FSGS

I FINALLY met with my nephrologist, Dr. B, today to discuss the findings of my biopsy.  She told me over the phone when I was in Utah that my diagnosis was Focal Segmental Glomerulosclerosis. Since then, I've done a lot of researching on the disease & treatment so I would be prepared for today.  I found a GREAT website that has up-to-date treatment & research done by doctors.  I wanted to make sure it aligned with what my neph said.  And it did!

I start Prednisone tomorrow.  Its a high dose (60mg) with hopes that within a few months, it'll jump start my glomeruli (protein filters in my kidneys) to start working.  Prednisone (a corticosteriod) comes with some nasty side effects.  Weight gain, severe mood swings, hair growth, softening bones, etc... its bad stuff.  I read somewhere that it causes fat deposits to show up on your face, back of the neck & stomach.  Great...  I'm going to look like Quasimoto.

But for real-- I've also read on FSGS support sites & blogs that the side effects of the steroids were so bad, some people chose to go off them.  They said they'd rather live a shorter life than be on them.  It makes people confused; saying things they don't mean.  Some people don't have any control over their moods & it can be severe.  One girl said she had blond hairs up to an inch long growing on her face and sweats uncontrollably.  Another lady said it made her really aggressive and confrontational.  If something, anywhere, made her upset or offended her, she couldn't stop herself from getting in that person's face.   Another girl said she doesn't sleep at night & cries all day.

I am a firm believer that humor is essential in getting through difficult times in life.  So here's to the humor that is coming my way... and everyone: watch out.