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It’s Not Always About the Cure

Monday, October 20, 2014

By Beth Adams

Every now and then, the most amazing people walk into my office. Nina* is one such person. I first learned about her from a friend and colleague from a nearby community hospital who diagnosed her congenital heart defect and asked her to see me for an opinion about treatment options.

You see, Nina was born with an unusual problem that we cardiologists call ALCAPA (because the real name is too long to write every time) and had never had surgery to repair the problem. In this heart defect, the left coronary artery that supplies blood to the heart muscle is in the wrong place; instead of arising from the aorta and carrying oxygenated blood to the heart muscle, it comes from the pulmonary artery and steals blood away from the heart muscle.

Most children with this problem die in the first year of life; Nina was 61 years old when I met her.

Why didn’t she ever have surgery to correct her heart defect? Well, honestly, there weren’t any good ways to fix this type of problem when she was born… we were still decades away from routinely moving coronary arteries. In fact, even the diagnosis seemed to elude her cardiologists way back then, and her family was simply told to take her home and love her because her prognosis was uncertain.

Nina and I connected immediately. She is vibrant and warm, and exudes a calm sense of understanding and wisdom. She’s been limited her entire life, but has figured out ways to do just about everything she wants to, despite a limited ability to exert herself. She managed to get married and hold down a full-time job, and even had two kids!

When Nina came to me, she had questions—lots of them. Her diagnosis had always been a mystery to her, and she was overjoyed that we could finally tell her what made her heart unique. The challenge was that there were not a lot of good options for her when we met. A large part of her heart muscle was dead and was never going to recover, no matter what therapy I offered. During her visit, we talked at length about moving coronary arteries, fixing valves, changing medicines to help her failing heart, and even heart transplant.

As we neared the end of our discussion, Nina smiled at me and explained the following: “I don’t think I want to do anything, at least not now. I’ve had a good life. I’ve done everything I wanted to do, and then some, albeit with some limitations. I’m not looking for a cure, but I am so happy to finally understand what’s wrong with my heart. I just want others to be able to learn from my story.”

It’s reasonably difficult to leave me speechless, but for once, I had nothing to say. It’s not always about the cure… sometimes it’s just about having answers. Nina and I continue to work together to optimize her ability to live the life she wants. All of the options we talked about remain on the table, but she is clearly the one calling the shots.

*Name changed to protect privacy.

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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