In the beginning Jan-June 2009, I was on a lot of meds. I took ~15 pills a day. That is not including my phosphorus binders. I have to take 5 with each meal and 2 if I have a snack. So that is an additional 15 pills. Overall, I was taking about 30 pills a day.
Now, things are much better. I take 7 pills a day and still the 5 phosphorus binders with each meal. I seldom snack so that is not an issue. Phosphorus is in everything. There is no way to possibly eliminate phosphorus from your diet. So these pills I take with my meals, bind to the phosphorus and helps remove it from my body. Phosphorus is a BAD and dangerous thing for dialysis patients. If your phosphorus gets too high, it can build up in any area of the body. If it stays high for a prolonged time frame, that body part can fall off.....any body part! I have read stories of men who lost their penis to high phosphorus levels! Not kidding guys! People have lost their fingers, toes, any part. So when I feel tempted with a piece of chocolate or piece of cheese, I simply look at my hands and ask myself, which do I want more?
Here is a story of incompetence from my home dialysis unit. Back when I was really sick my phosphorus was ~9.0. The goal is to stay between 3.0-6.0. I was 9! I called the dialysis unit and told one of the nurses my number. She just laughed and said, "that's nothing, we have patients in here with phosphorus of 10, 12, even 14!" I was shocked. How could she not take this serious. I immediately called my aunt to figure out what I needed to do to get my phosphorus under control. This was a turning point for me and the renal diet.
Linda Burke left a comment for Jeff Wilhelm
6 months ago