How did I come to write The Savvy Patient’s Toolkit? A question I am often asked. The first form for the book emerged in my head the night my husband was told he was in kidney failure and might not live through the night. He had had symptoms for months, but unbeknownst to me his doctor had been talking to him about his anxiety each appointment instead of thoroughly assessing his growing symptoms. She had failed to connect his symptoms to each other or to his underlying conditions – an enlarged prostate and high blood pressure. Both of these conditions can lead to kidney problems. He had gone past problems to failure. He did live through the night, but lost one kidney and significant function of the other.
He had a team of five doctors caring for him and keeping up with everything was a challenge. Even more of a challenge was keeping his medical team informed about what each other was doing and why. Simple blood tests were ordered frequently and each doctor needed many of the same tests done but couldn’t make decisions until they saw the results of the tests. I had been getting a copy of tests, putting them on a chart I developed and began letting the doctors know we had the results. His appointments became more effective and efficient. As time passed, I developed other forms to help me track not only him, but my elderly neighbor, whom I was frequently advocated for the ER and the hospital. People wanted the forms and as they say, “the rest is history.
I had spent many years in industry as a Total Quality & Knowledge Management trainer and consultant. I was known as the “Queen of One-Pagers”. I often created one-page documents for executives that enabled them to absorb a lot of information and see how the pieces of information connected to each other. I used the same thought processes and format to create the forms that eventually became the book.
In the 1980's and then again in the 1990's I experienced three life-threatening medical errors. My errors were different, yet the same in some ways. It was now time to get more involved in our care. As I wrote about our stories in the book, I realized there were things we could have done that might have prevented the errors, especially in my husband’s case. These plus other stories in the book and followed with “Lessons Learned” - things we and the doctors should have done differently. I have already told you what I feel the doctor did wrong or could have done better in my husband’s situation. Examples of things we could have done or done better are:
• I should have been going to his appointments with him. He couldn’t remember much of what was said during his appointments (studies show we forget at least 50% of what is discussed the minute we walk out the door of a medical appointment) therefore, I didn't get a full understanding of what was or wasn't transpiring. Had I known I would have gone to his appointments and been a second voice for and potentially asked questions that could have led to a timely diagnosis.
• He didn’t know how to describe his symptoms effectively – tell his story
• He didn’t know the questions to ask
• He didn't get a second opinion
To learn more about The Savvy Patient Toolkit feel free to go to my www.SavvyPatientToolkit.com.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.