Many of us are now embarking on our first chronic illness journey. We are navigating very choppy waters, and most of us have difficulty weathering the storm, and we need help. Even veterans, such as I, who have fought for their right to the best medical care possible, or to just find a doctor who believes them, find it a lonely and frustrating peregrination that can make medical conditions worse because of the stress involved. The Take-Charge Patient to the rescue!
My chronic illness journey began in Australia and followed me to the USA. After four heart attacks and continual bouts of what was thought to be Prinzmetal's angina, along with other chronic issues, my pcp called me a hypochondriac and my local cardiologist threw up his hands and told me to find a doctor at a research hospital. Through a roundabout journey online and on phone, I found a cardiologist at Tufts who turned out to be one of my elementary school classmates, but he couldn't do anything for me. He led me to a specialist at NIH who was kind enough to call me on the phone and discuss what he could do. But when we discovered that one of the drugs he used in testing could trigger my asthma, my hopes were dashed. However, he pointed me to research by a cardiologist with whom he was familiar at UPMC. Through testing, the new doc also found an arterial issue beyond my heart, diagnosed me with Fibromuscular Dysplasia (FMD) and referred me to a neurologist. That neurologist eventually dropped the ball on my care, so thanks to the FMDSA, I knew there was a program for FMD at Mass General, and I hit the jackpot. I'm now a participant in their research and get top quality care by a team of specialists. And they have discovered that the FMD played a role in my coronary artery dissection in 2005. This only took, hmmmm, almost 10 years.
I've learned to be a Take-Charge Patient the hard way, and I still have a lot to learn. How much easier my life would have been during those stressful years if I could have read this book! Even though I've become a veteran traveler on this chronic illness journey, I found an incredible amount of information and assistance in this valuable resource.
Award-winning author Martine Ehrenclou tells of her own journey with chronic pain, which, ironically, began while she was writing The Take-Charge Patient:How You Can Get the Best Medical Care. Her research with 200 medical professionals provided her with strategies to navigate the health care system, and she was able to incorporate the lessons she learned along the way to create an even more brilliant resource for others suffering with chronic illness and pain.
Patients and caregivers will both find a wealth of guidance and support in The Take-Charge Patient, a simple step-by-step guide to becoming a self-advocate and navigating the health care system (a most confronting enigma in and of itself) with confidence. Ehrenclou wrote the book with the intention to empower patients to become pro-active and assertive participants in their own health care. She guides you through preparing for appointments so that you are taken seriously and given better care; creating your own Health File; finding a good doctor or specialist; managing medication and medical errors; how to research your condition; covering the cost of care and health insurance; preparing for surgery; and clinical trials. She provides easy-to-use checklists and a plethora of resources and medical definitions, with an index to help you find just what you need to know.
The only flaw I found in The Take-Charge Patient is what seems to be a persistent issue with many publications these days, be they self-published e-books or hard copies from major publishers: Typos. This may not bother many people. A few are okay by me, but this many tend to irk me.
Having said that, I do not hesitate to HIGHLY recommend this quality book for everyone with chronic illness and their caregivers, as well as any family who will soon or later be confronting the befuddling maze of our health care system. It is easy to read, easy to use, and provides a wealth of information so that you can jump ahead in the queue and not waste years trying to find the best care for your health and well-being. This book is empowering and thoughtful, and I am so very grateful that Ehrenclou has the compassion to share her journey with us.
The Take-Charge Patient: How You Can Get the Best Medical Care (2012, Lemon Grove Press, LLC) is available as an e-book and in paperback from these outlets.