Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Monday, September 26, 2005

Day + 80, Battle of the Doctors

I've been getting nervous taking Lasix once every three days. I've taken it enough to know that this new prescription is only keeping the edema in check, not reduce it... and that's on the days I take it. I've been gaining 1-2 pounds of fluid each day on the days I take nothing.

My nephrologist called me back today, and I told him the bad news. He's not happy about taking responsibility for my prescriptions now that BMC has required me to do so. He hasn't seen me since before my treatment, and he's not comfortable with the data in my BMC labs. Making changes to a patient's prescription without sufficient information is dangerous, and that's what makes him uncomfortable.

I must admit that this tradeoff from BMC to my doctors is a little confusing and frustrating. I believe that since the treatment center had a team of doctors working on me until discharge, they should continue until at least the 6-month mark. This way we avoid the situation that I'm currently facing now.

I pleaded with my nephrologist to allow me to take the 80mg Lasix daily. While this will not reduce the edema, hopefully it will keep it in check until I am looked at. My nephrologist agreed, on one condition -- that I come back to Boston next week for labs, and to allow set up an appointment with him. With no bargaining room, I reluctantly agreed.

That means that this weekend, I'm going back to Boston. How I'll go about doing that, well, that's another story.

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