I’m a first-time blogger for ACHA. I was born with Shone’s syndrome, went into heart failure at 23 after getting an artificial mitral valve, and was listed for transplant on my 37th birthday—February 28, 2020. While I had known for over a decade that I would need a heart transplant someday, I underestimated the effect that outside factors would have on my recovery.
The biggest outside factor? COVID-19.
I signed up for a research study that would let the team have access to more types of hearts (not currently available for transplant in the United States). Since my evaluation a few weeks beforehand, I had continued to decline, so the team decided I would stay inpatient until they found me a heart. We had been making plans knowing this was coming.
My husband Peter’s parents would come out to help when I got the transplant, as would my dad and stepmom. After a few weeks, my mom and stepdad would come out to help. Peter’s mom would come back after they left. Friends were going to help, and we were going to hire a maid service to clean the house once a week.
As I went inpatient on March 7, 2020, news of COVID was just starting to come in. I had a “dry run”—which is when they think there is a heart for you, but it doesn’t work out—the next day. My dad, stepmom, and in-laws had flown down, and they visited me in the hospital. Not soon after, visitor restrictions began, so my in-laws went home.
I had a fever from the anesthesia and my oxygen levels were low, so when the COVID restrictions hit the hospital, I was one of the first to land into COVID isolation while they waited on a negative test. This meant three days of waiting in an ICU room by myself—nothing with me, alone, frustrated, and not able to be re-listed as active for a heart until my COVID test came back negative.
The next week there were further changes to visitor restrictions, and eventually my dad and stepmom went home—as I could only have one visitor per day. During this time, there was so much uncertainty. We had daily conversations about what would happen if they stopped doing transplants due to COVID. Everyone was hoping to find a heart as soon as possible.
The morning I got my transplant, on March 23, 2020, they put a total visitor ban in effect. While Peter stayed with me until I went into the OR, I had no one for the two weeks post-transplant. This was a crazy time in the hospital, as staff were asked to wear one mask a day, doctors weren’t allowed into rooms to round due to lack of PPE, and I had literally lost my voice after the repeat intubation and couldn’t be heard from the doorway.
While everyone tried their best, not having anyone there with me was so hard. There were things I couldn’t advocate for because I didn’t have a voice loud enough. I could video chat with Peter, but I was so weak I couldn’t hold up the phone for more than a few minutes.
While I am so, so grateful to my team, there were things that happened that were somewhat traumatizing, and a lot of it stemmed from the COVID restrictions and not being allowed to have a person there with me. The one time I saw my husband in person during this time was when he brought our dog for a walk and we coordinated to have the nurses wheel me to a hallway to wave at him.
My in-laws had driven back to support Peter while I was in the hospital, but since so little was known about COVID, they left before I got home to be extra safe. Peter and I were on our own as I went through the recovery at home—no one could come stay with us, we couldn’t let anyone really help, and all our plans had to be thrown out the window.
I’ll share more about my recovery in Part 2 of my blog.
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