On the morning after the phone call from my cardiologist, I was scared. In all my conversations about my heart issue, I had never heard the term “heart transplant” mentioned. The whole concept was just mind boggling. Couldn't the doctors find something else to do to improve my cardiac health that did not involve taking my current heart and replacing it?
In all fairness, the cardiologist didn’t say I needed a heart transplant. He said that he wanted me to see the doctors who specialize in advance heart failure and heart transplants. But as my sister accurately observed, I was going to fixate on that term and needed someone at the appointments to hear everything else that was being said other than the words "heart transplant".
So the first thing I did that morning was to let my cardiologist know that my sister would be attending the upcoming appointment at his office. He was so accepting of that, indicating that it was an excellent idea to have someone else at the appointment with me.
The next thing I did that morning was to contact the advanced heart failure clinic. The specialist who scheduled the appointment was so personable and so understanding. She said that there would be absolutely no problem with my sister coming to the appointment with me. We scheduled something for about a month later, and she sent me an e-mail filled with incredibly helpful information – directions to the office, paperwork to complete ahead of time to speed up the check-in process at the office, etc.
As promised, my sister traveled to my home so that she could accompany me to the appointment with my cardiac team. The first thing, and probably the most important thing that happened was that they set my mind at ease. The cardiologist said that the fact that they wanted me to see an advanced heart failure/transplant doctor was not an opinion that I actually needed a heart transplant. But because my echocardiogram score had deteriorated, they wanted to make sure my condition was evaluated by this doctor. They emphasized that the time to begin care an advanced hear failure doctor was way before, if ever, you needed a heart transplant. Of course, I still was frightened by the term heart transplant, but at least it did not seem like this was an inevitable option.
The next thing they told us was that they had analyzed my records and my test results. They had reached the conclusion that the biggest risk to me at this point was the risk of cardiac arrest. Consequently, they recommended that my heart device should be upgraded to include a defibrillator function. My sister shot me a look that clearly said: You never mentioned this to me.” I gave her a shrug and a look back that clearly said “News to me.”
At this point, I remembered the story that a former colleague had told me about a friend of his who had a defibrillator. I recounted the story to the cardiac team, asking if it was true that the only way the doctors could test whether the defibrillator was working was to activate it. I was very frightened on that day, but now I can laugh as I remembered their response. My cardiologist looked at my cardiac nurse and they both rolled their eyes. They told me that this was not true. And like me, they wondered where these urban legends begin.
My sister returned to her home after we met with my cardiac team. But she assured me that she would clear her calendar to be available whenever I could schedule the heart device upgrade. We also discussed that it was important for me to contact an attorney so that I could prepare a will, and health related powers of attorney and living wills. Yes, I know that it is hard for people to believe that I had been an attorney for 30 years and still did not have my own will. But I had always felt so healthy, and I had no children to provide for, so a will was not something that ever seemed a priority for me. But now that it had been brought home to me that life was indeed very fragile, the need for a will and health related documents became a definite priority.
There is one thing that I have come to realize over time. When the word “risk” is used in a sentence that has to do with you or something under your control, you need to pay attention. It seemed to me that given the law of averages, I likely was not going to have cardiac arrest in the next 10 minutes. But I also recognized that the longer I went without a defibrillator, the more likely the risk became. So I made it a priority to schedule the procedure to “upgrade” my device.
I looked at the scar in the collarbone area where my pacemaker currently resided and just sighed. It just looked to me like the scar was beginning to fade. So in the next week or two, I would have a new scar in its place. On the other hand, even though I could tell I was retaining water and perhaps becoming more winded, I seemed to still have some energy to do some exercise. Maybe there was a silver lining in my clouds after all, and the addition of a defibrillator, as well as being evaluated by the advanced heart failure doctor, might help me figure out how to maximize that silver lining.
It gave me some comfort to refer to the procedure to put a defibrillator/pacemaker inside me as a device “upgrade”. I mean, how many times at work had my hardware or software been upgraded for my laptop or my iPhone? I decided to assure myself that the process had to be as easy as one of those computer upgrades. It made the procedure seem much more routine, and the need for the device seem much less risk-based.
I remembered what the cardiologist had told me about how big and bulky the pacemakers were when he started practicing cardiology. I was grateful that medical technology had improved so much that a relatively small device could keep my heart beating normally and could avert cardiac arrest. I can also tell you that although it sounds unbelievable, I actually looked forward to having the procedure done because it would provide me with the ultimate protection from a very serious and scary risk.
Once I had the procedure behind me, I could return to a "normal" life as Energizer Bunny, version 2.0!
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.