September 13, 2006

My Kidney Story - Part Three

If you need a refresher, please check out Part 1 and Part 2.

Prednisone is a steroid in the best and worst sense of the stereotypes. I believe that I would be at a healthier weight if I had not been on them for so long. Prednisone is very effective in most cases of FSGS, but after being on it for 18 months or so, they had to change my official diagnosis to Steroid-Resistant Focal Segmental Glomerulonephritis. But that is getting ahead of the story.

The spring that all of the diagnosis process was happening was the spring that I proposed to Anny. It was also the spring that I (with Anny) made the decision to move from Maryland to Manassas, VA so that I could take a full time job at the Presbytery's Camp. Since she is a teacher, we knew that no matter where we went, there are jobs for her. I was unhappy with my warehouse job, and I think that working there certainly did not help my condition, and my dream job had opened up.

Needless to say, that added stress to my body. Moving out of my childhood home for the first time. Learning to live with another person, who was much more tidy than I was particularly used to. Learning to work a crazy system of a Retreat Center. It was stressful on the one hand, but stress relieving on the other. It was the best decision for me at the time, a less stressful job, living with Anny, learning the new things that I wanted to learn at work. (I'm a Microsoft Access geek now!)

After moving to Manassas, we made a conscious decision that I would retain my nephrologist up here in Maryland. Although I knew deep down that his methods were still a bit behind the times, things seemed to be progressing nicely toward the goal of minimizing the protein excretion that is my disease.

I continued to take prednisone for a total of 18 months. Everything that I read said to cut back after 12 months. We began to ween my body from the overpowering steroid, but because my protein count creeped back up, so I went back onto the prednisone! I got to bulk up, but never did the whole exercise thing, so I got fat instead of muscular.

During those months, I got married. So yes, all of my wedding pictures have me with my extra-pudgy face. Thank goodness that you could not see my legs, they were very very thick!

That brought us to the late spring of 2002. There was general consensus that my body was not responding the way it was supposed to be on the prednisone. That led to further clarification of my diagnosis to: Steroid-Resistant Focal Segmental Glomerulonephritis.

Once again I began to worry about my choice of doctor, but it just seemed easier to stay with him. We made a decision to stop taking the prednisone and go a completely different route. Bring in Cytoxan. (HERE is a link to WebMD. Bottom line, nasty stuff) The form of cytoxan that I was put on was intravenous. It was described to me as basically Chemo, but for kidneys and not cancer. That's exactly what it was.

Cytoxan meant an overnight stay at the hospital, which meant that I had to go up to Maryland to get the treatment done. After hearing about how bad chemo was (and having experienced the nasty things it does with my grandmother) I was a bit freaked out. The experience overall, was not as bad as I had prepared myself for. The collateral damage to other organs was never determined, and probably never will be.

Like most people, I remember the worst of the experiences. I had to go for three intravenous treatments of Cytoxan. For the most part, the whole experience was okay. The nurses at the local hospital was GREAT to me. (As they have been to the other folks in my family that have had to go there) The eternal problem with going to an Adventist hospital is that they had not yet begun to serve meat. Well, the 'meat' that was in the sloppy joe was.... just gross.

If that's the worst thing that I remember, I think it was an okay experience.

The Cytoxan treatments of my FSGS had little to no effect on my health. Not positive nor negative. I was disappointed to the extent that I decided to leave the Doctor that I had been seeing for most of two years. We were happily living 50 miles away from the doctors office and each of the hospitals that he worked at.

A longer title for clarification of my diagnosis: Steroid-Resistant, Cytoxan-Resistant Focal Segmental Glomerulonephritis. It does not mean anything more than the original disease diagnosis, except that it gives future doctors some direction.

This post is too long, but is an integral span for the overall story. In the next part of the story look for an update on a doctor change, another doctor change, and new medicines!

1 comment:

  1. So you have become resistant to steroids and cytoxan? Wow, what a nuisance. I know what you mean about the weight gain. I gain a few kilos with every bout of NS. It is so hard to lose.

    This is very interesting reading. Have you thought of writing a book?