Hello PF friends! I would so appreciate your input regarding a heartfelt project I’m considering. For about a year I’ve been pondering finishing a book to help patients like me deal with being diagnosed with a terminal illness.
I started this book a year ago but set it aside as I worked to complete some projects for my family. I’m considering picking it back up again and would love your input. I started to write this book after experiencing how awful it was to figure out how to deal with this disease pretty much by myself.
When I was diagnosed four years ago, there was so much mixed information on the internet that was either incorrect or shared in terrifying ways. You know what I mean. I also noticed there was very little to help patients deal with the emotional turmoil of being diagnosed suddenly with a terminal illness. The effort of trying to deal with the emotions while figuring out what treatments to pursue and how to use supplemental oxygen was overwhelming.
I’ve learned a lot from my own experiences as well as from fellow patients like you. Doctors know a lot, and we’d be lost without them. What they don’t understand is what it’s like to be the patient, and to feel alone, confused, devastated, and in the dark as we face a terminal illness.
Writing a book is a lot of work, and I’d like to see if there is a need for this book. I’m hoping it will be helpful to have practical information from a patient’s perspective all in one place. I put my foot in the water a few days ago and asked three of the PF Facebook groups I belong to if they felt there is a need for a book like this. I got a lot of very positive responses, and I would value your input too.
Several areas of need
The responses I received seemed to coalesce around several areas of need:
- Working through the many emotions and grief that come with this diagnosis.
- What we wish we knew when first diagnosed — not just treatment information, but all the ways to be proactive to stay as healthy as possible for as long as possible.
- How to live the best life possible now.
- Help for caregivers — information they need to help us, how to take care of themselves and handle their varied emotions as well as get the support they need.
- Understanding and obtaining palliative care, including addressing end-of-life issues.
- Everything a patient needs to know about oxygen.
- Treatment options.
A book just for PF patients?
As I read through the responses, I noticed that the needs expressed were specifically about dealing with pulmonary fibrosis, as opposed to dealing with a terminal illness. This is causing me to rethink narrowing the book for pulmonary fibrosis specifically. I truly would appreciate your input. I don’t want to put effort into a book if it doesn’t meet a deep need.
I’d love to hear from you
Would a book like this be helpful to you? If so, what would you want to be included in it? Are there other books about PF written by patients out there? Do you think a book dedicated to PF patients rather than to those with a terminal illness is a good idea?
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