Wait For It

I am a late adapter. Last month I purchased my first iPhone without a home button. Last summer I traded in my 2008 CRV and bought my first vehicle with Bluetooth so I can finally make hands-free phone calls while driving. I don’t mind waiting for new and expensive things to become old and affordable. Maybe it’s the Midwesterner in me. It has served me well especially now that I am disabled and not working.

Almost ten years ago the musical Hamilton came out. People were wild for it and tickets were expensive. Although I love musicals, I made a point to not listen to the soundtrack in fear of loving it and being sad every time Hamilton came to Minneapolis. I figured I could see it sometime in the future when the ticket prices were more affordable. At some point I lost track of it and forgot about it.

Earlier this month, my friend Jill mentioned how much her girls love the Hamilton soundtrack and the song Wait For It. I finally gave it a listen and I instantly fell in love with that song. I mean I literally waited for TEN YEARS to listen to it. And the message of the song resonated with me and my heart transplant journey. For example…

“I’m not falling behind or running late, I am not standing still, I am laying in wait”

During the summer 2009, we were living in Virginia and doctors wanted to list me for transplant. I had a four-month-old baby. I desperately wanted to get back to my doctors in Minnesota with hopes that my Minnesota doctors could stabilize me and pull me off of the transplant trajectory. So we moved back to Minnesota in December 2009.

I had my first appointment with my transplant doctor in January 2010. We did not have daycare for Ava so she came with me to the appointment. I vividly remember sitting in the doctor’s office with 9-month-old Ava eating Gerber puffs in her stroller. My doctor and I talked about my heart status, treatment options to improve my function, and next steps.

I remember picking dropped puffs off the floor and telling my doctor, “My biggest goal is for Ava to graduate high school before needing a transplant.” My doctor’s eyes shifted from analytical to sad. He paused for a moment before responding with forced optimism, “That is a good goal to have.” His forced optimism was appropriate given heart failure statistics. But now I am two years and five months away from that goal. Considering how sick I was 15 years ago in that doctor’s office, it is amazing I have almost accomplished that goal. I credit this fact to lifestyle changes (more rest and stopping exercising), medical therapies and an amazing support system of family, friends, and doctors. So I have spent years hoping to put off and wait for transplant.

Fast forward 12 years to 2021… My doctor told me it was time for heart transplant evaluation. I knew it was coming. I had put it off for over a decade. But even with the years of anticipation, I was scared to cross the transplant bridge. I worked through a jungle of emotions the next six months and then I was ready for it. I was ready for my post-transplant life to begin!

Then my high antibodies were discovered. This meant I needed to get sicker so I could move up the list in order to get matched with a heart. For the next two years I wanted to get sicker in order to get the transplant. But my disease went dormant and my deterioration had plateaued. I was stuck at status 4 and I needed to Wait For It yet again.

Since my last post in May, I have been working on being content with my current heart and being at peace with the wait. Hearing the Hamilton song has nudged me toward these goals.

“I’m not falling behind or running late, I am not standing still, I am laying in wait”

It’s been a mini-journey and today I am again happy to be waiting for an undetermined amount of time. (Read my last post Sabrina to learn how my friend also helped me find peace in the process and the wait.) As I look forward to 2025, I am hopeful that I remain stable and I don’t require transplant. I wish health, joy and love to all of you this holiday season. If you have a free moment, listen to the Hamilton song Wait For It and send some positive vibes into the universe for me and my heart.