This is a post originally published in July 2014 on a family blog I used to write. It details the moment I first learned my heart was failing and what my life was like living with a sick heart for the next ten years. This post was titled “10 Years” but now it’s been 17 years since this phone call and appointment. I am very lucky to have lasted 17 years with heart failure before needing a new heart.
*****
“Hello, this is Linda.”
“Hi, Linda. I’m returning your phone call. But I’m kinda confused. What is this new medication I’m supposed to take?”
“Lisinopril. It helps your heart not work so hard.”
“I didn’t know my heart was working hard. I don’t really want to take another medication. I’m already taking metoprolol…”
“Wait a second… Tracy, have you spoken to the doctor yet?”
“About what?”
“About your test results?”
“Um, no.”
“Okay. Let’s make an appointment so you can come in and review those results with the doctor.”
“Ummmmmm…okay.”
*************
This conversation happened just about ten years ago. I had a routine battery of tests a few weeks before this phone conversation. I went in the next week and my cardiologist explained that my test results showed “reduced heart function.” He wanted to put me on another medication to lessen the workload on my heart and possibly help improve its function. I remember being stoic and inquisitive while receiving this news. It was the first time I’d heard “heart failure” in a doctor’s office. I didn’t know what it was.
I wasn’t expecting this news. I thought I was feeling fine. But in hindsight, I recognize I had been on a very slow, gradual decline. So slow that I didn’t really realize that I was feeling the effects of low heart function. Or maybe I was in denial. Or maybe both. In addition to not expecting this news, I didn’t know what this news meant. It wasn’t the doctor’s failure to explain it well. It was being 27 years old and being told that you have heart failure. The lines just don’t connect.
What I did know was that it was not good. And this fact hit me when I got to my car after the appointment. I sat down. Closed the door. I began to cry because I was scared of the unknown. This news came out of left field and I wasn’t sure what was next. My husband of one month came home from work a couple hours later and found me crying on the couch. I could not explain why the news was so bad. I just kept saying it was “really bad”.
Luckily my doctor did not tell me exactly how bad it was. My ejection fraction — the amount of blood my heart is able to pump with each squeeze — had plummeted from 65%to about 25%. Now this isn’t terrible but it’s not good. It’s not good because you don’t have much further to drop before your organs start suffering the effects of low oxygen. But with new medications, I eventually rebounded to 30-35%. Doctors like to see their patients above 30%. So once this happened, life went along as normal.
Five years later my heart failure got worse, which is another story for another day. But living with a chronic illness is my reality now. I think the thing I struggle with most is judgment. Not others judging me. I know it used to bother me — having limitations and people not necessarily understanding because I’m young(ish) and I look healthy. I’m so over that. What I struggle with is my own self-judgment. When I lay down on the couch to take a break so many things go through my head like…
– Would I be tired like this if I was just a stay-at-home mom?
– Maybe it’s just that I’m getting older?
– Should I push through it and get a little more activity?
And the worst one…
– Am I being lazy?
No need to answer these questions for me. I know the answers logically. But when you are in your 30s with a chronic illness, your equilibrium is always out of balance. When your body aches with fatigue and your chest constricts because your lungs aren’t oxygenating appropriately, obviously something is not right. But I feel like I live a pretty normal life of a 30-something-year-old mother. So when I’m laying on the couch at 2pm in the afternoon when everyone else is hard at work or outside playing with their children, those questions can’t help but creep into my mind. Who knows…maybe it’s good I still question myself. Maybe that means ARVD hasn’t taken me over.
I also struggle with contradiction in my life. Like…
– I made my heart sick by exercise. (No really. I did. The progression/damage of ARVD speeds up with exercise and stress.)
– I attended school for 19 years. Now I stay at home.
– The medications to help my tired heart make me even more tired.
– I have little control over how this disease affects my health — in a society where there are messages everywhere about “taking charge” and “taking control” of your health.
And the hardest one…
– I look and usually act healthy. But my heart is very sick.
I’m a rule follower so contradictions are difficult for me. I like knowing what the outcome will be if I follow certain steps. Especially if I see everyone else following those steps successfully. Every day I’m learning to let go of what I think “should be” and I work to embrace “what is.”
Even with all the self judgment and contradictions, I’m in a much better place today than I was ten years ago crying in my car. The uncertainty about my future no longer scares me. Very honestly, the doctors don’t know what my future holds. They have no idea since my disease is rare and new. There is little data and this disease is very different from person to person. But instead of letting that scare me, I see hope in the unknown. Now that I have stopped overworking my heart with exercise and stress, my progression is going to take a whole new path. I choose to believe my future includes a long, happy life with this crazy ARVD heart.
Ten years. I am so grateful.
Heart Sick 