Making Connections in the Heart Failure Community

My journey with heart failure began over twenty three years ago. Honestly, it doesn’t seem like it’s been that long. Thankfully, I find myself in a better space mentally and socially.

That is in part due to the heart communities I’m connected with.

Finding people like me with heart failure

My PPCM diagnosis came in 2002, before the social media boom.

Finding other new mothers with similar stories was seemingly nonexistent.

For years, I felt alone. A sort of numbness, that no one understood what I was going through. I was naive in my thoughts, and unaware of the number of individuals impacted by heart failure.

When heart failure symptoms get worse

I managed my heart failure for years, before my symptoms were exacerbated following a spring break trip with my sons in 2010.

I just couldn’t seem to regain my strength, had a persistent cough, and swelling that would not subside.

My health began to deteriorate as my ejection fraction declined; and I was presented with the option of receiving an LVAD (or heart pump). I found myself in familiar territory. Looking to connect with others who could relate to my journey.

Every heart failure experience is not the same

I still remember the first LVAD patient I met. Unfortunately, it wasn’t the best experience.

Although I had a desire to hear from others I quickly learned that everyone’s journey is unique.

Accepting with the good, there also comes the bad wasn’t anything new for me. However, sharing in someone else’s struggles was.

Little did I know, this experience would shape how I connected with others in the future.

My LVAD experience: One of a few

With an ejection fraction of merely five percent, I received my first LVAD in 2012. I was officially bionic!

I had a mechanical heart pump being operated by an external controller and two batteries. At the time, there were less than ten thousand LVAD recipients in the world.

Finding my community became even more important to me.

Thanks to social media, and community support making those connections were more accessible this round.

I joined LVAD and PPCM Facebook groups, attended monthly support group meetings, and leaned on my village of family and friends.

I tapped into my hobbies, joined a local gym, and I was enjoying my new lease on life.

Meeting someone like me with an LVAD experience

Then when I least expected it, I was approached by my team with the opportunity to meet another patient considering LVAD implantation.

I imagined how this meeting would go. I wanted to walk in the room, and be what wasn’t expected.

Hair done, lashes done, in my skinny jeans and stilettos.

I wanted to show that you can continue to live beyond your diagnosis. Well, it didn’t go as planned. Lol.

Transparency, connection, and a life changing experience

While at a regular clinic appointment I was asked if I had time to meet with the patient and a few of her family members. She was also there for a clinic appointment.

You see, I was dressed for the gym and headed there following my appointment. Of course, I still said yes.

I walked into a conference room to meet Ms. Candy and a few of her family members.

Ironically, my gym attire seemed to inspire the hope I wanted to portray. I answered questions with transparency while sharing the ups and downs of my journey.

We talked, laughed, and made a connection. This was a life changing experience.

I was witnessing my pain being used for purpose; and opened the door to a community I had longed for.

What does community look like for you?

Community doesn’t look the same for everyone, and that’s ok.

Just as my path to connecting with others belongs to me. If you’re looking for support, friendship, someone who understands through a shared experience I encourage you to connect with a heart failure community like the one you’ve found here at heart-failure.net.