I was astounded today when I opened my mailbox and found an unsolicited copy of my patient notes from my Rheumatologist. Almost as shocked as I was when he gave me his e-mail address. I have 5 specialists I see regularly. I have a LOT of experience with doctors. Some good. Some bad. Some horrible. This was a first and I was just blown away.
Why was I blown away? Why should I be? I mean I pay good money for that information. I PAY HIM. He is, for lack of a better term, my employee. I am not a stalker. I am a patent. I deserve to be able to know what is being said about me. I deserve to be able to contact my doctor without having to wade through an entourage of MA's, RN's or some random dork who picked up the phone.Waiting a week to hear back is often times unacceptable. We live in an age of technology and patient empowerment. We need to take advantage of that.
Cut to the chase. As patients we are a part of our medical team. We are the most important part. We are the CEO. At the end of the day the medical staff goes home from work to their lives. This is our life. We have to live with decisions made and we need to be active members of the team. We owe it to ourselves and our loved ones.
How? Personally I keep a mental Rolodex of dates, dosages, procedures done, diagnosis given. I keep a file at home of copies of lab results and doctors notes. I'm an animal. When I was in complete kidney failure in 1999 I kept a journal. A 5 subject notebook of everything. I wrote down what I ate, how much fluid I drank, what meds I took, how much urine I produced, my blood pressure, daily weights and whatever else I thought was important. That book was my Bible. I carried it everywhere with me. I believe that book was an integral tool to my walking away from kidney failure. I was a member of the team that saved my life. I will probably start keeping a journal again because things are getting more intense. I can also tell from personal experience that doctors treat you differently when you are engaged with your health care. When you care, they seem to put a little more into it. Just a personal observation.