I saw the book title, “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “ by Gail Rae on Twitter (do we follow each other there? — I’m @WorkWithIllness) and thought her story might spark the creative juices in some readers.
ROSALIND: What made you decide to write on this topic?
GAIL: I decided to write a book on early stage CKD after experiencing the fear and confusion of being diagnosed with Chronic Kidney Disease Stage 3. I honestly thought I was being given a death sentence and, while I’m sure my nephrologist was giving me the information I needed, I was too muddled to hear it. I researched and researched by myself, finding a bit of information here and another there. I kept pleading with my doctor to recommend a book for me, but he couldn’t. Apparently, there weren’t any like this: easy to understand, supportive of the patient without scaring him or her, and including the comprehensive answers to the questions a newly diagnosed CKD patient would ask. He was the one who suggested I write this book.
ROSALIND: How did you choose this focus?
GAIL: I narrowed the book to adult early stage CKD via my exploration of the disease online. In my research, I realized I wasn’t interested in dialysis, but rather staving it off as long as possible since I found the thought of it repulsive. I know I’ll do it if I have to, but I don’t want to have to for a long, long time. That brought me to discussing only early stage CKD. I also found myself weeping repeatedly when I uncovered information about CKD in children. My own did not have the disease and it was heartbreaking to even read about children with CKD. So, I discuss neither end stage renal disease nor children with CKD.
ROSALIND: What do you hope to achieve?
GAIL: I wrote this book because I want every CKD patient to realize he or she has quite a bit of control over the disease. You can’t cure it, but you can keep it from progressing rapidly. When you understand your labs, you can improve the numbers. Being a partner to your nephrologist rather than expecting or allowing your doctor to treat your illness without your input will give you more control. Learning what your renal nutritionist explains to you will improve your food choices. Exercising is something you can learn to enjoy. The biggie for me here is realizing that letting other people know about your illness can help you adjust, especially since every other medical issue will be affected by your CKD for the rest of your life. I’ve included all sorts of resources and a glossary in the book. Simply put: I didn’t want anyone else to experience the silent, desperate fear I did when I was first diagnosed.
ROSALIND: What advice would you give to someone living with chronic illness who wants to write a book?
GAIL: If you have a chronic disease and want to write a book about it, do! Think about how much it may help others with your chronic disease. It can be cathartic,too. If you research your illness, you’ll learn so much you hadn’t heard in your doctor’s office and you can determine the difference between the myths and the realities of your chronic illness.
I would keep in mind that whatever your chronic illness is, it’s such a niche that you may end up self publishing. That doesn’t mean you can’t do it if money is a problem, only that you may have to take a seed money loan and pay it back from your sales. By the way, your sales depend upon how willing you are to promote your book. I find myself more and more passionate about promoting my book. I want the information shared.
ROSALIND: Thank you, Gail. I wish you much success!
To learn more, the book’s website , ” What Is It And How Did I Get It? Early Stage Chronic Kidney Disease” , Gail’s website and Gail’s blog .