Paradise Kidney Foundation
Public charity that supports research into focal segmental glomerulosclerosis (FSGS) and educates the public and patients about kidney health and nutrition.
FSGS stands for Focal Segmental Glomerulal Sclerosis... not 100% on the spelling. My understanding is that it is basically the little filters in the kidney organ that are shutting down. As you know, the kidney's main function is to filter out toxins and fluid from your blood stream, so the shutting down of the little filters can lead to kidney failure. However, each person's body deals with it differently so it could be very fast (the collapsing form) or it could take many years - if at all. If your doctor says to not worry about it, you need to trust him/her.
With that being said, you also should push your doctor to help explain it to you in terms that you can understand. There are some treatment options out there including plasma pherisis (sp?) that works through your plasma.
Take an active role in your health and don't let the doctors/nurses get by with just blase answers. Make sure you understand what you feel you need to before you let them leave. If possible, bring someone else with you to the dr. appointment and ask them to help.
They have a very thorough briefing on kidney disease and its treatments in modular form so that you can do a little at a time. Very easy to understand and covers most aspects of kidney disease, dialysis, explanation of test results, etc. There is a GFR calculator on this site as well as at the kidney school site. It is an indication of the current severity of your disease