Thursday, February 16, 2012

Let me tell you a little about....

My disease.

I have an auto immune disease called FSGS (Focal Segmental Glomerulosclerosis).  It's kind of the reason I started this blog, actually.  And part of the reason I am all about living as green as possible....for better health.

So what is FSGS, anyway?

FSGS is a rare disease that attacks the kidneys filtering system, causing scarring.  This in turn causes Nephrotic Syndrome.  The kidney filters stop working properly and let the protein in the body that is supposed to stay in the blood, to start leaking into the urine.  You can read more about it here.

I started to notice back in September that I was having an unusual amount of swelling in my left leg.  I thought that it was only my left leg, too.  I didn't really think anything of it at the time and just let it go.  Then two days before Thanksgiving, my feet were so swollen that I could barely get my shoes on.  I went to my PCP, and she pretty much told me that she thought I had a blood clot and if I didn't go to the hospital right then, I could die.  Ok, so I went, no blood clot.

Monday after Thanksgiving, her office called and informed me that I just had a UTI and needed a repeat urinealysis and some anti biotics, but I wasn't sure I believed that.  I've had UTI's and they have never caused leg when I brought that up, I was basically told that my leg swelling was not a concern and all they cared about was this UTI.  I got the run around for days by the medical assistants and never heard from the physician herself.  So what did I do?  I got a second opinion from a different PCP.

He looked at my test results and within a week, I was in to see a nephrologist.  A week after that, I had a kidney biopsy.  Two weeks later, I was diagnosed and started treatment.

Right now, I am on a treatment of 60 mg of prednisone per day, among other things to keep my systems working.  The prednisone causes me to not be able to sleep...hence the blog.  I feel awful pretty much all of the time, and I am gaining weight like crazy, but I am optimistic.  And I am positive that this treatment is going to work for me.  So there's my story. :)

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