Transplant During the Covid-19 Pandemic: Part Two

Part One Recap: I was hospitalized in March 2020 to wait for a heart, was transplanted on March 23, and was alone as an inpatient due to COVID visitor restrictions.

I got home from my transplant in April and was so relieved. Yet COVID was still leading to changes that were unexpected. One of the things I came home with was a rollator, which is like a walker but with wheels. I needed to walk a half to a whole mile (cumulatively) a day, and we were lucky that April in North Carolina is beautiful. While we would do these walks, we needed to stay away from anyone else. I love to sew, and one of the first things I did after being home was making cloth face masks for ourselves, friends, and family.

We started using grocery delivery/pick up services so my husband Peter did not have to go into stores. We had pre-prepped some meals that were in the freezer before I went in the hospital but had to make most food. Peter was working from home and could flex some time, but still had to work. I was able to get up, get my own breakfast, etc.

After transplant I was very hungry, in part because of the steroids, and was able to prep most of my own food. We got into a balance. Instead of me just resting, I started helping with meals, laundry, and dishes after being home. It was just too much to manage for one person, and we couldn’t have help in the house like we had planned.

At first, I had follow-up appointments once a week, and they would take all day. Everyone had to wear a mask, and there was still little known about COVID. We would get back, strip, and throw our clothes straight in the laundry. Eventually, my appointments went to every two weeks, then every month, but it was a lot.

When it was time for me to go to cardiac rehab, I waited for them to re-open. Once it did, I wasn’t comfortable with their infection control procedures and ended up getting workout equipment for home—which was very hard to find due to COVID.

We struggled to have a social life. I could only manage video calls for 15-20 minutes without getting exhausted, and we would only see people in-person outside, masked, and if we knew they were as careful as we were.

On one hand, it was amazing to be home and with Peter, and on the other hand, it was really hard and lonely. I couldn’t see either of my parents as they would have to come in from out of state. We couldn’t let anyone in the house to help us clean. There was no one to give Peter a break to help take me to appointments.

As time went on, we somewhat got settled into a new normal. I gained a bit of weight from the steroids post-transplant, but since I didn’t do cardiac rehab and I couldn’t go do things I’d normally be allowed to—like go grocery shopping or being at work—I wasn’t losing the weight. It never occurred to me how much movement I got in a day just walking up and down the halls.

I’ve been working at least part-time from home for four months post-transplant, and moved to full time shortly after. I work as a clinical social worker on research and seeing patients for therapy, at the same hospital I got my transplant. This was all able to be remote, which was a silver lining, as I get my insurance through my job and needed to be working. I was lucky to be included in one of the early vaccine groups, and at my one-year appointment I got an antibody test to make sure the vaccine worked. The test showed that I made some antibodies, but not enough to be counted as fully immune. I figure that is still better than no antibodies.

Transplant was a miracle for me, and in so many ways, I am doing much better at a year post-transplant. At the same time, this year has been one of the hardest of my life, and COVID definitely contributed to it being even harder than it would have been otherwise.