Would anyone check this CaringBridge again? No idea.

It has been one year since my transplant. Basically, I’ll live forever (opinion not based on science). It’s difficult to know what to tell you. Little and a lot has happened since I posted seven months ago. New routines with new things to demand time, but one adjusts. Eventually.

My parents and I are spending the week in Rochester at the Gift of Life House. Just like summer 2019 during evaluation, they check every body system, not just the heart. Dermatology, lung function, kidney function, bone density, you name it. Today I had ten appointments and there's more to come. I might be driving my parents nuts, but we're going from the safety of my home bubble to the big wide world and it's a bit unnerving.

We had promised many caretakers on East Tower we’d stop in during my annual appointments but it’s not allowed with Covid-19. It's deeply humbling to need help to do simple and personal things for months. These were often times of frustration and embarrassment, but looking back now it’s amazing to witness what the body can endure. I loved it when my nurses or PTs from previous units came to see me after transplant and wish I could thank them again and show them how well I’m doing. 

My monthly-ish biopsies were all negative for rejection and infection. My next one is Thursday. I saw Dr. Edwards today and will again at the end of the week. He is a favorite of mine. Today he described it like the longest roller coaster ride that just keeps going up and down and all you can do is hang on. But it will stop. And we will get off. He mentioned the second vaccine announcement this morning. Things to be optimistic about in the coming months. He said my blood work looks "just like you're a normal person" which is always good to hear. After a long and difficult hospitalization, steady and boring is pretty darn fantastic. An anti-rejection med I started a couple months ago (sirolimus) has caused some changes in blood work levels, but it’s not concerning now. I feel better than when I took a medication called tacrolimus, and I very rarely get sick to my stomach in the morning anymore. 

People ask me if I feel different. I do, but not in ways I expected. There was one thing that was a nearly instant improvement—my feet weren’t freezing anymore. No longer do I buy disposable 8-hour toe warmers in bulk or stand in a tub of hot water at 2 a.m. because my feet are so cold they hurt. 

I was cleared to go back to work this fall, but not to work directly with students and groups of adults because of the virus. I’m thankful the district is supportive and I have been able to teach students whose families chose distance learning in grades three and four from home. Having never taught third or fourth, it often feels overwhelming. I would be lost without my colleagues at Pioneer. It has been fun to meet daily with my classes and after a year away, it satisfies. I don’t think these kids could possibly know how much they mean to me. Last year I just accepted I couldn’t be at school. This year it’s a lot harder to be missing out. And, well, I was looking forward to returning to my actual job. 

On Friday, a couple friends organized a drive by at my house after school. The line of cars (many even decorated) honked, people shouted cheers, and I’m sure it startled my quiet neighborhood. It was fun to stand at the end of the driveway and see everyone in person! On Sunday we stopped for a driveway chat with Joan and Karen Beckman—my friends since preschool—and their families in Roseville. People all around us in our communities are working so hard these days, it’s fun to pause and celebrate.  

Like some of you, my everyday life feels rather small. I mostly see my mom, people on FaceTime, people who draw my blood, and my students. This summer I was told I could widen my circle a little beyond my parents and brother Peter, so we spent many good times at the cabin with Nancy, Karl, and Henry -- who stayed out in a camper. It was a typical summer in many ways. I only felt like I was missing out when it was really hot and I couldn't go in the lake (first year + bacteria precaution). But now that school’s in session, we have to distance again. 

My mom and I stay home to protect our health, but I also want to respect the gift my donor gave me. I worry about those who are also high risk but may not live in a safe place or have the ability to stay home. Three of my meds are  immunosuppressives so the risk of getting sick is high. The severity of Covid-19 for me may require hospitalization given my recent history. I didn’t just get a heart transplant, I nearly needed new lungs and kidneys. But I got it to live, not just kick around my house. Some days I struggle with that. A year is a long time to be apart when it had been filled with such anticipation.  Uff da. This is update has gotten long and is turning a little dark for such a happy day. I am still filled with anticipation of days to come and places to see and things to eat when we get there. Wanna go? Soon. 

Thanks for reading My Novel. 

Pictures

Dr. Edwards...not sure what the gesture is, but I played along.

Drive by on Friday from Pioneer.