It was about two months before my wedding. I was lying awake in bed. Another restless night. I tried to distract myself with thoughts of our upcoming nuptials: images of myself walking down the aisle toward my fiancé, our idyllic honeymoon in Hawaii, the life ahead we had envisioned for ourselves, happily married, with children.
Suddenly, someone shuffled the sheet around my feet, and the friendly, familiar face of one of my favorite hospital residents peered behind my curtain, “Shari, we have a liver for you.”
Having been down this road two times before, I was hesitant to get too excited. But he assured me this time was “the one” and they were going to prep me in the next hour for the grueling transplant surgery.
The 22 days preceding this one had been unthinkably harrowing for me and those around me. What was meant to be the most joyous time of my life turned out to be the most traumatic: one day, I had been on an amazing career trajectory and planning for my wedding. The next, my family was told I needed an emergency liver transplant within a week or I would die. Quickly, my body shut down and I lost almost all physical and psychological functioning. The nurses bathed me while feeding and oxygen tubes helped sustain me.
The days were long, the nights longer, but I had an amazing team of surgeons, residents and nurses who kept positive and gave me hope. We later learned that I had a rare genetic disease called Wilsons Disease. And while my family quickly educated themselves about organ donation and transplantation (or more accurately: about the lack of organs and my grim chances of getting one), I grappled with the emotional reality that I wasn’t leaving the hospital unless the system matched me up with a suitable liver from someone who had died.
After recovering from the 12-hour transplant surgery, I was discharged and sent home in 17 days where my new life as a transplant recipient greeted me: doctors’ visits, frequent blood tests, and a cocktail of medicines that would keep me alive for the rest of my life. As planned, my husband and I got married, but while other brides think about getting in wedding dress shape, I focused on re-learning how to walk, and worried about whether people would be offended if I didn’t kiss them hello at the wedding, as I needed to steer clear of germs.
When my husband and I finally “mastered” the great responsibility of managing someone else’s liver, with doctors’ clearance, we tried for a baby. Having been through such a trauma already, we didn’t expect our marriage would be put through yet another test. Four years and three pregnancies later, our miracle baby, Alexis Nadia, was born six years to the week after my transplant.
Motherhood has been the most incredible journey of my life. We have been blessed with an amazing, exuberant, energetic, smart, sassy little girl. As all parents do, I want the best for my kid and want her life to be easy and carefree. I wasn’t able to breastfeed because of my immunosuppressants, and the looks I got from unknowing moms when I brought out the bottle were downright hurtful and judgmental.
I worry about Lexi endlessly. I know I’ve passed along one of my Wilsons genes to her, but thankfully the disease is something we can watch for and treat, if diagnosed early. When she was just four months old, I got just the tiniest sense of what my own donor’s family may have gone through. Lexi had developed a hemangioma on her head. It was the size of an apricot. We got three opinions before deciding surgery was our best course of action. As she was put under anesthesia and I held her vulnerable little body, I knew then, for the first time, what it was like to be completely, utterly responsible for someone you love so much…and what it was like to worry you may never see your daughter open her eyes again.
For now, Lexi knows that her mommy takes medicines every day and had a booboo on her liver. She looks at my scar, my badge of honor, and asks why I have holes in my abdomen in places she doesn’t. She’s really looking forward to the cake we will eat at my 10-year “liverversary” celebration.
We are so grateful that someone said the words “I want to be an organ donor” and gave me a second chance. I think a lot about the day that I’ll tell Lexi about the 18-year-old girl whose family who made the decision to donate her organs and save my life; the girl who essentially gave Lexi her own life too. In the meantime, I love my daughter with all of my being, treasure the time we are together, and hope that my husband and I are raising her to be as compassionate, giving, and loving as the teenager I’ll be indebted to always.
Maybe one day, I’ll get to meet my donor’s family. “I’d like to introduce you to my little girl Lexi,” I’ll tell them. “We named her after your daughter.”