September 12, 2011

Kidney Lack-of-Update

This morning I am a little excited, and a lot of nervous. I am mostly hoping that I do not end up in tears by 10 am. I've been keeping a secret that is going to either pay off or blow up in my face, and I will know by lunch today.

You see, last year we moved. Yes, I've written about that a dozen times, so clearly that is not bothering me too much. I am no longer nervous about that aspect of my life, and it is not going to bring me to tears, that's for sure.

About six years ago I had a wonderful nephrologist. He is the one that I teared up with when I told him that I needed to leave his practice because 90 minutes of driving did not make sense for a 20 minute appointment any more. At that appointment he told me that he was going to ween me from the immunosuppressants that I had been on for several years already. With my departure from his practice, he was not comfortable with that plan any longer because he would not be the one monitoring me any more.

Fast forward five years and that brings us to last summer. During those five years my nephrologist in Maryland had basically kept the status quo as far as the immunosuppressants. There were other meds in and out of the regimen, but he did nothing to raise or lower the rough ones. In May (2010) when I went to see him for a regular visit it was also the visit to say "guess what, I'm moving in two months" to him. Unfortunately for me and my psyche he started our appointment by saying that he was going to ween me from my meds because it looked like my body was ready.

Then we moved and I had to find a new nephrologist on this side of the river. Oy.

It took me a month to finally get the guts to talk with Anny about weening myself from the meds. If two doctors, five years apart, felt like I was making enough progress to tell me that they would have weened me before finding out I was leaving their practice, I did not want to walk into another practice and have them stick with the norm for another five years.

She balked. A lot. Then we talked about it. A lot.

We came up with an agreement - I would ween myself from my medicine (cyclosporine if you want to look THAT up...) in agreement that I had one year to make an appointment, and if any major effects were felt by my body in ANY way, that year would truncate and make for an immediate visit to a professional.

That being said, I began to ween myself pretty much the week that we moved. I was out of work, so stress would be lower. I actually managed to lose some weight - might have been from eating better or from not taking the crazy medication that I had been on for eight years.

I wanted to feel good about myself. I realized that being tied to those meds had begun to make me feel hopeless and depressed a bit. I do not know that I could have articulated that a year ago, but looking back I can certainly peg that from here.

That brings us to today. In less than two hours I have an appointment with a new nephrologist here in St Louis. I will likely find out today how my protein (in my urine) levels are, which will be an indication of whether my "experiment" has either kept my health the same, brought about a good turn in my kidney journey, or set me back by a year.

I am hopeful but nervous. I am so filled with emotion right now that I genuinely have a fear of breaking down in tears on my way to work, no matter what the news is or plan of action becomes.


  1. Good luck, Rob! We'll be waiting to hear how you are. :)

  2. Oh, I am hopeful and nervous for you!! Good luck, and I'm anxious for an update!!