Gosh, I’m slipping. It has been a while since I have complained about the very absurd and erroneous term for the medical condition of heart failure. After reviewing disclaimers stated by various heart related organizations (for example, well really, the heart doesn’t fail), I think it is obvious that there needs to be a more descriptive, less intimidating term for this condition that strikes many of us.
Lest you think I am being too sensitive, a number of friends and loved ones have commented to me that the term heart failure is really silly. I mean, they look confused when they initially find that I have heart failure. It’s like you can see wheels turning in their heads as they think: Heart failure?!??? But she is standing right here talking with me? Wouldn’t she be dead if her heart failed and is no longer working?!?? Wouldn't I be attending her funeral?
Yes, dear reader, you are preaching to the converted. I’m not dead so my heart certainly has not failed – yet. Plus, I think I could be a lot more inclined to be optimistic and focused on managing my heart failure if we could just find a better name for this condition. Attitude is everything when It comes to fighting a chronic illness. Wouldn’t you be more inclined to wage a full scale offensive if you were not saddled with an unmotivated, failed heart? I mean, I can just hear our President reacting to news of a failed heart – "It’s a disaster!!!!!" Nope, the term is just wrong because I don’t see my heart as being anything like a failure or a disaster.
In fact, when I think about it, I compare being a patient with a heart condition to being someone who has a learning disability like dyslexia. You would be shocked if you googled learning disabilities or dyslexia to find out the number of artists, actors, writers, etc. who have achieved success despite their issues. For example, Jay Leno says that he is is dyslexic but doesn’t mind working hard to overcome it. “Everybody has something,” he says. “My mother would always say to me, ‘You’re just going to have to work a little harder than the other kids to get exactly the same thing.’ And that’s an approach that I’ve always used in my life.”
I think that this is exactly what my heart and I do, and I am sure the same is true of friends with chronic illness. We look normal to the casual observer because we use workarounds and sheer will to be as physically active and functional as possible. We're like the slogan for the rental car company - being number 2, we just try harder!
So instead of calling my heart a failure I’d say it’s freaking resilient. The two of us work around a lot of challenges and we do not fail – it is simply not an option. (Apologies to the movie Apollo 13).
So it became clear, once again, that I need to help not only the medical community out – but hearts everywhere that are working overtime to help their owners appear to be normal. I need to come up with a better name for this unfortunate condition they are trying to overcome – other than HEART FAILURE!
Of course, all my friends and family also know that I have a crusade to find a better term. They have helped me brainstorm ideas. For example, a former Federal government colleague who is familiar with heart issues came up with a brilliant idea which is rooted in a simple test that is done to measure the heart’s ability to do its job.
I’m speaking of course of the echocardiogram. According to the Mayo Clinic:
The echocardiogram is one test that helps to determine heart failure by measuring your heart’s pumping strength. The Mayo Clinic says:
So referring to this measurement, my friend said: “Why don’t they just call it “low ejection fraction.” In that same vein (pun intended), the name compromised cardiac output could also be a possibility, as could heart pumping deficiency. All seem like sensible options to me.
Of course, in the age of Twitter, Facebook and other social media platforms where brevity of terms is preferred, I came up with some shorthand terms which we could use. For example, we could abbreviate convert the term low ejection fraction to decreased ejection fraction, and then use DEF as our shorthand term. To provide more clarity, it could be HI DEF for those with just a little decrease in the ejection fraction; LO DEF for those who have much more of a decrease in the ejection fraction; and MOST DEF for those who have really seriously decreased ejection fraction like I have.
I presented these new terms to a family member. This person liked all of the suggestions, and thought that they were much much better than the term “heart failure” which is “dismal”. The only criticism was that it might make one think of television – high def channels. My response was that I thought this was a good comparison. My intent on changing the term is to make it less “dismal” and to bring the nature of the problem into clearer focus – just like high def channels bring the pictures into better focus.
I doubt that my ideas will gain much traction, if any, among the medical community. But I can guarantee you that my support is strong among friends, families, and chronic illness colleagues. They love the tongue-in-cheek nature of some of my ideas. But I think they are very sympathetic to the lack of motivational healing a patient is able to achieve when they are diagnosed with a disease that has “failure” in the name.
Hope does not spring eternal from failure, so why would we expect a patient’s heart to exude hope when after all the hard work it is doing it is still looked at with reproach? But if you have a deficiency or a low or even compromised output, well there is always room for improvement. But most important - you're still in the game. And in the book of life with a chronic illness, you still have the opportunity to write many more chapters!
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.