Why It Was Difficult to Transition From Patient to Caregiver

Anjimica (the name my living donor and I gave my new kidney) is 2 years old! Happy Kidneyversary to me! Whew, time flies when you’re having… fun?

The first year was rough medically, so when I got the “all good” at my one-year post-transplant appointment, I set sights on what I wanted to tackle in 2020. I had so many plans brewing. After all, I had spent five years on dialysis so I had a lot of time to dream! I was ready to tackle full-time work again, travel internationally, have a drink, catch up with friends and all the celebrations I’ve missed, volunteer monthly at the Ronald McDonald House, create and bake new recipes, visit dialysis centers and chat with patients, look and plan for my own home, start inquiring about how to foster to adopt two children… the list goes on.

However, someone, somewhere heard my plans, started laughing and said, not this year girlfriend.

Enter 2020, aptly nicknamed the dumpster fire of a year. Transplant wise, besides having totally shitty labs August through October (stress?), Anjimica is doing well! I still hate peeing on command or in a cup, and trying to drink 64 ounces of water some days is a struggle. Finding and paying for my immunosuppressants can be a real challenge, I beg my doctor to rid me of one medication every time we talk because I hate what it does to me, and don’t get me started on insurance issues. Some of the side effects of the other meds are terrible as well, and I am constantly in fear every month waiting for my bloodwork to come back. Nonetheless, I recognize that these are all nuances, nothing too serious this year, thank goodness.

As “luck” would have it, when I’m doing well and ready to finally get to exploring and enjoying my late 30s, a global health pandemic hits on top of raging social injustice across the nation, an unprecedented presidential election season, my grandfather’s passing, never leaving my house (OK, that is me being a bit dramatic) and watching my mom go through her own fair share of rough patches medically.

My mom’s health journey is hers to tell, so without going into too much detail, I will just say she’s had hurdles to jump over the past few years. When this happened, since I live with my mom, I was placed into a caregiver role by default this year, specifically the second half. This is not to say I didn’t have help, we have a close-knit family, my aunts and sisters have lent their hands more often than I have given them credit for. For the first five months of 2020, my one sister and my new nephew lived here and my other sister lives a mile down the road. None of that seemed to matter to me, and I felt like it was an uphill battle most days. I admit I had a difficult time seeing the situation from my family’s point of view, and they had a hard time understanding my perspective.

I hate admitting this, but caregiver wasn’t a role I wanted or accepted with grace. I have spent a lot of my time from birth to adulthood being the patient. From being born a premie to my first surgery at 2, followed by what felt like a million ear, nose and throat issues (that are still prevalent today), to an adult diabetes diagnosis as a child to kidney disease as a young adult, to transplantation to most recently a foot surgery this past June — and this isn’t even the complete list! Being a caregiver was a new and foreign role to me. At 36, now 37, being given the all clear, I had never felt more ready to go go go. As I mentioned earlier though, that wasn’t the plan the universe had for me and I was bitter.

Real talk: after five years on dialysis, and a hellish first year medically post-transplant, I was eager to start my life, not put it on the back burner yet again. I should have met my mom with love, support, kindness and especially gratitude for all of the times she did it for me without blinking an eye. Instead, I was resentful, jealous, depressed, lonely, scared and downright mean some days. My mom and I constantly butt heads on a normal basis, add in her being the patient on a lot of different medications, and I quickly got a dose of my own medicine as our roles were now reversed. The apple doesn’t fall far from the tree, eh? As my family kept thanking me for being here and told me I was lucky to be here, and my best friend kept telling me I was doing a good job, I didn’t believe any of it. I kept thinking I was in my own version of hell. Perspective is very subjective and it has been quite the task for me to find the silver lining these past few months. To put it frankly, I have been a whiny, selfish, jerk to most but especially towards my mom.

As much as I have been a hot mess in 2020 and my words and actions have been hurtful at times, I want to acknowledge the positives, too. I have spent a lot of time with my goddaughter and nephews, I invented games over FaceTime, read books, watched movies. I read a few great books for myself; if you haven’t read “Untamed” by Glennon Doyle, do it! I binged all of “Grey’s Anatomy” finally. I took a month long course on how to be a better writer. I attended my first virtual concert, because music is my therapy when I can’t get to actual therapy. I redefined my support circle, and it’s amazing to see who reaches out when all there is is time to reach out. I started an online book club. I rediscovered online dating (it was an epic fail this time around). I updated my resume and sent out over 80 applications. I researched, volunteered and donated to my first presidential campaign. Most importantly, I was able to be there for my mom when she needed someone the most.

This past year has undoubtedly been hard for so many! It has been unpredictable, exhausting, messy, daunting, overwhelming, lonely and depressing. There have been many nights I’ve cried myself to sleep and wanted to call it quits! On the flip side, this year has also been reflective, brave, imaginative, humbling, exploratory, beautiful, eye opening, healing and strengthening.

Anjimica may not have had the year it originally envisioned and wanted, but some days it seemed as if it was just what my new kidney needed. And there’s always hope that 2021 will bring better days!