This blog entry comes from one of our Patient Co-Investigator’s, Brian Bankes’, step-daughter, Albree Boone, written from her perspective on living with a loved one with kidney disease.
When a loved one is diagnosed with kidney disease, there are a lot of situations, emotions and scenarios that others may not understand. My step father, Brian, had already had his first kidney transplant when I first met him when I was 11. Over the last 23 years, our family has been through a second transplant, numerous types of dialysis and countless surgeries.
After the long hospital stays, the late night phone calls and plentiful doctor appointments, it is easy for family members to become desensitized to the severity of kidney disease. We become numb to sitting in waiting rooms waiting for the doctor to come tell us the results of a surgery. We don’t immediately leave work when my mother calls to say they are on their way to the emergency room because Brian’s dialysis port is clotted. We don’t even blink an eye when it’s time for another test or another meeting with a nephrologist.
It’s certainly not a lack of love or compassion for someone who has been a wonderful father even though he didn’t have to love us like we are his own. It’s the constant barrage of surgeries, exams and procedures. We weigh the severity of each situation. Other families drop everything for a medical procedure on a loved one. They worry and obsess over an upcoming surgery. For us, it’s a lifestyle. We gauge the procedure, exam or surgery on a case by case basis and react accordingly.
I often feel that others without a family member with a chronic disease see us as callus when we don’t drop everything at the first phone call. Unfortunately, this is a way of life for us. Even my step-father, Brian, has become desensitized to his own procedures and urges us to continue our daily routines. We have come up with our own coping styles and support systems. Our family has adapted our thoughts and processes in order for kidney disease to not run our lives. We will remain optimistic and continue the battle with a disease that will forever be part of our family.