Here I am expressing my frustrations as a chronically ill and disabled person regarding the lack of help I receive and the lack of help available for me to receive. Although I recognize the rarity of my conditions and how that is proportional to the training and knowledge health care providers are equipped with, I still feel as we should receive more attention and help especially considering the data and results that is available.
I was diagnosed with a rare and fatal congenital heart defect called Truncus Arteriosus shortly after birth- one of multiple diagnoses I received in my first few days out the womb. Truncus Arteriosus is a critical congenital heart defect that occurs in less than 250 U.S. births per year. Yup, with nearly 4 million babies being born each year, not only am I one of the 40,000 who possess a congenital heart defect but I’m one of the lucky ones who gets one of the rarest abnormalities you can have. Truncus Arteriosus is a structural abnormality where instead of two blood vessels, there is one, and the wall that separates the left and right ventricle is not fully formed. You can read up on Truncus here.
Truncus Arteriosus' structure compared to a normal hearts’ structure
As a child I always had a grasp of my limitations especially when it came to my endurance. I was easily fatigued. Couldn’t participate in all the fun kid activities like field day. And so on and so forth. As I grew older my symptoms either remained the same or intensified. After my third open heart surgery in 2014, just stepping outside for 5 seconds in Florida’s heat resulted in me needing a 2–5 hour nap to replenish myself. Taking the stairs in highschool was a demanding. My inconsistence in attendance made it difficult to maintain relationships. All of these challenges I faced also impacted my mental health and how I viewed myself as well as the world. But because doctors said I was fine and because I didn’t want to seem needy or burdensome I pushed myself and adopted this way of thinking where I believed I just had to keep trying to build myself up so I could perform in a way I thought I could, like how I could when I was a kid.
My transition into adulthood has been difficult, searching for cardiologists who specialize in or are at least familiar with critical congenital heart defects like Truncus Arteriosus has been a hassle, attempting to find work I could do with the reasonable accommodations at a pay that could financially sustain me has felt like an impossible task, and getting my symptoms documented so I could get the help I’ve come to realize I need has been discouraging.
When I was growing up I stayed quiet about my hurts and pains going through life silently suffering by myself. Now that I’m attempting to be an active participant in life after being a vegetable for nearly 2 years, what I’m currently experiencing I feel like the word struggling isn’t even a suitable adjective. So because I love data and I like to study patterns I’ve gone on an investigation to find out what others who have the same and even similar diagnosis and struggles as me are doing. I’ve found quite a bit of information but at the same time hardly any information because of how few of us are living with Truncus Arteriosus. So I’m going to start off by giving the data that I found. As a current North Carolina resident I found it interesting that in the North Carolina Congenital Heart Defect Surveillance Network just 401 (33% of total) patients between 2009 and 2013 were employed at one point in the registry year and just 21% had 2 years of employment data. And it’s worth noting that older patients, black patients, and single (unmarried) patients were less likely to be employed. The odds of being employed decreased by 2% for each additional year of age of the patient. The odds of being employed was 22% lower for black patients as compared to white patients. And single patients as compared to married patients are significantly less likely to be employed, it’s as high as 50%. Although this network didn’t deeply discuss this, I do want to point out work participation was less likely among women, those with critical complex congenital heart defects, and those with other health ailments-like epilepsy and seizures. That’s just data from one study, another study based on a sample of 19-38 year-olds in three U.S. locations showed that 40% of the sample population reported disabilities (which is in alignment with CDC data that states ~4 in 10 adults with heart defects have a disability) and within that population 45% actually received disability benefits while 46% of them were unemployed. Like, wow more congenital heart defect patients are unemployed than receiving support from the government. The same report also stated that those with more than one disability had greater odds of being female, non-hispanic black, having a severe congenital heart defect, having had recent cardiac care, and having non-cardiac congenital anomalies (and guess what, that’s all me). This report and these numbers frustrate me because time and time again, study after study show the disparity for people with congenital heart defects, which are invisible disabilities, receiving adequate care. Even Mended Little Hearts and the Adult Congenital Heart Association express only about 10% of adults with congenital heart defects get the recommended care we need.
To further generalize the data I’ve found, multiple reports and studies show that just a third of those with Truncus Arteriosus work jobs and when they do they don’t stay for long. Aside from data obtained from reports and studies (often funded to “brag” on a facilities’ performance) I found a few stories of adults expressing what it’s like living with a congenital heart defect. I’d suggest you read some of the stories on Medium.com but right here, right now I want to shine light on two stories that caught my eye. One is from a young, middle age white man who was diagnosed with Aortic Stenosis, which is where the hearts’ aortic valve is narrow, reducing and potentially blocking blood flow from the aorta to the rest of the body. Without medical interference a patient would die. This man had open heart surgery to address the narrow valve at 15 years old and went home after just 4 days in the hospital. He had his challenges at school, especially when it came to socializing and building relationships but he did hit it off with a young lady who he married when he was 20 years old. He went to college and completed college (!!!amazing!!!) becoming an engineer while his wife had worked in nursing. He had his second procedure at 24 (just not open heart surgery) and contracted endocarditis a year later. This illness really shifted his view and drive of life. His desire for more time and freedom led him to divorce his wife, quit his job, and live out of his car at 26 years old. For a period of time he lived off his 401k money and worked odd jobs to get by. Although this may seem awful, he valued his time and freedom and wanted to experienced life on his own terms so he detached himself from a job that provided false security and started to live for himself.
Another story I want to bring up is about a white young lady with Pulmonary Atresia. Pulmonary Atresia is a defect that hinders the flow of blood out of the heart to the lungs. Along with her heart defect she has mild cerebral palsy and other health issues that limit her range of motion, job pool, and results in fatigue. She’s a poet and student studying to be a teacher but she’s expressed her desire to pursue medicine and has explained how she didn’t because of her body limitations. I want to point out some commonalities that add to my frustrations as an adult congenital heart defect patient not receiving the help and care I need like many others. Both the man and women are white in the United States of America. Their whiteness gives them a privilege and advantage in the healthcare system that they may or may not recognize. I mentioned this commonality because neither of them brought up neglect or medical malpractice in their stories which is significant in mental well-being, healthcare treatment, recovery, and personal growth and development. Writing is also commonality among them which I find interesting because I write as well and I find it helps me articulate, reflect on, and understand my experiences. This expressive medium seems to have a great benefit or perhaps influence regarding quality of life. I also want to point out how their health dictated what they pursued. Because of the health scare the man experienced at 24 years old and realizing 30 wasn’t promised he made a drastic life change. The young woman on the other hand had an interest in medicine and healthcare but because of the symptoms she experienced linked to her heart defect she went into a field that she saw as safer for her.
This is just some of the information I’ve found and will now keep in my arsenal of knowledge about my health conditions. I do this to validate my experiences, feelings, and struggles since I don’t often express my need for help and since black women are often dismissed in healthcare. And if you think I’m reaching when it comes to the neglect and medical malpractice black women experience consider that the Serena Williams had to muster up energy to climb out of bed after her C-section to find and tell a nurse she was having a blood clot. In which the nurse told her she must have been confused because of her pain medicine but she wasn’t and she actually had multiple blood clots.
Collecting data and stories of people let me know what I’m feeling is not all in my head and they can provide me with ideas on how to manage. A huge frustration for me right now is that I don’t know what’s best for me. I do what I can to get by but oftentimes I don’t make any positive progress. I’m just shooting from the hip and taking things day by day.
This was originally posted on Medium.com check out my other writings here.