every beat counts

In January 2009, I was diagnosed with dilated cardiomyopathy. To those who know me, this is not new information. It has changed my life dramatically, altering my diet, exercise habits and social behavior. In the last 4 and half years, I have coped and adapted. I've learned a lot about food and established a healthy yet satisfying low-sodium diet for myself. I've embraced new forms of exercising and done my best to maintain my physical conditioning. Socially, the road has been harder, but I have maintained pertinent prior relationships and established meaningful new relationships, especially with a beautiful woman whom I am proud and ecstatic to consider the love of my life.

All things considered, I'm doing great...

Except I'm not.

Like a lot of cardiomyopathy patients, especially young patients, I've dealt with varying levels of depression and emotional hearthache. The initial shock and fear was difficult to overcome, which is not to say that I have completely. But with successful treatment of my condition came courage and confidence. As I began to realize that my diagnosis would not compromise my hopes and goals, I actually began to believe that my hopes and goals were still attainable.

But as the feelings of isolation and despair dissipate, recurring fears linger and continue to hinder my daily life. I find that I have irrational fears about my health, which lead to anxiety and actual physical feelings that there's something wrong with my health. Relaxation and mindfulness practices help to alleviate the tension and anxiety, but they have not been successful in terms of eradicating the fears that plague me. Even though my ejaction fraction has risen to a normal (in fact, ideal) level in four years time, I remain paranoid that something is not right.

While I can confide in some of those closest to me about these feelings, I also fear that by voicing the same/similar fears over and over, I am tuning those people out to me.

I want to be able to feel what I know - that I am doing well and am very, very healthy. Sadly, this remains an increasingly elusive feeling as I deal with reoccurring muscle and gastrointestinal issues that I fear are related to my heart, but are likely related to my anxiety.

I'm left to wonder, can anyone relate to how I'm feeling? Has anyone else been there before or are you still there? I've had stretches where I've felt great, consistently, and have not given much thought to such fears. How do I capture those stretches in permanence?

I've never been very vocal about living with a heart condition, especially not in this format. But maybe it's time to change that? My ultimate goal is to not have to think about how I'm feeling. Maybe confronting it is the best way to do that?

Obviously, I don't have the answers and I don't expect that any one person does. But maybe by embracing more open forums and conversations of the issues with which I'm struggling, I can find the calm I so desperately want, and need. Again, I don't know, but maybe you can help?