I suspect most people are familiar with the adage: Curiosity killed the cat. The website phrases.uk.org says a previous version “Care killed the cat” dates back to 1598. Care was apparently defined as worry or sorrow. The first use of the word “curiosity” was substituted in 1898. The free dictionary gives several meanings for the adage, such as inquisitiveness can be dangerous, especially when it extends to things one does not need to know about, and being curious can get you into trouble.
The expression is appropriately applied to people who are blatant busybodies, snooping into matters that are not their concern. But as the patient of a chronic illness, you have not just a right but an obligation to be curious. What do you need to know? Well, it would be helpful to know the symptoms of the condition. But you also need to gather and analyze other pertinent information such as: how the condition will impact you personally, how your doctors will treat it, and how you can manage your life and well-being going forward. Your curiosity will be a crucial companion, empowering your ability to make decisions and rule your life.
I think as time has passed, I have asked a lot of questions of my health care providers, and they will sometimes refer me to resources I can investigate on my own to be an informed heart failure patient. I greatly appreciate this. I must admit that initially, I may not have been eager to learn about this chronic condition. I think I was in denial, hoping that if I just got more rest, the condition would magically disappear. Additionally, I was afraid to do too much research into the condition of heart failure because I might learn that death was around the corner.
Unfortunately, in my case, the only thing that magically seemed to disappear was my good health, as I watched my ejection fraction drop, my left ventricle dilate, and my mitral valve go from a relatively innocent leak to a moderate to severe leak. Fortunately, something rather dramatic occurred that required me to face what was around the corner (also known as reality). This dramatic event turned out to be fortunate because it made me finally accept the reality that I will always have this condition. It was at this time that I also accepted that the only way to keep death from lurking just around the corner was to take charge of my health and to manage the condition to the best of my ability. This event occurred approximately four years ago when my cardiologist called to advise me of the rather dismal results of an echocardiogram. It had dropped from around 30 to around 15.
The cardiologist told me that he wanted me to visit a doctor who specialized in heart failure to determine if I was in need of a heart transplant in the near future. To say I was stunned would be a massive understatement. I think the first question that came out of my mouth during this conversation was “What did I do wrong?” My cardiologist clearly expected this question. In fact he told me he had spent some time before he made the call to figure out how to break this news to me.
I think he already knew me well enough to know that I would think it was somehow my fault. I doubt that I am alone in thinking that I was the cause of my own heart failure. But he also knew me well enough that I was following instructions to the letter. Another doctor had tried to assure me early on that we it is possible that we may never know what caused my heart failure, and that chronic conditions like this can have many causes beyond the patient. I think this is a normal question that each patient asks. But it becomes important not to get obsessed about the answer, or in some cases, the lack of a definitive answer. Otherwise you may not be able to move forward.
To help me get down the road as far as I have, I have decided that I am not to blame for my heart failure. And this is a good thing, as there are many more important questions than: Who is to blame for my condition? There are questions that are more relevant, because their answers will help empower me and enable me to successfully manage this chronic condition.
But let’s go back to the fateful phone conversation. My cardiologist then told me that in addition to seeing the heart failure doctor, he wanted me to come in and meet with him and my heart failure nurse. Of course, I agreed to get on his calendar as soon as possible. But it was at night and there was no one to make my appointment. But I did put the night hours to good use. I called my sister, who realized that the term heart transplant might be one I would fixate on for a while, and that I needed another set of ears.
So the next morning I contacted the cardiologist and asked one of the most important questions of my heart failure journey. Can I bring my sister to my appointment? Of course, the answer was yes. In fact, I have seen the advice time and again that patients might want to bring another person with them to doctor appointments. Why? Well, you have to absorb a lot of technical information about your condition, and you also need support in asking questions that will help you make informed treatment decisions.
During my meeting with the cardiologist, he and the heart failure nurse recommended that we upgrade my pacemaker device to an implantable cardioverter defibrillator. Between the two of us, my sister and I asked an array of questions about the procedure, the risk, the consequences of a defibrillator, and how the implantation process would work. But I then asked a question regarding an alleged side effect of the ICD knowing that the answer might be intimidating. You see, I remember that one of the law enforcement officers I had worked with told me that a friend had a defibrillator. His friend had advised that the only way to test the defibrillator was to periodically activate it. This seemed a bit drastic to me, especially since it seems relatively easy to conduct simple diagnostic tests these days to assure that your electronic devices are working. The doctor and the nurse looked at each other as if to say “where do these urban legends come from?” They assured that there would be no periodic “shocks” to make sure my device worked.
It is at the point of the defibrillator implantation that I gleaned more helpful tips to share. It isn’t just the opportunity to ask questions that counts. It is also a great opportunity to listen to your doctor’s concerns. Alas, this is a lesson I learned through what I call the school of hard knocks: when a doctor wants to talk to you, don’t blow off the opportunity because you don’t understand the need for the conversation. This seems obvious, right? I mean the time of a doctor is valuable, so if they want to meet with you to discuss a topic, this should be your most important priority. Well it isn’t so obvious when in your mind there is a competing priority.
So let’s circle back to the advice that I needed a defibrillator because the biggest risk I faced at the time was going into cardiac arrest. My career in the government had involved assessing risk, and helping my agency mitigate or eliminate risk. Obviously, I took this topic seriously. So all you had to do was tell me I needed an upgrade to mitigate the risk of cardiac arrest and I was on it. My immediate reaction was: Can we switch the device out today? Well, not that soon, but certainly within a week or so.
Imagine my chagrin when I got a call from the assistant to the wonderful doctor who would do the upgrade. He wanted to meet with me in a few weeks. I was adamant. No need for a meeting, as I already knew what the risk was and how to resolve it. Just put me on the schedule. So there I was a week or so later in the hospital. As I was being prepped, the doctor stopped in to alert me to the fact that if the device had been absorbed into my body, they would have to reschedule for another date and another hospital where they could lase the device out. The light came on in my brain, and I realized this is probably what he wanted to meet me about. If I had just had the meeting, the procedure could have been initially set in a place where we could immediately lase out the device if necessary. Happily, he was able to get the device out without resort to lasing. But I learned a hard lesson – never assume you know best. Always hear the doctor out.
After the defibrillator implant, I then had the first appointment with my heart failure doctor. My sister accompanied me to the appointment and once again, we bombarded the doctor with questions. My sister asked an excellent question. She asked the doctor to rate where I am on a scale of 1 to 10. The doctor answered it in two ways: So on the scale for the people he treats (people who need heart transplant), I'm at the top of the scale at a 9 or 10. But in the scale of the overall population (including lots of health people), I'm more like a 4, 5 or 6. I am not sure I would have thought of that question on my own. But I am glad my sister thought of it because the answer truly brightened my day and the fear of being wheeled off forthwith for a heart transplant disappeared.
In fact, that answer still does inspire me, although the fact that three years have passed probably means that my health may have slipped just a bit. I mean I am older. But I’m still confident that if I keep watching my diet, exercise and fluid intake, if I take my meds, if I do everything the doctors tell me, if I continue to fuel my faith, and if I continue to be curious about my health – well I think I will continue to do pretty darn good .
I have also learned that it is not just your questions, or the questions of a sibling or spouse that are important. You can learn a lot from the questions that the doctors/nurses ask during your appointments. These questions include: How many pillows do you sleep with? How many flights of stairs can you climb at one time without being winded? When you eat, can you eat a full meal or do you push the plate away after a few bites? These questions and many others are designed to gauge whether the pumping function has deteriorated to the point that the congestion is building around your heart and lungs and making even the most simple activities of life challenging to perform.
If medical personnel ask a question that is a bit vague, don’t assume you know where they are going with it. Ferret out more information. Let me give you this recent example of when I was having my fourth right heart catheterization. I was on the table and someone said to me, have you ever had this before? I said yes, assuming they meant a right heart cath through a vein in the arm and without sedation. What I should have asked was: What do you mean by “this”.
Why? Because they immediately put a blue mat over my head. The next thing I know, the doctor came in and inserted a catheter into my neck. If they had told me it was through the neck, I would have asked what the process was, did I need to be careful about say swallowing, or talking, or even breathing during the procedure. Thankfully it did not take more than 10 minutes, and I attempted to move as little as possible from the neck up.
So I think I have demonstrated the importance of asking and even answering questions when you are in a medical setting. But you might say – geez, I am not good at asking questions. They always occur to me after I leave the doctor’s office and not while I am there. Not a problem. That is why God invented the worldwide web! There are a number of good websites that school patients on the types of questions to ask. Here are a few: the American Heart Association, Cardiosmart, Heart Failure Matters, Cleveland Clinic, and the Mayo Clinic.
When I worked as a lawyer for the government, I would sometimes encounter clients who were hesitant to ask me a question. They would always say something like: I’m sure this is a bad question. I would always reassure them that the only bad question was the one that you failed to ask. That is still my attitude today, even more so. Because you need to know as much about the enemy you are fighting, and the tools that are at your disposal, in order to advance your position in the fight against heart failure. So at your next appointment, do not curb your curiosity. If you have questions, let them flow. Because each fact you uncover leads to more success in your treatment.
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.