On February 25th, 2022, my father was placed on oxygen a week after I had surgery for a torn Achilles. He was facing his first idiopathic pulmonary fibrosis (IPF) flare. I knew this day would come; it was only a matter of time. I’ve seen and cared for patients who have faced IPF, but it hit home that our lives would drastically change.
As I concluded the video visit with his pulmonologist, my tear-filled eyes turned to a phone notification from the New York Times: “How COVID Stole our Time and How We Can Get It Back.” Urban’s central thesis: Stop thinking about the countless time left. Rather think about the countable time we could have. Initially, this felt eerie — to count backward from our own and our loved ones’ mortality. I sat with this feeling as I calculated mortality rates post IPF flare. I juggled my own health needs post-surgery, quarterbacking as a physician-son, supporting my family, and staying engaged with the patients I cared for. I had to choose, and the article clarified: I have countable days with my dad, which now might be abbreviated.
Take a step back to see the path forward.
After an exhausting three of navigating pandemics — COVID and racial health inequities — in the Southside of Chicago, this life-altering moment made it clear: it was time to take a step back. Many were incredibly supportive; it still felt jarring. My patients helped ground my decision. One of my patients with complex needs wisely said, “You have to be a doctor to your dad now. He raised you. Nothing else matters.”
My dad immigrated from India in the late 1970s, worked two jobs, and switched careers to give us opportunities. With this opportunity, I became a doctor to help alleviate ailments faced by the vulnerable. My dad and our family were going through his biggest health ailment. His clinical need was a lung transplant, and what I had to offer was my love, knowledge, and time to help alleviate it. This was the path forward.
“If we imagine what we might regret down the road, it’s very much in our hands to do something about it now. This is the good news about being a human. The time we have left with family and friends is not a law of nature like the weeks we have left to live. It’s a function of priorities and decisions.”
- Tim Urban
I often used the phrase “If you were my dad” to explain treatment options. This highlights the deep care I strive for with patients. However, this time, it was my dad. Wearing the hat of both The physician and The son was central in the last six months. It has been easy to explain to my dad, Mom, sister, and other family members what IPF is, why we don’t have a cause and its progressive non-curable nature. I’ve managed expectations of diseases at the bedside with patients all the time. But the responsibility of this task was exponential. How do I grapple with the post-IPF flare data with my closest loved ones? How do I push my dad to keep his nutrition and physical strength up to improve his quality of life and strive for a lung transplant while knowing the potential toll of any path? Through trial and error, I learned to lean into my physician hat of pragmatism but with underlying steady optimism as his son. Without thoughtful expectation setting, we could lose time and opportunity. Without reasonable hope, our motivation to keep going would plummet. Figuring out this balancing act is something I’ll never forget.
I often reflect on my time with my patients in their health care needs. This devotion is crucial to the physician-patient relationship, so much so that it is often at the expense of your own needs and those close to you. At this time, how could I be that devoted physician for my dad? It became the most important job, and I have been committed to leaving no stone unturned in his care.
First, I used my network to double-check his care plan and exhaust options. That included my incredible residency program director, who connected me to a former pulmonologist attending and getting second opinions at top Lung transplant institutions. Second, I became a physician-son health coach. I attended doctor visits, led the MyChart communication, double-checked labs, and medication regimens, and coordinated and nudged his health care providers.
It was a privilege to draw on the education and opportunities made possible through my father’s labor to now care for his health condition. It is a privilege that I do not take for granted. It leads me to ask: How do I facilitate the coordination and medical expertise my dad has for others? It grounds me in my professional calling — improving care delivery for those left behind.
Through it all, being a son has been the backbone, whether it was playing Carrom, watching cricket, or encouraging him to let me shower him. At one moment near Father’s Day, my aunt proudly noted that I was our family’s Shravan — a reference to the Hindu mythological story of a son who carries his blind parents on his shoulders for pilgrimage. Whether one calls the transplant evaluation circuit a pilgrimage or not, it has felt like one. No matter the reference, I wanted to be there for it all — as his physician-son.
Staying present and positive
Often, I get a text from a close friend or colleague asking how I’m doing. At first, I would say, “To be honest, not great.” Most days still feel that way. But to “stay present and positive” has become my new mantra. I’ve found two helpful ways to live out those words.
Lean on your flock or “peeps” that come to your side. Self-explanatory, yet hard to practice. We have long leaned on our parents to make our lives possible; they care for their grandkids and fill our fridge with food. This mattered even more now. I also learned to welcome this opening in relationships, both the old (sister, wifey, best friends) and new (work family, my PT who was going through a recent loss, or my daughter’s school parent community). I wasn’t moving through this alone; we were moving through this together.
Focus on shared well-being. At first, I felt guilty when I spent time with friends or went to a Cubs game while my father struggled to breathe. Over time, I realized this was a marathon. Dad needed us all to be present and whole. We all needed to find some balance in a turbulent time. I still worry about this for my mom, my dad’s everyday go-to.
As we continue this journey as a family in what will likely be an even more challenging six months ahead, the last six months have provided lifelong lessons. Equipped with these learnings, a new exciting professional opportunity to build the type of care my father would be proud of, and with my flock of peeps by my side — I’ll continue to strive to be the best physician-son for my dad.
Amish H. Desai is an internal medicine physician.
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