This heartwarming story explores a family's journey as they navigate the challenges of pulmonary fibrosis, focusing on the complex emotional and physical impact on both the patient and his loved ones.
Several years ago, my dad was diagnosed with pulmonary fibrosis . The news was a shock. At 84 years old, Daddy had been dedicated to his physical health for decades. He played tennis twice a week, ate my mother’s low-fat meals, and spent lots of time outdoors on their organic vegetable farm. But the diagnosis did explain the symptoms he’d been experiencing. He got out of breath more quickly. He had a cough that wouldn’t go away.
And he’d lost so much weight, none of his old clothes fit — likely, the doctors said, because taking in less oxygen limited his exertion, thus lessening his appetite.Pulmonary fibrosis is considered a progressive, terminal disease; there is no cure for the irreversible scarring of the lungs that occurs. But my dad told me not to dwell on that — and not, under any circumstances, to google it. All that mattered, he said, was that it wasn’t cancer.He approached his diagnosis with his trademark jovial attitude, and I didn’t doubt the sincerity of his optimism, but I had a hard time feeling it myself. The pandemic had been raging for two years, and I couldn’t help but think my dad was one COVID infection away from life-threatening complications. I also found his new physical limitations hard to watch — the way he stopped to catch his breath, panting, after walking down the stairs; the rope from his tool shed now threaded through his belt loops to hold up his pants.To slow the progression of the disease, the doctors issued a list of suggested life modifications, and my dad hated all of them. Stop mowing the hay fields? Stop heating the house with the wood stove? These activities had likely contributed to his lung scarring, doctors said, but they were also some of my dad’s greatest joys. At first, he rebelled. He bought an air purifier to offset the wood stove’s impacts. He took to riding the tractor with a mask in his pocket, which he could pull out if anyone asked (none of us ever saw him wearing it).Eventually, my mom used a study linking wood stove use to lung cancer in women to persuade my dad to give up this one earthly pleasure for her sake. After that, he proved slightly more open to change.When his doctor mentioned that alcohol often worsened a secondary medical condition he was dealing with, Daddy surprised everyone by quitting immediately. The bottle of bourbon I’d already chosen for his birthday sat on my shelf untouched. My dad’s lifestyle choices were trending in the right direction, but there was still one big problem: his weight. Daddy had once been 6 feet tall and 155 pounds. Now at 5 foot 8 and just 123 pounds, he weighed less than anyone else in the family. At lunch, he ate peanut butter smeared on a single slice of bread and claimed to be full. Mom pressed him to take second helpings at dinner, but she had increasing difficulty finding food he liked.For the last four decades, my mother had sold organic fruits and vegetables at a local farmer’s market and assembled them into fresh meals for her family. She taught my brother and me to eschew fast food, reject sodas and always opt for low-fat milk and ice cream. When we played away soccer games in high school, our parents came to watch but refused to eat at the Arby’s or KFC or Golden Corral that everyone else headed to after the game.If Mom was our health food leader, Daddy was her willing right-hand man. But along with the other changes his body had undergone, his taste buds also seemed to weaken around the time of his diagnosis. He no longer enjoyed salads and rice and beans the way he used to. He cared more about color and texture now, Mom noted irritably. He refused leftovers because, once in their Tupperware containers, they no longer seemed visually appealing. With her own health issues to worry about — including high cholesterol and a predisposition for diabetes — Mom kept cooking the same plant-based meals she always had, and continued trying to convince Daddy to eat larger portions of them. But he remained stubborn, and the risk his low weight presented felt increasingly dire.I was torn over this food dilemma. On one hand, my dad was far too skinny, and everyone agreed this was now the most urgent medical issue to address. On the other hand, was it my mom’s responsibility to fix it? I started cooking beef stews and chicken casseroles on the weekend and driving them down to my parents’ farm. This way, my mom could keep eating her vegetables, and my dad could load up on fat and protein. However, this fix was unsustainable — as a working mom of a toddler, my schedule was far from predictable. Any bump in the road meant it could be several weeks before I had time to take my dad more meals.The solution came so quietly and unexpectedly that, at first, we missed it. One day at lunchtime, my dad was driving home from playing tennis with some friends and felt an unusual sensation — hunger. A McDonald’s just north of our town had opened up several years before, but no one in our family had ever stopped there
Pulmonary Fibrosis Terminal Illness Family Support Lifestyle Changes Diet Modifications
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