone with my condition, I am wonderful. I am writing this upon my return from spending three months abroad by myself. Never in my wildest dreams did I think I would ever say that. It was there that I was asked this question. And it was there that I realized that without my condition, I may not be so wonderful. There are many things I cannot do. I cannot get a tattoo or a piercing, I cannot drink alcohol or cranberry juice and I definitely cannot do athletics (I learned that the hard way). But there is one thing I can do, and that is live my life to the fullest. Every single one of us lives our lives on a clock, it’s just that some of us are lucky enough to realize it sooner than others.

    Tricuspid Atresia: I Wear Makeup to Feel Healthy, Not Pretty

    It sounds ridiculous, and as a 30-year-old, I actually feel ridiculous writing about this, but I just have to. I have to because it’s more than just about makeup. It goes deeper — deeper to a different kind of level and a different kind of difficulty that’s associated with people who live with invisible illnesses. All illnesses are hard. What I think is most hard are ones that are invisible. There are illnesses other people have a hard time understanding. They don’t see the constant psychological and physiological struggles people go through day in and day out. I personally live with a few illnesses myself, including on and off depression and anxiety and the biggest one is my rare heart condition, tricuspid atresia. On the outside, I look completely “normal.” To others, I look completely, healthy and happy. But if you wipe away the makeup I put on almost every morning and that pretty pink blush I almost never leave the house without on my cheeks, I look sick, tired and like there’s something wrong with me. I know a lot of woman who joke about how they look “tired” without their makeup on, but it’s different with people who are actually constantly tired and are sick. It’s that depressing “I don’t feel good about myself, I don’t feel pretty today” feeling and taking it a few notches deeper. Without it on, it’s more of a realization and reminder that I am sick. During my 10-day hospital stay after my last open heart surgery (the fourth one I’ve had), I could barely walk five feet without being out of breath two days in. But before I would even have considered getting up to do my “daily” walks I had to do that one thing first: Put on my makeup. I’m sure I looked pretty ridiculous — a 25-year-old woman who just had major open-heart surgery — and here I was concerned about what I looked like. Most people might chalk it up to being superficial, but it wasn’t that and it never has been about that. It was and is about feeling healthy, even though I’m not healthy. When I meet people for the first time and they hear I have a heart disease (and that I’ve had four open-heart surgeries, two ablations, countless other surgeries and, oh yeah, I also have a pacemaker), I usually get the same type of look. It’s a look of shock and confusion. Most people’s responses are almost always the same: “Wow, but you look so healthy!” Well, yes, I do! I look so healthy, and what’s even better is the magic potion I put on my face makes me feel healthy and normal, too! I feel a certain sense of pride when people tell me they would’ve never guessed I had a heart problem. That’s because I’m reminded of my dad’s advice to me growing up with this heart disease: “Just live your life as normally as you can.” I never really understood the significance of his advice, but over the years now, I get it and it’s because acting normal — or, in my case, trying to look healthy — is the foundation of feeling normal and healthy, too. And so, because I love looking and feeling so normal and healthy, despite what my medical records may tell you, I will continue to wear my makeup and the blush I can’t go a day without, no matter how ridiculous and superficial people might think I am. Because even if people know some of your life story, you don’t ever need anyone’s approval, whether your face is beautifully natural or beautifully “makeupfied.” We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

    Choosing to Have Children Despite My Tricuspid Atresia

    Over the summer I went to my first writers workshop. While talking to a fellow writer, a woman around my same age, an author who wrote children’s books, we got to chatting and asking each other the typical get-to-know-you questions. But when you’re at a writing conference it usually starts with, “So what do you write?” I answered shyly, still uncomfortable with this question. What do I write about? How can I put it into words? I don’t have a particular genre. And then the corniness came out: “I just like to write about inspirational things. Sometimes it’s people I have met and learned from, people who have inspired me; or sometimes it’s my own personal experiences. But eventually my goal is to write a memoir.” She looked at me with surprise, the usual surprise I get from people when I tell people this is my ultimate life goal. I usually guess what the person is thinking when I tell them this: “Of course, some young 30-year-old wants to write a memoir about her life. How cliché. I mean really what has she gone through at the age of 30, that she wants to write a whole book about it?” “Oh, really?” she continued. “What about?” “I have a heart disease, I have outlived doctors’ expectations and continue to year after year,” I said. “I want to write about it in hopes to inspire other heart disease survivors or I hope I can provide some hope to mothers and fathers who have children living with little prognosis.” “Oh, wow, that’s awesome!” she said. “I couldn’t imagine living with a weight like that.” Up until that point I never had the right words, but she had nailed it. That “weight” was a true weight. Survivors guilt is a real thing, and being constantly reminding (especially every six months at my cardiology checkups) that I’m doing so well, especially for only having half of a working heart, is a remarkable thing. So the weight I feel is the constant pressure I put on myself to do better, to be better,and I am constantly trying to find my purpose. Sometimes people searchtheir whole lives to find their purpose, but the pressure I have to find mine before it’s “too late” is an anxious pressure. “So what is your disease called?” I gave her the quick non-sob story about my four open heart surgeries, my pacemaker and living with my heart disease, tricuspid atresia. What came nextwas the first time in my life I had every reason to cry, but somehow, in some miraculous not-myself way, I kept my shit together. Me, someone who could cry at the site of a dead cat in the middle of the road, didn’t cry at this. “So do you have any kids?” she asked. “No,” I said. “Well that’s good,” she responded. Wait, wait… what did she just say to me? Well that’s good? Good that we don’t have any kids? What did she mean? I wanted to scream, reach across the picnic table we had been sitting at and pull one of her perfectly curled hairs out. What did she mean by “that’s good”? Like we shouldn’t have kids because I have a serious heart disease? Like I shouldn’t try to live my life as normally as possible, like I shouldn’t still do the things I want to do (like become a mother) because I was born with a disease that makes my life expectancy less than hers? I shot back at her without hesitation: “No kids… well not yet anyways. We’re actually going to be going through surrogacy soon; I can’t safely carry my own child.” I stopped for a brief second and imagined her inserting her petite foot in her own mouth. She looked at me with surprise. “Oh, really?” She continued to ask even more questions about this. I was actually happy to answer all of them. “Because of my heart disease, my doctors don’t think it’s a safe idea to carry my own, so instead of putting myself and our baby in danger; we decided to go this route.” Since this conversation happened a few months ago, I reflect on it almost daily. It bothers me more than it should, but I am also thankful for it in the most ironic way. I’ll never understand how people can assume such things, why someone might assume that just because of my heart disease I wouldn’t have my own children. I may never understand how people can have such judgment and opinions on a person’s situation, but I am grateful for that day and for that conversation. Yes, I have aheart disease, and yes, choosing and deciding to have children living with a sooner-than-desired “expiration date” is hard, but what would be harder is not living out my dreams because of my heart disease. My hope for anyone and everyone living with unthinkable, disheartening and life-shattering sadness like the sadness and the realization that your life is going to be coming to an end, or that your life might be shorter than you thought, shorter than you want, my hope is that those people keep living… and keep living like you don’t give a shit, like you don’t give a shit that people are surprised you’re doing the things you’re doing knowing you might be dead soon. Keep surprising all those people. It’s important for everyone in this world to hold on to the hope in their hearts, but for the people living with shortened life expectancies, living with unbeatable odds, it’s important for us to keep going after what we want in life. After all, that is what keeps us alive. We want to hear your story. Become a Mighty contributor here . Photo by Tharakorn

    Christina 'Mouse' Jennings on Being Confident With Chest Scars

    Christina ‘Mouse’ Jennings has no problem showing her scars if that means it will help others. Jennings was born with a rare congenital heart disease known as tricuspid atresia. Since then, the 30-year-old has had four open heart surgeries, the last of which left her with a pacemaker protruding out from her abdomen. “My biggest scar, from the top of my neck to my belly button, has been there since my first open heart surgery when I was 5 months old,” she said. Jennings also has a large scar on her abdomen from a feeding tube she had as a baby, scars from where her pacemaker is in her abdomen, a large scar on her shoulder blade, and small circular scars on her chest from chest tubes. Since Jennings, a revenue analyst at the University of Iowa Hospital, has grown up with her scars, she feels comfortable showing them. “I am proud of the all of the large scars that are especially noticeable in a swimsuit,” she said. “[My scars] show people who I am and are a glimpse into my life story.” While Jennings feels comfortable in her skin, she does wish she were more toned. She’s tried training with her husband, a personal trainer, but that hasn’t always worked out well for the couple. “Trying to have my husband ‘train’ me was difficult,” Jennings said. “I am a bit sassy sometimes, especially if I am doing something I don’t like to do. So when my husband tries giving me instructions and is in the position to be able to ‘tell me what to do’ – like how to lift the weights, what weights to lift – it doesn’t go over very well.” There are certain exercises Jennings can’t do, like lifting heavy weights above her chest. “My pacemaker I have is also located in my belly which makes certain exercises like doing sit ups and squats uncomfortable for me,” Jennings explained. Growing up with what she calls “fairly good confidence about her scars,” Jennings wants to help other young women and girls with heart disease. “I want to inspire other young girls with heart surgery scars,” she said. “[To do] so I must be comfortable in my own skin and about my own scars. I shouldn’t be ashamed of what I look like and the life I’m fighting for.” Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines Next: Tristen Wuori, on Going to the Beach in the Summer With Lupus

    Learning to Cope After Surgery for Tricuspid Atresia

    Christina. Something amazing and scary happened four years ago. I faced death and I kicked its butt. Actually I’ve been kicking life’s butt ever since I was a baby, when I was born with a rare congenital heart disease known as tricuspid atresia. But, the butt-kicking four years ago is my favorite. I’ve had a ton of surgeries in my lifetime (and, by tons I mean if I counted them on my fingers it would take both hands). Although I’ve had a lot of surgeries, the one four years ago was my first one as an adult. It was a serious, life threatening surgery; my fourth open heart procedure. It was the first time that I would sign away my life to the doctors. It was the first time I would draw up a will — with a lawyer I had never met before. I barely understood what I was signing, but I signed it. I stated my wishes: what I wanted my death to look like if it got to that point. Yes, please resuscitate me, but no don’t let me live like a vegetable.  I learned that life and death is confusing. It was the first time I truly understood the magnitude of my heart disease, a disease that has no cure. So, four years ago I went through a terrible and painful surgery. They cut out a piece of dead tissue from my heart because it was no longer functioning. My body was working extra hard to pump blood into an area of my heart that could no longer handle the blood. I also got a pacemaker implanted. A “precautionary” pacemaker — not because I needed one at the time but, because I may need one in the future. What better time to do it than at the age of twenty-five when they were already ripping me open? So the surgery happened, and it was painful, horrifying, maddening, spiritual and life-changing all at once. Most importantly, it was life-changing. I’ve been told that I’ve changed since that last surgery. Sometimes when people say “change,” the immediate reaction is a negative one. But change isn’t always negative; it may just mean that you’re growing. I have no doubt that I have changed. I know for certain that I have. But the surgery itself isn’t what changed me; it was the experience that changed me forever. It was the experience that awakened me to life in a new way. In the last four years I have felt over and over that someone has been shaking me. “Get up, live your life, and live it the way you want to live it.” In these past four years I have done things that have changed my life. I broke up with a terrible, manipulative boyfriend. I finally let go of someone I loved for years. I quit a job where I was no longer happy and had me drinking almost every night. But, most happily, I found the love of my life and I married the love of my life. I started a dream job at the very hospital, The University of Iowa Hospital, that changed and saved my life four years ago. I’ve changed and I live differently now. I say what’s on my mind a lot more. I book myself to the max. I’m always busy because I try to see everyone who is important to me, just in case I die tomorrow. Sometimes I think irrationally because when death is on your mind constantly, it can eat at you. It brings every second of my life to the forefront and forces me to look at it constantly. A life or death experience is life-changing. And with it comes even more life-changing things happen. That is the truly amazing thing! I say to my husband often,“Dear, do you think I’m dying?” And, his sweet patient, self always responds the same way: “ Dear, we’re all dying.” It’s the most perfect, and reassuring response he could ever say. And, he’s right; we are all dying. You are dying just like I am dying. I may think about it more than is healthy (roughly at least ten times a day, seriously). Most of us think about death when we see someone who is sick or when someone dies. We think of it when we get sick ourselves, when we face a surgery or face some other crisis situation. But it is the same for everyone; we are all dying. So, say “yes” when you mean it and “no” when you don’t want to do it. Dance on the bar when your feeling the urge, and stay home when all you want to do is cuddle with your dog. Say what’s on your mind and do what you want to do. If you are doing things from a place of kindness and happiness then you are probably living your best life. Just do whatever it is that will bring you happiness and if you can make other people around you happy too, then that is a bonus. You know what is good for you and your happiness, so try to avoid letting other people tell you how to live your full life. Dig deep. And most importantly, say what you need to say. Let your heart open up and explode. If there is anything I have learned in these recent years and living with a congenital heart disease, it’s that life changes you and people change you. So, embrace the changes. Embrace that person you are today and not the person you were a year ago or five years ago. Live your experiences, grow from them and let them change you. No one will ever continue to be the same person. We are surrounded by so many opinions and those willing to give us advice and suggestions on how we should live our lives. I recently came across a quote that I feel addresses this: “The most beautiful person is the person that is true to themselves.” I fee this is the only piece of advice we need and the only one that matters. Follow this journey on Peaces of My Heart The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.