By Kelly DiMaggio
20 Jul

Empathy for the Routine CHD Patient

Thursday, July 20, 2017

As the first generation of adults living with CHD, I'm sure that just about all of us have faced an ignorant or beyond frustrating experience when dealing with a seemingly routine illness for a heart-healthy individual (like a stomach flu or upper respiratory infection) that is inherently more dangerous or has more severe complications for a CHD patient. Many of those who aren't familiar with complex CHDs, or who have never glimpsed into the life of someone with chronic illness, often have trouble grasping how these seemingly "run of the mill" illnesses can be much more serious for a CHD patient—including educated and well-intentioned medical professionals.

This is where advocacy, awareness, and most importantly, empathy, become essential. Friends, family members, caregivers and medical professionals need to continue to expand their knowledge, familiarity, and compassion when it comes to interacting with or treating CHD patients outside of a cardiac setting.

Over the years I have heard about—and experienced myself—poor treatment for a non-cardiac-related illness in both inpatient and outpatient settings stemming from an inherent lack of knowledge and patience to understand my heart condition and the risks it poses. Just this past winter, I heard many stories of CHD patients denied being admitted to the hospital because it appeared they "just had [insert seasonal illness here]."

As a matter of a fact, I went into atrial fibrillation while under the care of paramedics in December and by the time I arrived at the ER via ambulance I was back in normal sinus rhythm. As a result, despite multiple attempts to explain my hypoplastic left heart syndrome (HLHS), I was told that due to my age and the fact I wasn't having active chest pain that I didn't need to be put on a telemetry monitor, have a cardiac consultation, or be admitted. Umm…excuse me?

However, while I don’t want to minimize these stories or dismiss the importance of advocating for ourselves, I do wish to highlight an extremely positive ER visit I just had. One that I hope shows the changing mindsets of the medical community and inspires this growth and change to continue. I believe strongly in the power of positivity and setting forth to manifest what we want to see become our reality.

Just recently, I fell extremely ill at the hands of the intestinal stomach flu. While this is certainly a miserable experience for anyone, for a CHD patient it can turn very dangerous very quickly. As I mentioned before, it is often difficult for those without CHD to fully understand this. While most lay miserable on the couch for a few days, I found myself—at my husband and cardiologist’s insistence—in the ER just shy of 24 hours after first getting sick.

Having gotten so dehydrated, and running such a high fever, I became very tachycardic and my pulse ox took a dip. I was also experiencing increasing number of palpitations and slight arrhythmias—my poor half of a heart was working major overtime! As we would later find out, my potassium levels had actually significantly dropped and I was given potassium. This is particularly notable as very low levels of potassium can directly contribute to dangerous heart rhythms. Having being newly diagnosed with atrial fibrillation and resulting syncopal episodes, this is certainly something I was trying to avoid. 

Instead of looking at me like I was being dramatic or overreacting, I was met with instant kindness and empathy. Patient registration got me checked in as efficiently as possible. As soon as I mentioned that I have a complex CHD, they immediately called to the doctor in the back to give her a heads up. The team listened carefully to what I had to say, and immediately got IV fluids going. The doctor was able to pull up prior EKGs and consulted my cardiologist as soon as she noticed an issue with my current EKG. I felt listened to and respected, so much so that I made a conscious effort to specifically thank all of those who were taking care of me. It was such a refreshing experience compared to how we were treated in December, and it truly made all of the difference in the world. 

I am also so lucky to have such wonderful friends, family, and co-workers. I am blessed to say that my employers are as understanding as anyone can possibly be. My friends and family checked in on me daily and were so understanding when we had to miss a family birthday party that we had so been looking forward to. My wonderful mom came to stay and take care of me and run our household for two nights. Those who surround me understand that my reality looks a bit different. It’s been a tough task for me to show my increased vulnerability, to acknowledge my differences, and to ask for help. But one step at a time, I’m getting there!


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