My patient, 15 year old Alex had been waiting for his second liver transplant surgery for 14 months. Away from their home, family and routines, Alex and his single mother Michelle patiently waited at the Ronald McDonald house in Pittsburg for 7 months before the special day came. Six months later and post transplant they were able to make their journey home to St. Augustine.
Happily transplant ever after? Yes and no.
Seven months post transplant and Alex is much healthier than he was prior to his surgery. Michelle has been able to return to work and Alex continues his home schooling. But how do you return to a “normal life” when life was not the typical normal to begin with. As a counsel to this family, I observe the emotional struggles associated with life post transplant. Alex and his mother still keep constant vigil on his health. He is Immune deficient as anti-rejection drugs, steroids and chemo in 2011 wiped out half his immune system that never came back. Even a trip to the dentist to get a tooth pulled resulted in an admission to the hospital and several weeks of recovery.
At 17 years old he is 4’1” from steroid use and now takes growth hormones that he injects daily
Work, activities and social life continue to be the mercy of Alex’s health. While the imminent health crisis of liver failure is over, medical issues are here to stay…the stress continues to build a “new normal” outside of a long term acute medical crisis into a paradigm of chronic medical peaks and valleys. Friends and family are essential not only during the transplant process but the aftermath as well. As Alex and Michelle’s life revolved so long around his medical conditions life went on around them.
Michelle is trying to integrate “normal” life activities into her world such as meeting up with friends and dating. She also pushes Alex to step outside of the bubble they lived in for so long and seek out activities he can engage in. It’s not easy for Alex. While he was struggling to survive, the few friends he kept over the years have moved into dating and driving. He strives to find commonalities with his peers which can serve as a foundation to maintain his friendships.
How can others support those enduring the experience of post transplant life? Michelle’s words say it best: “Often a person with a transplant has life long challenges, that are not solved by the surgery. Trying to be compassionate and inclusive of that person, and plan activities that they can do, is very helpful, as is just shooting a quick text. ASK what can be done. Don’t assume that you can’t make a difference to someone’s life, because you can by showing up again and again. That person and their caregivers’s lives are changed forever. Show empathy and show up!”.