In August 2014, while I was relieved to have the defibrillator upgrade procedure behind me, this did not eliminate my anxiety. I simply focused it in a new direction. Now I had to get ready to see the advanced heart failure doctor. The appointment was coming up in a few weeks. The purpose of the appointment would be to see if I was in the category of patients who would need a heart transplant within one year.
In the time since I had been under the care of an electrophysiologist and a cardiologist, the need for heart devices and heart medications were options that I could comprehend. I would have preferred not to have to implement these options, but realistically speaking, I knew they were necessary and I could cope with them. Plus, so far I had been able to be under the care of a cardiologist and cardiac nurse and keep my own heart. I had never even considered that I might need a heart transplant, nor what that would entail in terms of process and risks. It would be nearly impossible to avoid worrying.
It was fortunate that I had an 11 page patient questionnaire to complete in advance of the appointment. The process of completing the form helped me to realize that I might be a healthier heart patient than my echocardiogram would lead the doctors to believe. There were some questions regarding whether I got short of breath when in bed, when at rest, when bending over, when brushing my teeth, or when walking a given number of blocks. I was never short of breath doing any of those things. So that was a good sign – right?
The questionnaire also asked how many pillows I needed to sleep at night. Why is this is an important question? The answer is that heart failure patients can become short of breath while sleeping. The congestion gets caught in their lungs and they have to use a number of pillow to clear the congestion. I had always used just one pillow, and it was a relatively flat pillow. So this was a good sign – right?
A whole page of the questionnaire was devoted to pain: how often did I have pain, how long did the pain last, how bad the pain was (with a number of adjectives used to describe and rate the pain). I can honestly say that my stamina had markedly decreased, in my opinion, with heart failure. But I never had any episodes of pain. So that was a good sign – right?
Additionally, I had really good answers to a series of important lifestyle questions: never smoked in my life, had maybe a drink once a month or so, and did not do drugs. My diet was really good, and for the last year, I had eliminated salt from my diet. I was the model in terms of diet and stayed away from all the vices. So these were all good signs – right?
Finally, there was a section seeking information on whether heart failure had prevented me from living life the way I wanted to. This section had a series of questions asking whether you had been prevented from doing certain activities. Other than causing shortness of breath and anxiety, I really couldn’t say that heart failure had prevented me from doing many of the activities mentioned. I realized that it was the anxiety that was the biggest problem I had to manage, and that has remained static throughout the 3 ½ years since I received my diagnosis. (I will discuss how I have been dealing with this in a later post.)
So I was fortunate that the process of completing the application served to temper my anxiety a bit. Also, conversations with my sister were helpful, as she continued to remind me that the cardiologist wanted me to see the advanced heart failure doctor as a precaution. The best time to get to know such a specialist was long before you needed the heart transplant – not at the time the crisis occurs. So it was important for me to keep in mind that the referral was not a verdict that I needed a heart transplant. It was more of a process to determine where I fell in the universe of heart failure patients.
On August 11, my sister and I traveled to a nearby hospital to visit the office of the advanced heart failure doctor. I was not familiar with that hospital and I was glad my sister was there to help me find my way – both on the highways and in the crowded parking garage. We arrived with plenty of time to spare to check in and to assess the environment we had just walked into.
There was one thing that my sister and I immediately noted. I was one of the few patients who was not in a wheelchair and/or did not have an oxygen tank. So this seemed to be a good sign, right? The front desk personnel were very efficient, and we really did not have to wait long before I was called back into the medical offices. So my sister and I headed on back so that my vital signs could be taken, and I could turn in my medical questionnaire to the nurse.
After finishing with the preliminaries, the nurse left the examining room to get the advance heart failure doctor. When he came in, my sister and I immediately liked him. He was very personable, energetic and extremely intelligent. We came to find out that not only did he know my cardiologist, he was also acquainted with my cardiac nurse. It seems that at one time before she moved to this area, she had headed a heart transplant program in another state. She had interviewed the advanced heart failure doctor for a job at her facility. It gave me comfort that the people who would become the key members of my cardiac team not only knew each other, but had an extended history and clearly admired and respected each other.
As we went over the information on the questionnaire, I got the feeling that at least on the surface, I was not the worst case this doctor had ever seen. While I did have a low ejection fraction, he indicated that the echocardiogram results, while helpful, are not the determinative factor. There is some subjectivity in interpreting the echocardiogram. There are other tests that woudl need to be performed to determine how serious my heart failure was.
So the first thing that the doctor asked me was what was I doing in a few weeks? Given the fact that I was retired and did not have a heavy social calendar, I didn’t have anything planned that could not be rescheduled. So he asked me to meet him on a Friday morning in a few weeks at the pulmonary lab for a treadmill stress test. I was instructed to just wear comfortable clothes and shoes, to take my medication as usual, and to eat a light breakfast.
The second thing was that he wanted me to have another cardiac catheterization. Because I was very familiar with the hospital that my cardiologist was associated with, I asked if I could have the cardiologist perform this test. He said that this was not a problem. I really appreciated that flexibility that both doctors have shown throughout this time in accommodating my requests and sharing information with each other. It really does reinforce that I am working with a team of medical professionals, not just separate doctors.
The third thing he asked me to do was to tremendously increase my dosage of the beta blocker (carvedilol). This is one of the drugs that can lower blood pressure, so he didn’t want me to make the increase all at once. But over a period of the next month or so, he wanted me to try to gradually increase the total dosage from 6.25 milligrams per day to 50 milligrams per day. I was eager to try to reach the goal as soon as possible, and hoped my blood pressure would cooperate.
So I left the appointment feeling much better. I thought that there was a chance that I would be able to keep my own heart. I was glad of this. Weak as the blasted thing had become, I had kind of grown attached to my heart.
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.