PRETTY LADY CHRONICLES: Being a Patient Is a Process (Part 2)

Editor's note: Check out Part 1 and Part 3 of this series.

Managing an ever-changing “new normal” isn’t always easy. It can take a physical, mental, social, and emotional toll. One moment I’m on a road to recovery, and in an instant that can all change. The process of being a patient is just that - a process.

There is no user manual

Being a heart failure patient doesn’t come with a user manual. It’s life lived through trial and error consisting of routine appointments, lifestyle changes, and hospitalizations. At times I’ve felt alone or that no one quite understood what I was going through. The abrupt changes, transitions, and constant new normal are not so normal. It took a while for me to even realize this part of the process.

I’ve been fortunate during my journey though. I’ve been able to connect with other families and caregivers; as well as other patients, and “survivors.” Through this support network, I learned I do not have to cope with this process alone. Over time, I began to own who I am as a patient.

Heart Sisters & Heart Brothers

Once I began to own being a patient and the purpose it plays in my life, I was able to advocate in support of others. Patient advocacy has been a rewarding part of my process. This has been a two-fold blessing. It’s provided me with the opportunity to assist others embarking on this journey. Being able to connect with others, sharing my personal experience, and providing some insight on what they may endure as a patient has strengthened me in unimaginable ways.

At the same time, building those connections with others living with heart failure has caused me to come face to face with a harsh reality.  The process of being a patient and living life with a chronic illness also comes with no guarantees. It would seem the more Heart Sisters and Heart Brothers I gained, also meant the odds of losing one of them may increase.

Processing loss

Any loss of life is heartbreaking, and over the past year, I’ve come face to face with that reality. The loss of a fellow heart warrior is hard, and a loss that seems to hurt differently. After losing a Heart Sister, and Heart Brother I was left questioning my own mortality.

I lost a Heart Brother who patiently waited six months in the hospital for the gift of life through a donor. He would receive that gift but never come home. I began to question if I would face the same fate.  Almost a year to the date, my Heart Sister's circle would lose a young, spunky, and feisty part of our crew. Joi fought, just like Kyle, they had amazing perseverance and strength. However, neither one of them are here today. What does that mean for me?

I’ll be honest, there are days that I still struggle with this part of the process. Then there are other days that I’m reminded of them; and feel a sense of peace and comfort. As much as these losses still pain me, the relationships with my Heart Sisters and Heart Brothers have a purpose for me. I’m hoping these losses will continue to empower me with strength and understanding.

Lessons learned

In life, there are no guarantees. I continue to learn new lessons through the process of being a patient. With each one, I’m quickly reminded that they’re what make my story unique. Although every lesson won’t be difficult, the key is recognizing, understanding, and processing it.