You ARE Part Of The Process

Readers of the blog have repeatedly asked me to include reviews of the book and I have repeatedly forgotten.  Ignoring what that might say about me as a person, I’ve included the Amazon reviews today.  We’ll have to wait for another blog to include the B & N reviews or the blog would be more than double the length of the longest one so far. You can order the book on Amazon or B & N in both print and Kindle, but only print at myckdexperience.com. If you’d like a print book, I can mail you one at the discounted price of $10.00 and you can have me personalize it, too.  Enough selling!
Now, about being involved.  The article I’ve included today has to do with  the idea that the patient must have a say in determining which tests (s)he takes and is written from a physician’s point of view.  I discuss this in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease and you’ll notice that some of the reviews mention it, too.  This is your body, your life. Certainly you should seek the advice of medical experts, but the decision whether or not to take (insert name of medical test) is ultimately yours. This post is from KevinMD.com.  The URL is:  http://www.kevinmd.com/blog/2012/05/test-test-include-patient.html. As usual, the comments in brackets are my own and not part of that post.
 Shannon Brownlee’s recent post, “Don’t discard shared decision making on the basis of PSA testing,” [that was a previous post on the same blog] couldn’t ring more true. The crux of shared decision making is that the patient must decide, with his or her physician, which tests or procedures make sense, given the various risks, tradeoffs and outcomes. Discarding the construct on the basis of one test (PSA testing) [in that previous posting] is not only poor form in that it is a sample of one, but also what might not seem like much of a choice to some may be the biggest choice of all to someone else.Choice is the operative word in this debate. Patients need to know their options, regardless of physician opinion or what research says would probably happen (i.e. a false positive). It is up to the patient to choose whether the odds are worth it to them. And while PSA testing [again, this post refers to all medical testing, not just PSA]  may not be strong in validity (though the research does conflict), causing some doctors to (erroneously, in my opinion) consider it non-elective, there are certainly other common medical tests that warrant shared decision making, such as colon cancer screening, for example. In addition to the decision of whether or not to be tested there are several choices about how to get tested and then after that several choices about what to do in the event that a polyp is found. When medical evidence supports more than one approach to testing, patients should be informed about their choices and providers should respect their preferences.Shared decision making is not just the right thing to do, it is one of the most effective ways to combat the myriad health issues affecting us today – quality, cost, satisfaction. Shared decision making is not meant to encourage or discourage certain tests or procedures – it is meant to involve and educate each patient so that no medical choice is made without them.  And that makes patients happy – exercising the right to be involved in decisions about their care. Once educated, patients do tend to select less invasive procedures on average, as Shannon notes, and costs thereby go down as does the risk of medical error or unwanted care. A randomized controlled trial in the New England Journal of Medicine also produced these effects: a shared decision making intervention produced 9.8% fewer inpatient and outpatient surgeries and 11.5% fewer hospital admissions.

Shared decision making makes healthcare better. To my fellow physicians trying to determine whether to test or not to test – include the patient first. Is the patient involved? That is the real first question.

Peter Goldbach is Chief Medical Officer, Health Dialog.

So, read the reviews below and then get involved in your own life.  Ask questions, weigh the options and let your medical expert help you make YOUR decision. 

 

This book includes TONS of definitions and images and is a good read for anyone looking to learn more about kidney disease — whether your a doctor or a recently diagnosed patient. Her perspective is real and her stories will relate with many. The book touches on many topics from related health complications to dealing with nephrologists and maintaining a kidney-friendly diet. If you or someone you know is facing CKD, I highly recommend reading this book. Take experiences from those who have already gone through it and are looking to help.
Gail Rae’s story and book are a terrific resource for anyone facing the challenges of CKD.  “What Is It and How Did I Get It?” is an honest, personal, forthcoming account of what it takes to stay on top of your own health. It’s great that Gail empowered herself by education and learning — resulting in trusting herself.  Hopefully, her story will teach others to take control of their own health by eating the right diet, exercising, and taking the time to understand the myriad of information that comes from the medical world.  She does an excellent job of explaining what happens once someone learns they have kidney disease.  From what happens with every medical exam, test, visit to a doctor, researching medicines, nutrients, causes, body functions, physiology, etc…touching on every aspect in a very helpful way.  This book is a must read for anyone who has any questions about kidney disease, whether it’s personal or for a loved one.
This is a must read for anyone who has kidney disease. I had the privilege of reading Gail’s book and  interviewing her on the radio. For anyone with kidney disease, this is one of the best books around written by someone who has kidney disease. I recommend this book highly!!!!!!!
Gail Rae’s book, What Is it and How Did I Get it?: Early Chronic Kidney Disease provides information about this disease from the patient’s viewpoint. Having dealt with many doctors while dealing with a different health issue, I have learned how important it is to understand what all the tests and procedures mean. From my viewpoint, it’s also important to know how to talk with your doctor and even more importantly in my opinion to know how to get the doctor to talk with you about prognosis, treatments, and any questions you have. Her book gives you the basic understanding about chronic kidney disease and addresses issues that can puzzle and frighten patients. She gives you her experience as a patient as well as information she’s researched trying to find her own answers. A useful resource for anyone dealing with Chronic Kidney Disease.
 This book is wonderful because it explains all you need to know for early stages of ckd and not in medical terms, but in terms that everyone can understand. The author was so passionate about getting the information to others who are going through what she went through as this information was not avaialble to her. Her altruistic motive for this book is also what makes it wonderful. I would definately buy a copy if I were you.
Having lived with autoimmune diseases since my late 20’s, and I know first hand what it’s like to get a new diagnosis.  Even with the internet, it’s hard to get solid, reliable and empathic information.  This book does it all in an easy to read format.  I think this is useful for a person with any new diagnosis because it highlights the issues people wonder and worry about.
 As the daughter of a mother who has early stage CKD, I have to admit at first I panicked at the diagnosis. What exactly did it mean? I was relieved to find this book and even more so relieved to find that it was written in plain English and not Medical-ese. Author Gail Rae has written an easy to follow book not just for the newly diagnosed early stage CKD patient, but, also for their family members and friends. There’s even an entire chapter dedicated to questions raised by friends and family. I highly recommend this book for both the newly diagnosed early CKD AND their family/friends.
 This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness.
I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations.  For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!
This book is especially good for the newly diagnosed with CKD. So much information in a well written format. The author, a teacher and a writer uses her excellent skills to make this disease easier to understand and “navigate”. Highly recommended. Medical specialists should give this to all of their kidney disease patients.
Thanks for the chance to let you know how others view the book.
Until next week,
Keep living your life!
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