It Takes Time – Don’t Give Up
As a patient advocate, I meet a lot of newly diagnosed patients. Their experience, the fear, and the terror always bring me back to the day I received my heart failure diagnosis. I was devastated, and I thought my life was over. I remember how scary it was learning that your heart, the engine of your body, isn’t working up to its potential. Add in the word “failure” in my diagnosis, and I was a mess.
The first year
A massive heart attack
It took me nearly a year to finally feel comfortable with my diagnosis and condition. In the days leading up to my first anniversary, I found myself anxious and couldn’t sit still. For weeks I had relived that fateful Saturday when a dune hike ended with a massive heart attack, a heart attack that should have won, but I was lucky when it didn’t.
Every Saturday, I remembered it all down to the minute, the ambulance trip, the cath lab, the cardiologist who saved me, the week following spent flat on my back, and the balloon in my heart to help should my heart fail. Being told that I couldn’t do anything like I used to and if it tasted good, I probably couldn’t eat it. The weekly stroll down memory continued for about a year. As I approached my first anniversary, the anxiety was overwhelming.
After the first year
Once I hit one year, I was relieved. Completely relieved. I’m not sure why or how, but there is something about having a year to deal with a traumatic event under your belt. After this first year, I felt that I started to heal. Everything seemed more comfortable to deal with, and I had learned so much over this first year. I’ve heard this is similar to experiencing a death of a loved one, and after one year, you can begin to heal. Maybe I was grieving my past life, but I was starting to heal.
One day at a time
I tell all newly diagnosed patients that it takes time. It takes time to understand what happened, time to understand your condition, time to understand your body, and ultimately it takes time to recover and deal. I tell them to take it one day at a time when I say “one bonus day at a time” because we are the lucky ones, and every day after we’ve survived is a bonus day.
As you go through this disease, its treatments, and its procedures, there will be challenging days. Days where you are too exhausted to stay awake, days when the medications make you sluggish and days are just hard to get through. Tracking my bonus days is one way I continue to cope. Whenever I have a bad day, I refer back to my calendar to remind myself that I was lucky.
It does get better
As of this month, I have over 2100 bonus days. I’ve come a long way. Not all of my bonus days are good ones, but the good days started to, and continue to, outnumber the bad ones.
How many times have you been to the ER due to your heart failure?