I’m excited to share that my book, “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You,” was released a few days ago. It was a labor of love and I’m so glad I wrote it.
Why I wrote it
I was a mess when I was diagnosed with pulmonary fibrosis (PF) four and a half years ago. I didn’t get much information from my doctor and started searching on the internet. If you’ve been through this process, you know what I found. I was met with horrible news about prognosis, little information about treatment, and no help in emotionally handling the 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.
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Over the years, I’ve learned a lot about living with pulmonary fibrosis. I wrote my book in hopes of making this journey a little easier for patients and their loved ones. I also hope it will sensitize those in the medical community to what it’s like to live with PF and how they can help us more effectively. Doctors are our lifeline, and we’d be lost without them. 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. This is the book I wished I’d had these last few years. Below I share why I wrote it.
I almost didn’t write it
It was a huge project to consider. I’ve written two other books, so I knew what it entailed. I vacillated for six months, then only said yes because of a change in circumstances and a comment by my husband.
Six months ago, I was told by my lung transplant team that they would most likely add me to the transplant list in nine months. Although my lungs were serious enough to be listed then, I had to wait an additional nine months to get to my five-year cancer-free date before being accepted on the list. My husband asked me if that was hard to hear, and I said no, because I was in no hurry to go down that road. I also wanted to ponder how to use the waiting time to the fullest.
I’d been considering writing a book like this for a while but didn’t want to start it with all the uncertainty of being on “the list.” When this time opened up, I prayed about it and asked my husband what he thought. He paused and said, “How many PF patients do you know who are a counselor, author, write an international column about PF, and write about self-compassion?” I was silent for a moment, and then said, “Oh.” Having this window of time open up, God’s nudging, my hubby’s comment, and lots of encouragement from other patients spurred me on.
The following video will give you an idea of what’s in the book.
You don’t have to walk this path alone
I know the news of your diagnosis turned your world upside down. Let’s walk this path together. I will be your guide, resource, and friend, and I’ll help you become a good friend to yourself along the way. I will be real with you and talk about how to live the life you have left to the fullest, plus cover hard topics we all find difficult to discuss. You’ll find answers to your questions, which I hope will be deeply meaningful because they come from someone in the trenches with you, someone who truly understands what you’re going through. My hope is that your fears will be reduced and you will have a greater peace of mind knowing you’re not alone.
This is such a hard road that we’ve never been through before. The loved ones in our lives have never walked this road before, either, so I hope my book will be an encouragement to them as well. You don’t have to do this alone.
I wrote about what a challenge it was to write this book in a previous column. I also asked for help in letting PF patients, their loved ones, and medical professionals across the globe know about this book. I’d love for you to join my book launch team. To find out how, check my prior column for all the details.
I’d love to hear from you!
Where have you found information about PF? What kind of information and encouragement do you need the most? Could you help me spread the news about “Pulmonary Fibrosis Journey”?
Please leave a comment below and share with those who could benefit via email or on social media.
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.