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?
When I worked for the Federal government, we often had to give briefings about our mission to new employees, congressional staffers, new administration members, etc. The title of these briefings always seemed to end with “101” which meant that the audience was getting a quick and overview of things they needed to know quickly.
When you enter the land of heart failure, for most if not all of us it is uncharted territory. So it might be helpful if your medical team could provide a version of Heart Failure 101 so that you know what steps you can take, and resources you can use, to be as healthy as possible. While you talk about your symptoms and treatment during each appointment, I think most people are like me and have a lot of questions about why you can’t eat certain things, or about measures you can implement to modify your health lifestyle, or about how you can deal with the increased anxiety you are starting to feel, etc.
It seems like virtual reality is everywhere in the 21st century. What exactly is virtual reality? According to the Merriam-Webster dictionary website, virtual reality is an artificial environment which is experienced through sensory stimuli (such as sights and sounds) provided by a computer and in which one's actions partially determine what happens in the environment.
Before I retired I observed the use of virtual reality for training, with the use of virtual reality to train law enforcement officers in simulations of shooting situations. So it occurred to me that virtual reality might have a role in training medical personnel to perform procedures to treat heart and other medical conditions. Perhaps the technology could even give medical personnel a glimpse of what it feels like to have the particular condition they are treating.
Okay, once again it is time for me to lobby the medical community about the inappropriate term “heart failure”. Why is it an inappropriate term? Because virtually every website I can find says that your heart doesn’t really fail. So there is no logic in calling something a failure that doesn’t really fail – zero logic, none, zilch.
Here are just a few comments about the inapt nature of the term. From the Cardio Smart website: “Contrary to how it sounds, heart failure does not mean that your heart has stopped beating.” Or from the British Heart Foundation: “Having heart failure doesn’t mean that your heart has stopped working, but that your heart needs some support to help it work better.”
You may not be familiar with Title 36 of the United States Code. It is the title that is devoted to the subject of Patriotic and National Observances, Ceremonies and Organizations. Section 101 of Title 36 states:
The President is requested each year a proclamation -
(1) designating February as American Heart Month;
(2) inviting the chief executive officers of the States, territories, and possessions of the United States to issue proclamations designating February as American Heart Month; and
(3) urging the people of the United States to recognize the nationwide problem of heart and blood vessel diseases and to support all essential programs required to solve the problem.
I recently started taking Entresto, the new heart failure drug. The product information insert that comes with the Estresto lists the following side effects and instructions: “Angioedema that may cause trouble breathing and death. Get emergency medical help right away if you have symptoms of angioedema or trouble breathing. Do not take ENTRESTO again if you have had angioedema while taking ENTRESTO. People who are Black or who have had angioedema and take ENTRESTO may have a higher risk of having angioedema”.
Trust me, this is a notice that will get a heart failure patient’s attention immediately. Heart failure routinely comes with shortness of breath, so needless to say trouble breathing and death are both huge concerns for heart failure patients. But I did not know what angioedema was, or why it might cause a patient to have difficulty breathing. I wondered if it might be helpful to include a description of angioedema in the product information insert.
Over the last nine months, several friends have experienced unusual heart beats. Maybe they felt like their hearts were beating too fast, or even missing a beat. They did the smart thing and went to see the doctor. They were instructed to wear event monitors for a while which would track their heart beats and enabled them to register any unusual feelings that they experienced during the time that they were wearing these monitors.
So what was going on with them? I’d like to be able to tell you in plain English. But just like the legal profession, the medical profession uses peculiar terms that the lay person does not easily understand. They tend to use short hand terms or acronyms to describe or define medical conditions. As you may recall, a previous post covered how the short hand term “A Fib” is used to define a heart condition that indicates a racing heart.
I think I have written in previous blogs about the fact that I have a leaky mitral valve. This can also be referred to as mitral valve regurgitation. Yes, I know - once again I am using another strange term that is chock full of consequences. So I probably need to do a short course on mitral valves and the concepts of regurgitation and prolapse.
Let’s start with the part of the heart that is at issue - what is a mitral valve? Well, according to the website cedars-sinai.org, the mitral valve is one of the heart’s four valves. These valves help the blood flow through the heart’s four chambers and out to the body. The mitral valve lies between the left atrium and the left ventricle. Normally, the mitral valve prevents blood flowing back into the left atrium from the left ventricle.
Because people know I write a blog about heart failure, they often ask me questions about various heart terms they may have heard. Recently, a friend asked me what the term “heart murmur” means. I had to admit that I did not know the answer, but suspected it might have to do with a heart valve.
Well, imagine my surprise when I started to research the issue and realized that I probably fall in the category of people with heart murmurs! So I decided that it is a perfect topic for a blog post.
In a previous post, I discussed a number of heart failure clinical studies that are ongoing. These studies seek patients who can participate in efforts to develop advances in heart medications and heart devices. Researchers also look for participants to help them develop new tests that can aid doctors in the diagnosis of heart failure at an earlier stage, and tests to track the progress of a heart failure patient.
In fact, about 10 months ago, I was interested in participating in a study that would determine if the Type 2 Diabetes drug, Farxiga, could be beneficial in the treatment of heart failure. Alas, one of the qualifications was that the patient must have a blood pressure above a certain level. If you have been reading my posts for a while, you know that my blood pressure is always very low. I did not meet the blood pressure qualification and was not eligible for this study.
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.