Old habits die hard, and evidently so it goes with old science. The Internet is filled with tons of information both good and bad. The pitfall seems be that unlike the most recent edition of an old-fashioned print encyclopedia, you cannot be certain that the information you’re viewing on your computer is indeed the most recent information available. So you have to research the research to learn the date of that particular piece of information. If the information is medical and sixteen years old, conventional wisdom states clearly the information surely must have been superseded many times over.
“You have Nonischemic Dilated Cardiomyopathy,” the cardiologist said to me, “Your ejection fraction is 10-15%”.
Still in a fog from the sedative used during my catheterization, questions were rolling their way through my mind but quickly became lost before arriving on my tongue. “Oh,” was all I could muster. Comments from staffers at the hospital and fellow patients went something like this:
“You’ll take the next three months off work and rest.”
“You will probably not be able to return to work at all. Start applying for disability as soon as possible.”
“Oh Honey, you’re so young.”
“You need to start exercising and lose weight.”
“Do not exercise under any circumstances. Don’t worry about losing weight.”
“A lot of people live normal lives with an EF [ejection fraction] this low.”
“Here, sign this.”
“Here, sign this.”
“Here, sign this.”
One after another staffers wandered in and out of the ICU room with papers informing me of ridiculously basic things like “Eat a heart healthy diet,” supported with ten pages of poorly-copied information that might have been interesting – or legible – if presented in color on a quality printer. As I looked through them and tossed them into my recycle bin at home, I had to wonder if these staffers received their salary and benefits documents in the same careless way. Ah, but I digress…
Anxious to find all of the answers that were unattainable through the staffers and clear up some of the conflicting information, I turned to the internet. There I learned that this condition affects only one person out of every 10,000 and the mortality rate is 50% within 5 years. There is a legitimate concern of Sudden Cardiac Arrest, and that turns out to be the number one killer, so to speak. Treatment includes three months of inactivity (rest) combined with a regimen of medicines that will slow the heart rate, remove excess liquid from the body, and add potassium all in an effort to help the heart function efficiently. Heal? No, rather, reduce in size and pump slower, allowing the muscles of the heart to continue functioning. The studies were thorough, but were dated 1999 – a full 16 years ago. Surely there have been more advances and studies since then, right?
Good luck finding them.
Lamenting the lack of information to the cardiologist, the general practitioner, and the pulmonologist resulted in a playback of their comments from the beginning of it all:
- “Keep living your life as you normally would just be careful and don’t push yourself too hard”.
- “Do nothing but rest for the next three months: no work, no cooking, and no cleaning, just rest and take these medicines.”
- “Here is some updated information for you (accompanied by another ten pages of printed information full of underlined links that obviously cannot be “clicked on”).”
Wouldn’t it be nice if this supposedly life-altering condition came with a real manual? A Guide To Dilated Cardiomyopathy: Answers to Every Question You Could Possibly Have.” Yes, oh yes, that would be grand. Perhaps I’ll start on that straightaway. Perhaps this condition is not as rare as previously thought in 1999 and maybe….just maybe….it’s not as deadly, either.
© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016