New Doctors, New Information

Nearly 30 million people in the U.S. have CKD or nephropathy (slow deterioration of the kidneys) and that number is projected to increase by 7% each year.  That’s 13% of our country’s population. Now I am one of them.  40% of this kidney failure was caused by diabetes, although after having had diabetes for ten years or more.  Mine wasn’t.

Before my first appointment with the nephrologist, I amassed and read everything I could from the internet.  Some of it was contradictory, some of it was really old, some of it was too scientific, some of it seemed to be right on the mark, but all of it was confusing no matter how simplistically it was written. I had no frame of reference and needed help interpreting what I was reading.

I knew I would ask the nephrologist for some books that were neither too scientific nor too simplistic. That’s how I learned: I read books, even with the internet available to me. Sometimes, as in this case, I learned by writing a book about the subject.

So I confused myself many times over until I saw this nephrologist.  He did explain, but so quickly that – again – I couldn’t understand it all. He knew his stuff, that was abundantly clear, but his style was paternalistic while I needed a doctor who was interested in working with me rather than unilaterally taking care of me.

It’s a small distinction and I mean no disrespect to my first nephrologist; I just needed a different style of doctoring. Prior to having this disease sneak up on me, I may have been perfectly content with his style. Now I was nervous that my body wasn’t telling me everything and I wanted an active role in monitoring it.

Luckily, there was another doctor in the same practice that one of the nurses thought I might be able to work with.  She was right.  This nephrologist had the same information as the first one, but his style was more open to partnership with the patient rather than taking the sole responsibility for the care of the patient.

Many patients prefer the paternalistic type of doctoring and there is no shame in that.  It’s almost like a marriage: you choose each other based on your particular needs. The first nephrologist’s style and mine didn’t match at this point in my medical history, although they might have just a few months before when there hadn’t been anything seriously amiss in my body.

By this time, although I still had so much to learn, I’d already been to see the nutritionist associated with the practice.  She had started to teach me about potassium, sodium (which I already knew to avoid since I had high blood pressure), phosphorous and food units.  She also gave me something magical: a printed copy of the renal diet. Here was something I could relate to, something I could turn to constantly to look up whatever I wasn’t sure about, something I could carry with me as my security blanket until I got a handle on just what this chronic kidney disease was and how to deal with it.

This second nephrologists explained, and in all honesty I do believe the first one mentioned this too, that they didn’t really know how I got this disease which is so prevalent that more than 25% of Medicare, roughly 42 billion dollars, went towards its treatment. In fact, the U.S. has the highest rate of CKD with 210 people per million having it and two thirds of it caused by diabetes or high blood pressure.

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Published in: on September 10, 2010 at 2:49 pm  Leave a Comment  

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