In the August 2018 Washingtonian Magazine, there is an excellent article with the title "Open Hearts". It is about two young patients who met while they were in the hospital for heart transplants and are now planning to get married. The article explains the trials they endured as a number of unexpected complications arose after their transplants. But they persevered and are alive and well and in love. What a great development in their story!
In reading about the young woman’s experience with heart failure, I realized that there are some similarities with my story: We both experienced intense fatigue that was a sign of the onset of heart failure. We both experienced an extremely low ejection fraction. We both share the same outstanding heart failure doctor. The last similarity probably keeps us sane and alive.
But this post addresses something else we share: a failure for some doctors to take our concerns and physical decline seriously. I know that I have struggled at times during the past 5 years to understand why my concerns were perhaps minimized by my then primary care doctor. But once the heart specialists found out what my heart problems were, and started to implement solutions, I decided it was more constructive to put the months of frustration behind me and concentrate on managing my condition.
But reading about the young woman’s experience caused my feelings of frustration to bubble up again. So what is it that happened to both of us? The young woman was probably 17 years old when her heart failure began. Like me, this young woman experienced crushing fatigue. Unlike me, she also had a racing heart. The young woman was understandably anxious and raised these complaints with her doctor. Similarly in my case I was also experiencing crushing fatigue. But I did not have a racing heart. Instead, I later learned that my heart was likely beating at an abnormally low rate. I also complained to a neurologist and my primary care doctor, about how fatigued I felt. Fatigue was an understatement, as it felt like my life was slipping away by inches.
For both of us, our doctors overlooked our physical symptoms and chose to focus on an emotional cause. In the young woman’s case, the doctor attributed her symptoms to anxiety resulting from senior year stress. When her anxiety increased she was admitted for a week to a psychiatric facility and given drugs that did little to improve her symptoms.
In my case, after three months of increasing fatigue and dizziness, endless medical tests, and decreasing hope for a definitive diagnosis, I complained to my primary care doctor about how frustrated I was and that I was not sleeping well. In fact, I was so frustrated that I cried. I believe I may have asked him for something to quell my anxiety so maybe I could sleep at night. He interpreted my words (and probably more so my tears) as evidence that I was depressed and gave me a prescription for anti-depressants.
Now to be fair to our doctors, both the young woman and I had histories of anxiety. But despite this shared history, I believe that the doctors should have given us credit for being in touch with our bodies, understanding that something was drastically wrong with our physical health, and articulating to the doctor what our physical symptoms were. Yes, we may have seemed anxious but doctors put yourself in our shoes with our symptoms and let me know that you could be as cool as cucumbers! It bothers me that with the hell we were going through, we had no credibility when we tried to attach a diagnosis to that hell.
Happily, the corner was turned for the young woman when her parents insisted that her pediatrician order a chest x-ray. Thank God for the persistence of these parents. The result was an evening phone call telling the parents that their daughter had an appointment with a pediatric cardiologist the next morning. The cardiologist used terms like “enlarged heart” and “heart transplant” and ordered the mother to get her daughter to the hospital as soon as possible because doctors were waiting for her.
In my case, the corner was turned because of a holter monitor test that had been performed about four days before I visited my primary care doctor and was told I was depressed. The test entailed wearing the monitor for 48 hours and keeping a diary of any events or symptoms that seemed unusual or disturbing. Several days had passed after I turned in the monitor and the diary before I heard anything. But thankfully an electrophysiologist had reviewed the monitor and diary and was about to put a name to my condition.
I had the appointment with my primary care doctor that resulted in an antidepressant prescription on a Wednesday. I did not want to take the drug, but since I had not yet heard results for the holter monitor test, I felt I was out of options. So I took the antidepressant that night. On Thursday morning, I had voice mail messages on every phone I had (work, home, work cell and personal cell) telling me to call the electrophysiologist's office. They wanted me to come in early the next morning to talk to the electrophysiologist. I asked if there is anything I should not do in the meantime. I was told to avoid any conduct that had caused me to note a reaction in my diary. I responded something like, "Well that is pretty much everything I do. I’ll see you tomorrow."
On Friday morning, I learned that I had a very low heart beat (also known as bradycardia). I made an appointment for the next week to have a pacemaker implanted. I finally felt like some progress was being made, and I have felt very well cared for by a host of medical professionals ever since that heaven-sent Friday morning appointment.
So let’s examine the reason for my frustration. Why is it critical to obtain a definitive diagnosis as soon as possible? In the young woman’s case, she was found to be in dire need of a heart transplant. This is not something that can be accomplished immediately; it requires an application process, an insurance approval, and other practical and logistical issues. The sooner the need is recognized, the better.
In my case, I was diagnosed with bradycardia and needed a pacemaker. According to the Cedar-Sinai website: Bradycardia can be life threatening if the heart is unable to maintain a rate that pumps enough oxygen-rich blood throughout the body. Cardiac arrest is one of the life-threatening complications that can occur when a diagnosis of bradycardia is delayed. So in my case, time was also of the essence.
In less time sensitive cases, it is still important to identify the medical problem and a treatment as soon as possible. If you need to get on medication, the sooner you start to put the pills in your mouth, the sooner you could be able to reverse adverse impacts brought on by your condition.
In the case of heart conditions, diabetes, or other chronic conditions, following an appropriate diet is critical. The sooner you know diet substances that can cause issues (salt, sugar, fat, fluid, etc.) the sooner you can turn your diet around and perhaps improve your symptoms.
Even with weakened hearts, exercise can be a key factor to strengthening a heart that has been damaged. The sooner you know the types of exercise that can best heal your heart, the sooner you can pull out a pair of sneakers and hop on the exercise bandwagon.
After reflecting on this over a period of five years, my point is not to find fault with doctors. There are a number of physical conditions that can cause some of the same symptoms the young woman and I experienced. The treatments for these conditions can be very different, so it is critical to obtain a definitive diagnosis, often through a series of protracted blood tests and procedures. Sadly, there is not a one size fits all procedure that can test for each and every condition all in one fell swoop.
So as frustrating as it sometimes seems, diagnosis is usually a trial and error thing until they hit on the right cause. Of course, there is also the fact that each test has to be scheduled and appointments are not necessarily available immediately. Finally, there is the fact that the young woman and I just looked so healthy because our bodies were compensating for the weak hearts. But that compensation will not last forever. It cannot be said enough times - Time is of the essence!
I also recognize that it benefits the patient tremendously when a doctor correctly diagnoses a mental health disorder. But what happens when there is a really serious physical issue going on that causes a patient to be unavoidably anxious. (It is hard to escape anxiety when you have unexplained black outs or have a consistent, draining fatigue!) There will still be a serious condition feeding the anxiety and so the prescription for antidepressants or anti-anxiety drugs alone is not a practical solution.
I also do not recall if the doctor used any diagnostic tools (blood tests, questionnaires, etc.) to help diagnose a condition of depression. I should have been more proactive and questioned the evidence of a depressive state. But the fatigue and disorientation in my life had become so pronounced that it took every shred of energy for basic survival, and I just had no energy left to debate treatment protocols.
So while I believe I have a reasonable perspective on the challenges doctors face when treating patients with baffling symptoms, I also think there must be a balance. And that balance comes down to finding the cause for the troubling physical symptoms that may be causing the anxiety. It also then requires treating the physical issue as well as helping the patient cope with understandable anxiety, either through a mental health therapy, prescriptions or maybe both.
Keeping the concept of balance in mind helps those of us with chronic conditions because the troubling symptoms can recur, increase or new ones appear out of nowhere. The key becomes not taking your initial or even renewed good health for granted. So now I have a new attitude. The need to help my doctor apply a balanced approach also means that my perspective has to be balanced. I must approach our appointments as logically as possible. In other words, I can’t lose my objectivity because I need it to accurately and completely describe my symptoms. Logical and clear reporting of my symptoms and overall health increases the ability of the doctor to diagnose and treat my conditions.
That does not mean that emotional responses have no place in our lives. They are critical to expressing how happy you are, or portraying some aspect of sadness in your life. But to me, emotion now has no place in explaining my predicament to my medical doctors. I save those feelings for a therapist when needed, or for my conversations with a God who can help me cope.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.