30 Days of PF: My Message Is Hope

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Photo courtesy of Holly Patient

Day 25 of 30

This is Holly Patient’s story:

I don’t know exactly when my IPF journey began. Was it on that hike, when I felt dizzy and out of breath? Was it that time when I fell skiing and literally could not get up? I had skied all my life and did it fairly effortlessly. When did I begin making excuses to friends and start skipping hikes and after-work dog walks?

It was only when a persistent cough led to a check-up that I finally learned I had a lung problem. Next came a pulmonology referral, then the UCSF interstitial lung disease clinic. My IPF diagnosis came more than a year later, with worsening pulmonary function test and CT results.

I know the fear, fatigue, treatments and their side effects, never-ending appointments, unceasing anxiety. We hear the word “stress” all the time, often uttered by healthy folks with overly busy lives. Living with a terminal illness, with little hope of improvement, and planning for a short and dismal future — that is stress.

My disease progressed rapidly. June 2018: IPF diagnosis. July 4: supplemental oxygen. August: pre-lung transplant orientation. September: leave my job, on disability. November: a bittersweet family reunion in Hawaii. December: worse and worse, ordered to sea level for Christmas. Dec. 26: pulmonology appointment in a wheelchair, back in Truckee, California. Consultation with UCSF and that night, I am on Careflight to the City by the Bay.

On March 15, 2019, my IPF journey ended, and my double lung transplant journey began.

Post-transplant life has its challenges and restrictions. Surveillance, tests, lab work, and follow-ups remain constant. I am alive! I treasure every moment with my loved ones, every glorious sunrise, every ride on my new e-bike, with the wind in my face and the river running beside me.

To you, my fellow IPF warriors, I want to say: “Have hope!” The transplant was the answer for me, and maybe it will be for you, too. It’s scary, even daunting, to contemplate. Remember, you are never alone in your transplant journey, and I hope that some of you reading this will join me. You can do it.

Note: Holly Patient’s daughter, Christie, writes the “Courage to Care” column for Pulmonary Fibrosis News.

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.

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