Sabrina

Many years ago I met another ARVCer named Sabrina. She was a young mom like me and lived in West Virginia. While our struggles with ARVC were a little different, we bonded over our shared roller coaster journey with ARVC.

She struggled for years with finding doctors that could treat her properly. Last summer she finally got approved to be seen at Johns Hopkins in Baltimore. Johns Hopkins has one of the only research programs for ARVC in the country and they know the ins and outs of our unique condition. She got an appointment in September and Johns Hopkins immediately hospitalized her to wait for a liver and heart transplant. (Her heart was failing from ARVC and her liver was failing due to her heart failure.)

We messaged throughout her hospital stay. After a couple of heart offers that didn’t work out, her doctors were finally happy with a heart and liver match. Our last communication before her transplant surgery was full of peace and hope. Unfortunately, while the transplant surgery was a success, she had a series of strokes after the surgery and she never woke up from sedation.

It was shocking to me that her story was ending this way. It had not occurred to me that she may not make it through the surgery. I was angry that I had not prepared myself for this outcome. I was angry her story was ending like this after so many years of fighting and waiting. I was angry at this reminder that transplant is no guarantee of life.

Now, a couple months after her passing, the anger has subsided. But I am sad for her daughters and family who are getting ready to celebrate their first Christmas without her. I am sad that I can no longer check in with her on days I am discouraged and struggling. I am sad I cannot do the same for her. But I hear her in my head on those days I am struggling. She would always tell me, “Trust the process.” I also have a refreshed appreciation for living with my failing heart – even as I struggle some days. I am lucky to be here. So many people with this disease are not so lucky.

Trust the process, Tracy. Trust the process.