We met with the head of the patient advisory board for a conversation last week. Michael and I have been asked to sit on a special panel in May. We will represent the "married couple" along with two other patients in front of a large auditorium filled with doctors. She asked if we would had a problem with that. HA! Get out of my spotlight! I love a good audience! But Michael? He is very...apprehensive about it. He is such an honest and open person that he worries he might say something inappropriate. I know he will magnificent and charm the audience.
They want a summary of my "story," how it has affected our child, and what experiences we had with the university system, both bad and good. For example, how to give bad news to the patient. That was so hard. I was alone. Michael had not come along as we were told that I had a curable lung disease. The problem was the disease had done too much damage and I was extremely ill. I was not going to be "cured."
Who gave me the information that I have limited time of 2-5 years on this earth? Who explained how I will die? Who couldn't look me in the eyes while giving me this information? A resident. A resident who had no experience giving bad news. It was horrible. I cried all the way home, told Michael that I still was not sure what I had or why or how it was doing damage to my lungs, but I knew that I was going to die early because the resident could not look me in the eyes while giving me the bad news. This was a fatal disease. It was bad.
When one has been referred to a huge hospital or university system, it is because the local doctors cannot handle or diagnose or treat a difficult illness. The chances are that they see and handle more fatal diagnosis's then a local hospital are good. Really good. The head of the advisory board told us of one of these larger hospitals where they actually ask how you want to be told bad news, even before the first meeting with the doctors. That is rather brilliant. I would have wanted Michael with me. I would have wanted a whole lot of facts. I would have had a lot of questions. I was totally bewildered and stunned.
Dr. K. finally arrived in my life several months later and she gently and kindly answered all of my questions. She refused to put a time limit on my life. I asked if I should begin to arrange my funeral or if I was going to live to seventy-years old? She replied, "We'll limp you along to 70 or longer." It gave me some hope. But, the nagging time limit the resident gave me kept playing in my brain.
As you may have noticed, I do not write about the meetings of the advisory board and will probably not comment anymore on the substance of the panel in May. It should be fun, though.
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