SAVVY PATIENT’S TOOLKIT EXCERPT

"I'm sorry Mr. Corbett ... I don't know how to tell you other than to say: You are in kidney failure. Your bladder has been blocked for some time and is the size of a 5-month pregnant uterus. You must be admitted to the hospital immediately. We will drain your bladder. Because it has been blocked for so long, your kidneys may not be able to regulate fluid properly resulting in a deadly chemical imbalance in your body. My first job will be to save your life, the second to keep you off dialysis as long as possible!"

These words dumbfounded us. We knew he had had a change in his health status for the six months prior to this incident, but never dreamt he was in a life-threatening situation.

I was supposed to have left for a women's retreat that morning; my bag was packed. I had led the planning team and was to be the emcee. I told the team I would arrive late because my husband's doctor ordered a kidney ultrasound and I needed to be with him. Needless to say, I never went on the retreat.

This kind of news is not what one wants to hear when he goes for a test. One year retired, my husband was in the groove of enjoying his leisure time. A long year followed. He did live through the night and is not on dialysis, but one hospitalization led to another and then another. We felt the year would never end. He is very fortunate. At this writing, he has 50 percent kidney function, his bladder works well, and the serious anemia and neurological problems are gone. We are truly blessed.

When my husband left the hospital the first time, we obtained a copy of his entire chart for our records. Reading through the information in his chart, we noticed that a blood test done a year earlier was the first indicator something might be wrong. One kidney function test result was just above normal.

The doctor evidently didn’t feel it warranted attention. Was it the beginning of a trend? He didn't know because he didn't check it again later to see if it might be. When various kidney failure symptoms began, they were not recognized; the doctor did not refer to past blood test results, nor did he order new tests.

We could see that our doctor failed to put together the pieces of information he had as my husband's health deteriorated. These pieces included this initial blood work, a sudden rise in blood pressure several months later, incontinence, gray-yellow skin color, an overall decrease in well-being, feeling cold much of the time, and more. We had total faith in our doctor, and it did not occur to us to get a second opinion or to ask for a referral to a specialist, which, in hindsight, we should have done. His doctor should have suggested seeing a specialist when he was unable to piece the symptoms together.

Looking back, my husband thinks he did not relay his symptoms and concerns in the most effective way. He realizes he did not know the questions to ask or how to advocate for himself. As his symptoms continued to persist and worsen, I became increasingly uneasy with the reports he gave me when he returned from his appointments. I decided to tell the doctor my observations and concerns at my next appointment, since we used the same doctor. The doctor agreed to order tests, but by that time, the kidney test results were well above the normal range. The doctor attributed the test results to a new blood pressure medication he had prescribed months earlier. He decreased the dose, but still failed to put the pieces of information together; and kidney damage continued to worsen during the month before the ultrasound was ordered.

I lay on a cot next to my husband's bed that first night in the hospital, unable to sleep. I listened for every breath and thought, “There has to be a better way than this for us to take care of ourselves”. I had spent my working career improving processes for hospital labs and businesses. It was time to improve our own processes of record keeping, tracking health care issues, and communicating with our health care providers.

We spent the next two years in specialists' offices, going through test after test, and through three more crises. The Chronic Condition Form, the first of 42 forms in the Health Record, developed in my head that first night in the hospital, every detail clearly conceived. My husband, most likely, would not have suffered kidney failure and permanent damage had we obtained copies of test results, tracked and researched his symptoms, researched test results, and been more proactive in his heath care. Medical error stories appear throughout this book to illustrate other ways the Health Record system would have helped prevent medical crises. We have used our Health Record notebooks since I started writing this book. Through their use, we have developed healthy partnerships will our health care providers and helped them help us. We changed the way we interact with them. They, in turn, have changes the way they interact with us.