What I Wish People Knew

I wish people knew that sick people often don’t look sick.

I wish people knew that my biggest fear is not finding a heart match. While I am not afraid of dying, I am afraid of leaving my daughter without a mother.

I wish people knew my biggest fear about the transplant surgery is waking up in the ICU with a breathing tube down my throat and restraints on my hands. Most people react poorly to the breathing tube and try to pull it out. Your brain feels like you are suffocating because YOU aren’t breathing, the machine is breathing for you. Being strapped down also freaks me out.

I wish people knew my biggest fear after transplant is losing my disability health insurance and finding a job with decent health insurance so I can afford my anti- rejection meds and not have these costs financially ruin me.

I wish people knew I have a deep sense of gratitude for my current heart and a deep sense of sadness thinking about giving it up.

I wish people knew how unsettling it is having your life force become increasingly unreliable, irregular and erratic. My heart never beats in a normal healthy sinus rhythm for more than a couple beats. I literally have no steady life rhythm. And the fear of getting shocked from my ICD is always with me.

I wish people knew that it is difficult to admit to others that I have limitations. Especially when I look healthy.

I wish people knew that my boyfriend knows my limitations better than I do. And I love him for paying attention so well.

I wish people knew that even though my disease is called arrhythmogenic RIGHT ventricular cardiomyopathy, the disease affects both my LEFT and RIGHT ventricles. The disease actually started on the left side and then later involved the right. This is uncommon with this disease. So I have a rare variation of this rare disease.

I wish people knew that after 30 years of steady decline, I have no idea what my body will feel like with a healthy heart. That fact is exciting and scary.

I wish people knew how many pills I take every day to keep my heart stable. (Eleven pills in the morning. Thirteen pills at night.)

I wish people knew that I am irritable when my heart struggles because my mind gets easily frustrated by my body’s fatigue.

I wish people knew I only use my disability parking permit when I absolutely need to use every ounce of energy at my destination. Or when it is very hot or very cold. My heart hates extremes.

I wish people knew that during the transplant evaluation I was asked to define my post transplant goals. I responded, “I want to climb a flight of stairs.” And then I started crying thinking about the possibility.

I wish people knew the careful planning and advance rest I do in order to participate in normal life activities.

I wish people knew I don’t ask the universe “WHY ME?” about my genetic disease. But I am very angry that my antibodies are so high and finding a match so difficult. Because sometimes I just want a break and life not to be so dang hard.

I wish people knew that my daughter will need extra hugs, kindness, and patience when I go into the hospital.

I wish people knew how much my heart breaks for my sweet dog. He will not know why I am absent when I am in the hospital for many months. I am his human and I hope he doesn’t feel abandoned.

I wish people knew that illness fatigue is very different than being tired.

I wish people knew that transplant is not a cure. I will continue to struggle with many health issues due to the anti-rejection drugs.