I was born with a heart defect, and at eight months old, I had open heart surgery. At the time, my parents were informed I wouldn’t live past the age of 12. Earlier this month, I turned 40. Adults with Transposition of the Great Arteries (TGA) who have survived a Mustard or Senning procedure are very rare. Eight years ago, I joined a Facebook group purported to be the largest online group of adult survivors around the world. Today, there are just 890 members.
The defect we all share is one of those invisible disabilities that brings many of us together in ways others don’t understand. It’s difficult to articulate to friends that at 24 you were told you’d “made it to twice what you were supposed to.”
In some of us, it can also create survivor’s guilt on a different level. While we typically think of survivor’s guilt being about those who lived through a natural disaster or another wide-scale traumatic event, it can also manifest itself in those of us who survive illnesses. It can even go deeper than that. Among my Mustard/Senning survivors group, I often share very little. Why? I feel guilty because I cannot empathize with many of their posts. Sympathize, certainly, but empathize? Why? Let me explain:
Chronic Health Issues
One of the biggest concerns for those of us who have TGA or any other type of illness like this is the daily health issues. In the case of adults with TGA, we are prone to being overweight because, despite the repairs done to our hearts, they don’t function at 100 percent. Because of this, we struggle to exercise, and it becomes a vicious circle.
As noted in this resource from Regis College, more than 68 percent of Americans have two or more chronic conditions; these include diabetes and heart disease or failure. Both diabetes and heart failure are common “side effects” of TGA, and many of the members of my survivors group live with either or both of these and many more daily.
I, on the other hand, do not. While morbidly obese for nearly my entire life, I was lucky to live without any chronic conditions such as high blood pressure or even irregular heartbeats (arrhythmias). I would get the latter when stressed, but for many an irregular heartbeat is regular.
At 40, I no longer have health issues from obesity, either. Hitting 36 made me realize I was unlikely to hit 48 if I didn’t make some lifestyle changes. I changed my diet, then gradually integrated exercise. After dropping over 100 pounds, I’m healthier at 40 than I was at 18. Do I broadcast this among my fellow Mustard/Senning survivors? Very rarely because many have lost weight as well, but via gastric bypass surgery (). I did not.
Insurance Strife
Surgeries such as gastric bypass are typically covered by insurance programs, but only if certain criteria are met. For the members of my survivors group and others who were born with their conditions, getting insurance coverage can be difficult.
I recall hearing my mother arguing with insurance providers over covering everyone in the family but me because I have a pre-existing condition. Before the Affordable Care Act, most insurance companies could deny coverage to people with pre-existing conditions, like me. Today, they can’t do that.
At the same time, many of my fellow survivors still struggle with their insurance, Social Security coverage, and even both. One survivor is struggling with Social Security because at this point in her life, her condition and its combined complications are classified as “Severe” with the potential to improve. However, she is on the transplant list and takes multiple medications for chronic heart failure.
In the meantime, I have no constructive help to offer her since, during my adult life, I have always had good health insurance thanks to work. I also cannot sympathize with her conditions, at least not yet.
The Big Stuff
The large-scale health issues that many of my fellow survivors deal with daily have yet to even touch me in the slightest. Many live with high blood pressure and Type-2 diabetes. In many cases, they develop congestive heart failure, one of the most common complications of a Mustard or Senning procedure that occurs in adults.
Many of the members of this group have already received either pacemakers or full heart and lung transplants. Others still are awaiting these life-saving surgeries, unable to work, let alone exercise or even participate in some of life’s daily activities.
Meanwhile, I sit back silently thanking the stars that I rarely even visit the cardiologist. I’m more concerned with my everyday health, which is quite good. I visit a nurse practitioner who specializes in women’s health because of migraines and other issues unrelated to my heart.
For now, I sit quietly in the background of my survivors group being grateful that at 40, I can lift weights regularly and am in better shape now than I was when I was 18. I realize that I am thankful for this ability, but among my TGA peers, I often feel guilty about the fact that I do not have the issues they do.
While I will always be an active member of the group and proud of the fact that I am healthy and active, for the sake of my fellow survivors, I will continue to offer my help without qualifying that “I don’t have that.” That helps no one. As a colleague posted online this week, “It is better to give people a bit of our heart rather than a piece of our mind.”
Photo Credit
Image courtesy of Gratisography.com
Guest Author Bio
H. E. James, MBA
Hattie is a writer and researcher living in Boise, Idaho. She has a varied background, including education and sports journalism. She is a former electronic content manager and analyst for a government agency. She recently completed her MBA and enjoys local ciders.
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