My dad has only one kidney!

I was barely in my second grade when I saw my dad hurried to the hospital. I mark that day as what life-course theorists would term as a Turning Point. My mom was suddenly absent. An everyday familiar face of my brother, eight years older than me and appearing for his 10th board exam in a couple of weeks, was absent too. I found myself surrounded by family, neighbors, and acquaintances, who I barely knew, visiting us every evening and discussing what next? For an eight-year-old, not having parents around, skipping school, and not having to study in the evenings was a weird but happy feeling. I did ask my mom and my grand-mom several times what was going on? Well, I guess nobody knew enough to explain me adequately.

Unbeknownst to all of us, my dad had Polycystic Kidney Disease (PKD). WAIT! WHAT???? WHAT IS THAT?

Polycystic Kidney Disease is an incurable chronic, genetic disease, causing uncontrolled growth of fluid-filled cysts in the kidneys. As the cysts accumulate more fluid, they get bigger and bigger, destroying healthy tissue, which leads to high blood pressure, other complications, and often kidney failure. PKD is one of the most common genetic disorders and affects about 500,000 people in the United States

With my dad (1983/84) in Bhutan: Life was simple

I have a rather faint memory of seeing my dad writhing with severe abdominal pain. All I was told that there was something wrong with my dad's 'kidney' (honestly had no idea what a kidney was or what its function was)

A few nights later, my mom hugged me tightly. I still remember the following day (sometime around March 1988). It was bright, crisp, and somewhat chilly. I got up to see she is no longer around. Neither was my brother around. His board exam had started on the very same day. My grand-mom informed me that my parents had left for Kolkata, a big metropolitan city, for my dad's treatment (As a context. I grew up in a then small town in India called Durgapur. Back in the '80s, there was just one hospital that could not diagnose or treat his condition). I did not go to school that day. I was neither sad nor happy. But something in me changed that day forever. I don't know what, but suddenly, I felt an immense sense of responsibility, a sense of loss, and loneliness. I am glad I was just eight years old, and I don't remember much anymore.

After about a month (or so), my brother and I traveled to Kolkata. I was excited at the very thought of seeing my parents again. At the hospital, I ran to the room with a big smile on my face. Unfortunately, my smile vanished the moment I saw my dad unconscious, with tubes hanging and surrounded by many people (or so I remember- it's a haze now). I did not hug my mom but kept staring at her and my dad, trying to fathom the situation. I don't remember much of where my brother was, but I was shuffling between relatives for a month or so before my mom and dad returned home. And yes, at a very young age, I got my first introduction to Polycystic Kidney Disease. Over the next month, I learned a lot about human anatomy. I got to know that humans have two kidneys, but...

My dad has only one kidney!

Wow! That was something cool to talk about to my friends!

Fast forward to 1997. I saw my dad suffer from extreme hypertension through the many years, as his other polycystic kidney had started malfunctioning too. There were episodes of severe hypertension, followed by frequent hospitalization. Two days before my 10th board exam (something about board exam and my dad!), my dad, who by then was frequenting hospitals and overnight stays, declared that 'The doctor had told him that he had eight more years to live.' For a second, I wondered, why? Why is he even telling me that? Is he not concerned about my exams? So I just told myself, "maybe he is stressed, now focus and get back to work." But the thought kept lingering, and years went by.

Fast forward to 2013, and my dad's condition had started worsening. Doctors declared he needed to get to dialysis and a kidney transplant. Wowww! He was almost seventy, and the time was ticking fast. My mom, who was brave and strong, stood through 'sickness and in health.' It was one hellish year going through dialysis and finding a donor. My brother, who eventually became a doctor, was the most significant pillar of support. It wouldn't have been possible without him.

In 2014 my father went through a kidney transplant operation. We stood by as a family and supported all the complications that go along with it. But, organ transplant is not the end of the story.

You have a pre-transplant life- where you are waiting for the magic bullet, and then you have the post-transplant life, holding on to your dear transplanted organ so that it keeps supporting you.

It's a lifetime of surviving on immunosuppressants. With COVID and the increased risk of mortality among immunocompromised individuals, the fear of something going wrong remains real. In short, of my 40 years of being alive, I have spent 32 years knowing that my dad has a condition that needs special care. I continue to thank God for every day he is alive and for being part of some of my most significant life milestones.

Mom and dad sharing a moment of joy with my newborn son, Seattle, 2019

Although nothing compares to a person living with PKD, the life-long chronic disease impacts the whole family. Life-course theorists use the term Linked lives to explain how lives are lived and linked interdependently. The concept is frequently used to study a caregivers life trajectory. In that linked life, my mom continues to be the primary caregiver to my father (However, now that they both suffer from some health condition or the other, I call it the double helix caregiving). My brother and I function as satellite caregivers.

Of course, if I were to chart my parent's care network, it extends way beyond the three of us and warrants a different article on informal family care networks, to whom I am eternally grateful.

I can visibly see how the long-term stress of care has impacted my mom's physical and mental health. Research on stress and adaptation in caregivers to chronic-kidney disease (CKD) is emerging, although interventions to address their stress are woefully inadequate. There has been an increasing trend to shift care to the home, with evolving digital tools that allow for remote monitoring of patients with chronic diseases in the home environments. Unfortunately, the current medical system rarely addresses the needs of caregivers. It is sad that majority of the focus are on the patient, provider, and the payer. There is practically no discussion on caregivers. What the current health system (or environment) fails to recognize is that when at home, a patient is not a patient, but a father, a mother, a brother, a sister, or a spouse- someone you love dearly. And providing and seeing the person suffer round the clock is physically and mentally tiring. As new systems of care delivery evolve, providers and payers need to bake in services that address the needs of a caregiver and care-recipient dyads/ triads, to ensure quality outcomes for all.

This is all to say that PKD is a life-long condition and for the family it's a life-long care journey. Hence,

today on the occasion of International PKD Awareness Day 2021, I write this as an ode to all caregivers big and small, whose lives have forever changed caring for someone with PKD.?

The author is a research scientist with more than 10 years of doing health care research. Any correspondence may be marked to [email protected]