Truncus Arteriosus

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Truncus Arteriosus
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    My daughter is 16months old and has truncus arteriosus type 1 and a serious leaking heart valve she will need 7 open heart surgery’s and my depression

    and anxiety are making life so hard, her first surgery was at 1 week old open heart surgery and second in September, I also have an 11yr old son. I’m a mess and my husband doesn’t talk about anything with me just basically thinks I’m a waste of space as he says when he comes in from the pub. I don’t go out as I panic and worry. I’m on antidepressants at the moment and am seeing doctor today but I’m feeling lost, lonely and just worthless I don’t see how I can get through all the other operations she’s got to have and carry on. Any advice please xxx

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    Battling Depression and Truncus Arteriosus, a Congenital Heart Defect

    The diagram of the human heart in a medical textbook depicts a colored labyrinth. Follow the maze of red sections, blue sections, black labels, black arrows, atria, arteries, aorta, veins, ventricles, valves. The organized design of this complex but perfect machine is immaculate. Its process is simple, really: a human muscle acts as a pump. Yet my heart refuses to conform to the image in the medical textbook. My heart is the deviant child who scribbles outside a coloring book’s solid, black lines. My heart is a contradiction and has a distinct way of defining me. I am a statistic. I am one in 100 live births with a congenital heart defect. I am one in 33,000 lives births with truncus arteriosus.   I am a pre-existing condition. To stabilize my heart, I’ve needed two open-heart surgeries (one at 4 days old and one at the age of 12) which provided me with infant and adult conduits respectively. Before the age of 13, I required the following procedures: one stent, two balloon angioplasties and four catheterizations. At 25, I had my third open heart surgery, which replaced a malformed aortic valve with a mechanical one. I am a patient. My medical alert necklace is the jewelry that never comes off. My evening “cocktail” consists of aspirin, blood thinners and blood pressure medication. Each week, I need to test my blood’s clotting factor with a finger stick. Before dental work, I require antibiotics, and prior to outpatient surgery, I must wean on and off blood thinners. I see a primary care physician annually, a cardiologist annually and a psychologist monthly. When I tell inquiring minds about my heart problem, they are often confused or skeptical as to why I include a psychologist as part of my health care check up regimen. I point out both my congenital heart defect and my depression are chronic conditions, and the two are not as unrelated as one might think. A recent study by Boston Children’s Hospital released in July 2017 shows a correlation between congenital heart defects and symptoms of depression and anxiety. What the study does not address is a practical application: how these symptoms affect activities of daily living for a heart patient. My depression symptoms start to show up when I spiral downward. Eating a healthy diet, keeping a fitness routine, getting an adequate amount of sleep and taking necessary medication are all on my checklist of daily tasks to maintain a healthy heart. If any one of these tasks seems like a burden, I know I need to seek help. However, being a strong, independent fighter like most heart patients are, this is easier said than done. If my depression symptoms go unchecked for too long, the next manifestation is emotional exhaustion from constantly pretending I am fine even when I am really not OK. My buffer for feeling anything is staying overcommitted to everything. Being constantly occupied allows me to exhibit a sense of command over a condition that seems out of my control. The final step is threefold: dejected apathy gets compressed, built-up frustration compounds and an irritable outburst explodes like the spray from a shaken soda bottle. Therapy helps build up an armor against this irrational thought cycle. My uncontrolled anger gets channelled into a quiet strength that heals rather than harms. Professional counseling once a month works for me, but I also get daily emotional support in other ways from my gym, my church, my friends and my family. The communities I belong to don’t see me as a statistic, a pre-existing condition or a patient. They see me as a warrior, and I am loved for my identity. My own body will always be my greatest enemy, yet my greatest defense is the love I exhibit and receive. Any cardiologist will tell you a heartbeat sustains life, yet I have learned that without love, the jagged line moving across the heart monitor might as well be stationary. Love is the pulse. The syncopated rhythm serves as the tie to a universal beat that binds us all equally despite the different struggles we face. Not all battle scars may be visible, nor are all war stories the same; yet everyone is fighting a hard battle, and it is a fight worth winning together. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via ismagilov.

    Betts Keating

    Meeting a Baby With Same Truncus Arteriosis Diagnosis as My Daughter

    “Just parked in the garage, heading to lobby now,” I typed on my phone before I hit send. “Do you know where the heart ward is?” came the reply. “I think I can find it…” I sent back. That may have been the biggest understatement I have ever typed. Asking me if I know where the heart ward is located is like asking me if I know how to breathe. I had been there so many times I could probably make it there blindfolded. Yes, I know where the heart ward is. I know it all too well. Just acknowledging that fact reminded me of my tender emotional “state.” Part of me couldn’t believe I was choosing to make this visit. The mere act of driving into the parking garage had already seemed strange. For the first time in a long time, I was arriving at this hospital alone. Normally, I have my daughter with me. She’s the reason I come here, the reason I already know that the babies with special hearts all hang out on the heart floor. I had already glanced over to the passenger seat multiple times, only to find it empty. The emptiness of that seat felt unsettling, but was actually a good thing. Not to mention how amazing it is to me that my daughter has grown enough to sit up front, but also that I couldn’t quite wrap my head, nor my emotions, around the fact that she was at school, where she should be, and not here with me at the hospital. Although it might sound strange, I was actually relieved she wasn’t with me. For once, I was not at the hospital for another procedure to maintain my daughter’s health. This time I came because I had another motive. Today, I came to meet Noah. Amazingly enough, Noah is the first baby I have met, in person, who has exactly the same kind of congenital heart defect as my daughter. That’s because they both have an unusually rare form of CHD. It’s called truncus arteriosus. Yes, it’s a bit of a mouthful. It’s equally hard to say as it is to understand, even for those of us who know more about it. As my daughter often says, “Will I ever meet someone just like me?” Chances are not often. Chances are, almost never. That’s what made today so special. And that’s why, against all odds, I was going back to the heart ward, voluntarily. As I entered the garage elevator, I paused to take a breath. It never ceases to surprise me how much a trip to the hospital affects me. Just when I think I have it all together, I quickly find that I don’t. I have to “adjust” every single time I walk into this building. I have to remind myself again that I can get through this. I don’t always want to, but today I needed to, because today was about Noah and not about me. By the time I had navigated through the maze of hallways and ridden a second elevator to the correct floor of the hospital, I had gathered myself enough to walk down the hall toward the heart ward. Or at least I thought I had. That all changed the moment I pushed the buzzer for admittance and waited while I watched the painstakingly slow, double doors open. Each excruciating second that passed felt like an hour. Perhaps that was a good thing. It gave me yet another attempt at composure, a moment to think. Five years ago was the last time I walked down these halls. Like I said before, my daughter and I had come back to this hospital for multiple procedures, but the only reason we would ever come to this particular floor was after something big that required a long stay. I was so grateful to realize it had been five years since my daughter had endured anything that involved. I rested inside another huge sigh of relief… and then continued to wait for the doors to finally grant me admittance. When the heart ward finally came into full view, I was struck by the fact that while everything before me had subtly changed it had, at the same time, stayed exactly the same. The doorknobs were the same. The handrail was still in the same place. The windows still looked out at the same vista. The floor had the same tile. Everything looked just like I had left it five years ago except for the walls. They had that fresh, newly painted look to them. Unfortunately, the fresh paint couldn’t cover up the smell. The smell that will always be indefinably the same. It’s the smell of longevity and endurance and it is unique to those floors in a hospital that hold on to their patients. After my daughter’s first heart surgery she was in a ward like this for eight weeks. Some get released after only five days. Some stay even longer. The nurses at the station in the middle of the floor had different faces, but thankfully still wore familiar scrubs. In a way, it was comforting the scrubs at least had stayed the same. It brought recognition to strangers. “Can I help you?” one of the nurses asked. “Room 421?” I answered, pretending that I didn’t know which way to go rather than stumble my way through a monologue of reasons why I already knew where the room was located. “That way,” she answered and pointed down the hall. I walked in the direction she had pointed, but I struggled to make my feet move. I was stuck in an internal, emotional debate over where I was and where I should be. I wanted to be comfortable being in this hallway, but I wasn’t. I wanted to keep my former experience separate from this moment, but I couldn’t. I wanted to put it all behind me so I could be supportive for someone else, but it was difficult. More difficult than I expected. Unfortunately, it was too late to change my mind. Even my slowly moving legs had propelled me forward enough to make it to the correct door. It was time. As I walked into the room, the memories crashed over me in a flood of flashbacks. I was transported back to a time that seemed like only yesterday. I remembered everything. I had been here before. I had been in a room just like this before. This room designed to fit a crib, a couch that folds into what some would like to call a bed, a reclining chair, a sink, a small closet, and medical equipment. It was all out of balance and it temporarily threw me off my purpose. Then, I saw Noah. And I remembered why I was there. It was like the clouds parted and a ray of sun burst through. This was it. This was the moment. This was my chance to move beyond the pain and the fear. I was here today to give hope to the people in this room, all the people in this room, including me. I found connection with three people who needed no introduction to our story; we already had an instant camaraderie. That camaraderie gave me a sense of clarity and strength. A sweet breath of restoration that I didn’t predict. An unexpected gift I could give and receive at the same time. No matter what comes next, and there will be plenty of “nexts” to come for all of us, together we could know and understand that our heart warriors are strong in a way that is impossible to define. Together, we could hope in their future and in the success of their fight. Together we could trust that we can do this. It’s possible. Not easy, but possible. I was able to say all of that just by saying, “Hi.” It was an honor. A privilege. I’m glad I didn’t miss it. Follow this journey here. We want to hear your story. Become a Mighty contributor here . Thinkstock image by Ryan McVay

    Betts Keating

    When I Lost My Daughter With Truncus Arteriosus at a Swim Meet

    February 7-14 is CHD Awareness Week — a week that rides on the coattails of Heart Month, Heart Awareness Month, Wear Red Week, CHD Awareness Month and many other names for February. February has become the month for everything heart-related, for obvious reasons. Thinking about this compelled me to write something in honor of our own heart warrior, our youngest daughter. But, what could I say exactly? When I spoke to my husband about it, we both agreed. Sometimes it’s the aftermath that sticks with us. Sometimes the residual, the leftovers, the stuff around the edges, is the part we still struggle with. Like when this happened… We were at a swim meet, which is not unusual. We had been to many meets before, more than I want to count. It can be challenging to keep a positive attitude while sweating out of every pore of your body. You have to learn how to sit next to water but not actually participate by getting in the water. It can do funny things to your brain. Just ask any swim parent. In the past, I would chase down my kids and let’s be honest… hover… to make sure they were actually in the right place at the right time so they could achieve the glory of swimming in a 30-second race. Lately, they have both grown old enough to keep track of their own events. My daughters had earned the right of responsibility, and I had been lulled into a new sense of freedom. I let them go and do their thing, while I was suddenly free to do other things like volunteer to help organize the new timing system. It’s because I was volunteering that I was watching the meet so closely. It’s because I was volunteering that I ended up looking up at the blocks… and then down at my heat sheet… and then up at the blocks… and then down to my heat sheet… and then… with a sick feeling in the pit of my stomach, I realized what I saw written on the page did not match the swimmers lined up for the race. One swimmer was missing. My youngest daughter was missing. The anxiety washed over me like a waterfall. I was frozen. I had just seen her. It had been a mere matter of seconds since she told me how much she was excited about getting to swim in this race. It was totally unlike her to forget. She’s usually that swimmer who lines up at the blocks early. She’s usually anxiously awaiting her turn. So, where was she? As the panic began to rise, the bile in my throat made me feel like I was going to puke. I couldn’t seem to suck in a full breath. Relax. Breathe. I told myself. Run through the possible scenarios. If she had left the pool area she would have told me. She doesn’t wander, and she’s not the kind of kid who would run away. OK, move on. If she had been taken, someone would have seen it happen. She was with her friends. They would have said something. OK, move on. If she had gotten sick, someone would have noticed. Again, she was with her friends. They would have found me and told me. OK, move on. So, where? Where was she? After what seemed like forever, finally, I saw her. She was at the other end of the pool by the concession stand. She was with her friends. Laughing. Having fun. She had no idea what had happened. She had simply gotten distracted. OK. Deep breath. It’s going to be OK. Except it wasn’t OK. Not really. It’s never, ever completely OK. That little girl is more than my daughter, more than my genetic reproduction. She’s my medical miracle. My heart warrior. Every day that she wakes up and says good morning is one more day marked in the “I can’t believe she has made it this far” book. Every moment is another moment I almost wasn’t given. Every question she asks over and over, every time she rolls her eyes, and every time she gets sassy, is another moment I was never promised. Every hug, every kiss, every tear is a second chance to love the baby who almost wasn’t. I can’t think about it all. I can’t not think about it all. It makes life here in the “normal” difficult to process. As a family, we’ve fought the war of survival. We’ve battled the anxiety and fear. We’ve earned our scars. On most days, we’ve already won. We fight. In that, we’ve already received our trophy. We’ve already been accepted into the club. It can be invigorating. It can be exhausting. Somewhere inside of all that invigorating exhaustion is exactly where I discovered that missing one race is not the same as missing her life. She had missed the race, yes, but she was having fun. She had missed a race, yes, but she was also, finally, confident enough to explore on her own… without clinging to me. She had missed the race, yes, but she was happy, secure, and surrounded by friends. Who wouldn’t want that? Sure, she made a mistake. She had even let the team down, but I didn’t need to scold her. Once she realized what had happened, she felt terrible. There was nothing I could say to her that she wasn’t already saying to herself. She’s the kind of kid who probably won’t ever do it again. At least not if she can help it. Guess what? Kids make mistakes. Kids get distracted. Even medical miracles. In my anguish of fear and anxiety, I had forgotten to consider, maybe she had just screwed up. Maybe, she had just acted like an 11-year-old. Maybe, she was being “normal.” The crowd was so big, the meet was so chaotic, and my panic was so distracting that it kept me from seeing what was completely obvious. She was just a kid being a kid. No matter what our particular situations may be, I think as moms we can all agree that anxiety and fear come with the territory. I think we all agree that our children are never far from our minds or our hearts. It’s more than a knee-jerk response. It’s like smelly leftovers from a meal you didn’t want in the first place. Something like garlic asparagus or kimchi. It’s the kind of gift that keeps on giving. But just because my panic is justified, earned even, it doesn’t make it healthy. That day at the pool, it only took two minutes to find her. Only two minutes had passed between the panic and the relief. Two minutes that of course took another two months off my life. That’s the price I pay for being a mother. It’s also a small price to pay. The weight of illness at times surrounds me, engulfs me, and brings me to my knees. Occasionally, especially once I have recovered from my mommy-induced panic, I can see that’s not necessarily a bad place to be. From down low, the best thing I can do for myself and for my heart warrior, is look up. ©2017 Betts Keating. All rights reserved. Betts Keating is the author of My Movie Memoir Screenplay Novel, a memoir and a movie screenplay all rolled into one book. She lives in the Charleston, SC, area with her husband two daughters, the youngest of which has truncus arteriosus. Follow this journey here. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by j_photo