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Conquering CHD

Navigating the Adult Healthcare System With Congenital Heart Disease

No one wants to be in the hospital. No one wants to think of one as home. Unfortunately, for many people with congenital heart defects/diseases and our families, that’s what hospitals often become, a kind of home. We’d all rather be snuggled in our own beds, watching Netflix and not the hospital-approved programming. But for many adults with CHD, the fluff of the pillows isn’t the problem. You’re not supposed to like it. It’s a hospital. You’re supposed to heal and go home. But while you’re there, shouldn’t you feel as if you’re in the right place? A place equipped, a team prepared for you? A center that acknowledges your sub-specialty? As an adult, I have been admitted to and visited clinics of both pediatric and adult centers. And there are pros and cons to each. But we don’t really talk about the difficulty both have in fully serving the adult congenital population. There’s a discomfort in being the oddity in an adult hospital, a fear in being where CHD is not well understood, where you’re the youngest patient on the floor, in the waiting room. Often for the first time, overnight guests aren’t welcome, and the nurses have never heard of your condition. Neither has the physician. How could they treat it? The weight of your collected medical trauma does not burden the medical team, but rather it’s discarded, disregarded, dismissed. You’re just another disagreeable patient. In a pediatric hospital, nothing is meant for you. You’re always the oldest patient on the floor, in the waiting room. Parents holding tiny babies looking at you and you wonder “are they wondering why I’m here?” Cartoons, bright colors, and doll-sized chairs tell you kids belong here. You’re not represented on their website or in the halls, and when making appointments they ask, “What’s your child’s birthdate?” Each time, you reply, “I’m actually the patient.” Practical issues arise as well, they may not be ready for your height or weight, and if an organ that’s not your heart needs some attention, they don’t have the staff. You feel as if you don’t really fit in either place. Then add the complication of not having enough Certified Adult Congenital Specialists to go around. Adult patients are forced to travel farther, where they may be removed from the support of family and friends, or hop from hospital to hospital as their doctors leave. At age 31, just eight years ago, I started seeing an ACHD Specialist for the first time. I will be starting on my fourth new physician in so many years. Getting used to a new system, a new clinic, a new set of faces, once again. All while trying to manage my health and the worry that something might go wrong because I have a new team that doesn’t know my background. Adults with congenital heart disease are a displaced population. No one really seems to know what to do with us, they can’t agree, or they don’t want to make the investment. It’s a frustrating struggle, and I don’t have all the answers, but we have to keep raising our voices until we are heard.

Community Voices

Scared of being in a relationship cause of a heart condition

First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
#aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure

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Community Voices

What My Congenital Heart Defect Has Taught Me

I’m pretty open about my heart defect. It’s obviously a big part of my life, and I guess I’m just the type of person who talks openly about stuff like that. My heart defect is such a big part of my life, actually, that it comes up pretty easily in conversation. Usually, I just say something along the lines of “…with my heart” or “…because of my health,” and then people ask, “what’s wrong with your heart?” and I get to say my favorite thing ever. Seriously, the feeling I get when I say this one line is probably evil, but it makes me really happy. When people ask me about my heart, my first answer is, “I only have half a heart!” Without fail, I will watch the person I am talking to struggle to keep their mouth closed. Of course, I don’t just leave them at that. If they ask for more detail, I give it to them. “I was born with a form of hypoplastic left heart syndrome. Usually, people with this CHD have four chambers to their heart, but the left atrium and ventricle are smaller than they should be, but the left side of my atrium and ventricle just didn’t grow at all. Because of this, I only have one valve, and it doesn’t work all the way. I’ve had a lot of surgeries to help, but I’ll never be ‘fixed.’ Also, my atrium and ventricle don’t talk a lot, so I have a pacemaker.” This is the part where the person I’m talking to tells me that I am, “soooo strong.” It is such a kind thing to say — that I am strong and can get through it. But here’s the deal: I am such a baby. I am a wimp. I don’t enjoy echos (sonograms of my heart and blood flow) because the tech has to push on my scar and my throat. I don’t enjoy getting labs done because needles have messed me up! No matter how many people tell me how strong I am, I don’t feel it. My heart defect hasn’t taught me strength or that I can do anything, because every time I’m faced with a new CHD challenge, I feel helpless. My heart defect has taught me friendship, not strength. It has taught me that when you can’t be strong enough to face it, your friends can carry some of that weight for you. It will still be heavy, but you won’t be alone. My heart defect has taught me courage, not strength. It has taught me that when you can’t be strong enough to do it confidently, you can still do it. It will still be scary, but it won’t be impossible. My heart defect has taught me hope, not strength. It has taught me that when everything sucks, it will get better. It will still suck for a while, but not for forever.

Community Voices

How is the pandemic affecting your heart situation?

<p>How is the pandemic affecting your heart situation?</p>
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Community Voices

How’s everyone doing?

I’m doing as well as can be expected. I’ve begun my slow descent into total isolation. I’m so freakin paranoid right now. I don’t want the world to shut down. I was ready to start living my life again. I want my parents and my family to be okay. I want to see my dog. That’s all I want. #quarantinethoughts #CHD #Dystonia #ChronicPain #ChronicIllness #CoronaVirus

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Community Voices

Corona

My mom brought up a good point. She said, “imagine not having disability benefits right now?”. Honestly I can’t, I was just about to start my job search when news of this Corona virus started. I have just moved into my own apartment (today!) which I’m so proud of. Without disability and the support of my parents I would have to live in my parent’s home at age 32. While it wouldn’t all be bad (hello home cooked meals) they are 70+ and have to most likely begin to slowly quarantine themselves. At this point my cardiologist has emailed me and told me to practice social distancing. That’s fine but only because of these supports that I am so lucky to have. I am so grateful to have disability benefits because otherwise I wouldn’t be able to live the, albeit somewhat, independent life I do now. #CHD #Dystonia #ChronicPain #ChronicIllness #Stroke #Arthritis #Disability #Benefits #corona

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Amber Gale

Why Parents of Children With Congenital Heart Defects Need Help Too

Approximately 40% of parents of a child with a congenital heart defect report a need for mental health support or care, according to study published in Frontiers in Pediatrics. I wish I could say that I was shocked by this fact, but I’m not. Congenital heart defects (CHDs) are not just hard for the patients, but they’re hard for everyone in the family. You go through things that you never thought you’d have to go through, and post-traumatic stress disorder is heavy among families who have endured these challenges. For me, that’s where my challenges have lied. There’s a long list of things that can take me back in an instant, and make me feel like I’m right back in those moments between when I didn’t know if AJ was going to live or die. It’s the sounds of the red alarming beeps of the monitors, the smell of the palmolive dish soap that they give out to pumping moms, the feeling of having dried-out cracking hands from the copious amounts of hand-sanitizer you’ve used, the hospital food and vending machines. It’s that feeling when you’re taking the elevators to the CICU floor and the panic you felt when you couldn’t fit on because they were full, and you’re afraid something is going to happen in those two minutes. It’s those moments when you aren’t at your kids side and your phone is glued to you incase they call to let you know that something went wrong. It’s going to the DOT, and being unable to go inside because last time you went there your kid stopped breathing. It’s walking the halls of the hospital and browsing mindlessly in the gift shop, waiting for the next phone call and update on the progress of your kid’s surgery, knowing that there’s a 50/50 shot that the call won’t be positive. The sound of the code alarms takes me back to those moments when you’re walking on the unit, only to be told you can’t go past the desk because a code blue was just called and you have to wait. You know what they don’t tell you at that point in time? They don’t tell you if it’s your kid, so you listen intently, waiting for the next announcement to make out which area it’s in, wondering if it’s the mom you were just chatting with when you realize it’s not your son’s pod. It’s the feeling of the fleece tied blankets that were generously made by girl scout troops. It’s flat pillows and uncomfortable hospital couches and chairs.  The sound of someone opening curtains on a rod is like nails on a chalkboard and puts me into an immediate panic that I slept through an alarm and missed something. It’s looking at your kid in the wrong light and wondering if they’re OK and pulling out the pulse oximeter to make sure. It’s being thankful for home monitoring and alarms, while at the same time panicking about how many times you’ve walked into the room only to see that your kid isn’t even wearing the sensor, but the numbers on the screen look fine. It’s making sure your kid is breathing — when they’re sleeping, when they’re focusing, when they’re playing. It’s watching the rise and fall of his chest and knowing with precision when it’s even just slightly deeper and more labored or faster than usual. It’s not all bad, I promise. This journey has been amazing and worthwhile more than I could ever explain, but I also need to be clear that it’s not a walk in the park. But you know what my favorite thing about this research study was? If you really dig in and read all of the notes, you’ll see that the overwhelming majority of the parents who participated said that they were either already receiving, or were willing to receive help of some kind. That is amazing, and it’s a testament to the growth of our society learning to accept that it’s OK to need that help. Being a parent of a kid with a congenital heart defect is hard. It’s challenging. It can make those other things that used to be second nature feel impossible: sleeping, eating, even participating in relaxing activities that used to be fun. Depression, anxiety, psychological distress…nobody wants to think of themselves as having those things, but the fact is that many of us do have them. And it’s OK to need and get help for it. There is no award that you’ll get for being able to say, “I’m a parent of a child with a CHD and I never wanted or needed any help.” Admitting you could use help is scary, but I can also promise you that it’s incredibly powerful as well. If you’re struggling, get that help  — talk to a friend, talk to a peer, talk to your doctor, talk to your social worker, call 1-800-273-8255 (TALK) or use the online chat service if you don’t want to talk on the phone at suicidepreventionlifeline.org/chat/. There is a misconception that those services are only for people who are suicidal…they aren’t. They are for anyone who is going through a hard time and needs to talk, and they can help point you in the right direction for additional services if you need it.

Community Voices
Community Voices

big feelings for a big year #CHD #adultchd #asdpapvd

this year as been especially tough.
I have spent all year back and forth to specialists and tests, getting jabbed and prodded.
I was diagnosed with ASD & PAPVD (atrial septal defect & Partial anomalous pulmonary venous drainage) in March this year.
I had my first echo in January, which showed only a small amount of defects that where not worrisome. but the cardiologist ordered more tests as he suspected an ASD and PAPVD had been missed.
he was right.
after a transesophageal echocardiogram, cardio MRI and cardio CT angiogram everything was 100% confirmed & I was told the daunting news of my need for open heart surgery to repair these congenital defects.
I was put on the public waiting list in May and finaly have a date or my surgery which is in January.
all in all it’s been a complete loop of doctors and being tested this year which has been stressful especially seems I never knew I wasn’t right and I have never even been admitted to hospital for anything in my life.
I have a huge journey ahead still with my recovery and a huge mental hurdle with another year given to this condition and it halting so many of our goals and ambitions. but I also want it to hurry up and happen so I can recover and move on from this part of my life and get back on track and keep the mental breakdowns and what not to a minimum again.

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