My husband, Jonny, and I return to the University of Nevada, Reno, every year for our alumni rugby game. The first weekend of October is among the best of the year. Our parents come to watch, and for one magical day we have our closest friends and family in one place enjoying the fall sunshine.
This year’s alumni weekend was especially joyous, as I returned to the game after a long recovery from an injury. But while celebrating my victory, I also was comparing each moment to a year ago.
This time last year, my mom, Holly, had just been diagnosed with idiopathic pulmonary fibrosis. I didn’t know how those words would shape our lives in the coming year. She was on medications to slow the progression of the disease and had recently started using supplemental oxygen.
Today, her chart no longer reads “advanced stage interstitial lung disease.” Instead, it says, “status — post double-lung transplant.” Now, she doesn’t take medications to slow the progression of a terminal disease, but rather to maintain the health of her new lungs and prevent rejection. Thanks to her new lungs, her oxygen saturation and other vitals are normal. There isn’t a cannula or oxygen bottle in sight.
Last year, my mom was exhausted from the disease. Sitting in the sun to watch the game made her ill. She curled up in the shade of the bleachers and napped, portable oxygen compressor humming away. She and I both tried to deflect when people asked if she was OK. Neither of us wanted to admit how bad things were, and that they would only worsen.
This year, she watched the game from the stands and enjoyed the sunshine (with plenty of UV protection). She was not fatigued, breathless, or nauseated. She chatted with our friends and family and beamed when they told her how healthy she looked. I didn’t have to pretend not to see concerned stares. I didn’t try to turn conversations to any other subject to protect myself from a meltdown.
After the game last year, my mom and I tried to walk down a small hill to sit on a dock at the lake. I helped her walk slowly so that her oxygen saturation didn’t drop in the 30 feet between the car and the shore. Something that never would have fazed her was almost impossible. It was evidence of how much the disease had taken, and we didn’t know how much worse it would get. I tried to tell her it would be OK, that we’d take it slow. I was scared, too.
This year, my mom took me on a walk around the local pond. We cruised for a mile nonstop, admiring the fall colors and birds preparing to head south. Less than six months after her lung transplant, she had worked her way up from a 30-yard walk down the hospital corridor to a six-mile hike. She has also participated in a Donate Life 5K and gone kayaking.
Every time I hear about one of her milestones, I think about where we were at the beginning of the year. I remember her walking 10 feet in the ICU and being ready to quit. I remember the hardest moments of my mom’s hospitalization and am in awe of how far she’s come. It doesn’t seem possible that her health could have changed so dramatically in that short period. But it has, thanks to new lungs.
I don’t think much about the time before her hospitalization, the “normal days” of chronic illness with their challenges and anxieties. This weekend was an opportunity to remember the days before the emergency trip to the University of California, San Francisco. It was a chance to compare one day — a day with the same schedule, same weather, same people, but a year apart — and see how life-changing my mom’s transplant has been for her. It was beautiful.
There are new health risks related to immunosuppression, but it’s nice to forget them for a moment and realize how lucky we are that my mom received the gift of new lungs. Healthy lungs mean so much more than erasing the words “idiopathic pulmonary fibrosis” from my mom’s chart. Every moment is no longer a reminder of mortality. Instead, it’s a chance to celebrate being alive and to be grateful for health and being together.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.