When Kim Fredrickson was diagnosed with pulmonary fibrosis (PF) four and a half years ago, she was a self-described mess. She had a disease she had never heard of, and a doctor who didn’t explain it. So naturally, she turned to the internet.
She was not consoled.
“I was met with horrible news about prognosis, little information about treatment, and no help to handle this news emotionally,” she said in one of the weekly patient columns she writes for Pulmonary Fibrosis News. “I was devastated and in shock. I began my quest to figure out all I needed to know on my own. It was a scary and lonely road.”
Ultimately, that road led to Fredrickson’s recently released book for PF patients and their caregivers, “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks With You.” It’s a work aimed at helping those with PF navigate the confusion, fears, questions, and sorrow that accompany a PF diagnosis.
In a practical yet tender way, Fredrickson outlines actions to take when first diagnosed, how to cope through emotional turmoil and grief, how to give caregivers necessary information and support, tips for how to remain healthy for as long as possible, the supplemental oxygen experience, the stages of PF, the latest treatments, and the importance of addressing palliative care and other end-of-life issues. The book also hopes to help patients see God’s grace while they live to the fullest the life they have now.
There’s also a self-care checklist for patients and loved ones, including questions to ask physicians, internet resources, links to PF research, and comforting biblical scriptures. And, the book gives physicians who specialize in PF more insight from a patient’s perspective.
“Doctors are our lifeline, but what they may not know is what it’s like to be the patient — feeling alone, confused, devastated and in the dark as we face a life-limiting illness,” she said. “They need to know.”
Writing the book, she said in an a phone interview from her northern California home, helped her learn a lot about herself. Overall, she enjoyed the experience.
“I was surprised by that,” said Fredrickson, who has written two other books, “The Power of Positive Self -Talk” and “Give Your Kids a Break: Parenting with Compassion for You and Your Children.” “Honestly, every time I’d be writing about a topic, I was thinking about how I knew nothing and had to learn on my own. I felt like it was going to really help people.”
Along with an older sister, Fredrickson was raised in Southern California. She got a degree in psychology from the University of California, Los Angeles, and a master’s in counseling psychology from the University of North Texas. She got married, became a marriage and family therapist, and along the way, had a girl and a boy.
Then, a breast cancer diagnosis came in 2013. It was a fast-growing malignancy, the kind that affects just 10 percent of patients. After nine months of grueling treatment — lumpectomy, chemotherapy, and radiation — Fredrickson was eager to move on. But shortly after treatment ended, she noticed she was having difficulty taking a full breath. After two months of tests, she was diagnosed with PF, a rare side effect of chemo and radiation.
Fredrickson was distraught. But amid that, she made a conscious decision to be kind to herself, to be a good friend. “I am committed to not turn on myself or abandon myself during these difficult times,” she said in a column last August.
It took courage. Early on, for instance, she would feel self-conscious about being in public with supplemental oxygen. “I was on the brink of tears all the time,” wrote Fredrickson, who has also taught graduate-level counseling at Western Seminary.
Courage, compassion, and faith are constant themes in conversation with Fredrickson, and in her writings. Even her popular blog is called “Self-Compassion Through the Seasons of Life.” While achingly frank about her struggles, Fredrickson retains an uplifting, positive outlook.
But she had never planned to write another book. In fact, she’d resisted.
A couple of years ago, she said, God had nudged her about a PF tome, but her heart wasn’t in it. Instead, she wrote “Give Your Kids a Break,” a book intended solely as a parenting guide for her adult children and, someday, grandchildren. While it had saddened her as she was writing to think she might not be around for them, it occurred to her that others might benefit from the book, too. So, she published it.
But the idea of a PF book wouldn’t leave her alone. Still, she wasn’t open. For one thing, her disease is energy-sapping, and she would soon undergo extensive testing for a possible lung transplant.
After testing was done in May, she was told that by January — when she’ll be five years cancer-free — she would be placed on the transplant list. Her plan was to enjoy summer, fall, and the holidays before awaiting a donor call that may or may not come.
Fredrickson began to pray about what to do with her time until then. The answer she got was to ask others whether a PF book was needed. Within 24 hours of posing the question to three PF Facebook groups, she’d gotten more than 100 replies, all affirmative.
Finally, she told her husband, Dave, she was considering the project. He couldn’t understand her hesitation. “He said, ‘How many PF patients do you know who are licensed counselors who write about self-compassion and faith and have a weekly PF column read around the world?’ I said, ‘Oh.’ “
Two years later the book is out, and it’s one she wishes she had had the past four and a half years. Mostly she’s just happy to give back to the PF community. “There’s hardly anything available out there other than a few memoirs and scientific reports,” she said. “Mine is very factual about all aspects of being diagnosed, including the emotional ones.”
After 30-plus years, it had been a blow to have to drop her beloved counseling practice. While Fredrickson’s still adjusting, she isn’t wallowing. With a greater urgency these days, she keeps pretty busy. When she’s not writing, or making PF self-care videos, or on Facebook, she likes to read mystery novels and watch TV with her husband of 40 years, a retired pastor and seminary professor.
Now in the third of four PF stages and in stable condition, Fredrickson exercises, is active with friends, still drives, and goes out about three times a week.
“This is such a hard diagnosis, a very difficult path,” she said. “It was so grievous to have to retire, but I think my influence now is greater than it used to be. I just feel like God is good, and He is using this tragedy for good.”