A year after Dx day, I returned to Jules Stein for my 1 year follow up appointment.  Dr. Heckenlively had moved on to more research oriented pastures and I had been shuffled off to Dr. Sarraf, who I guess had been assigned half of Heckenlively’s RP patients.  Luck of the draw; Dr. Sarraf is wonderful, even if he gave me some really shitty news the first time I met him.

I only had to bear one test before meeting with the doctor, but I still felt terrified. I felt like I was waiting to be sentenced all over again; probably because there is no predicting what changes have occurred in a year, when you have RP.  It is a disease with no rhyme or reason.  I hadn’t had much of a chance to ask Dr. H any questions the previous year, so I was determined to get some in with this new doctor.  I wanted to know how much peripheral vision I actually had left.

A normal visual field spans about 180 degrees.  That day, Dr. Sarraf told me that my visual field was between 50 and 60 degrees.  I had lost over half of my peripheral vision; no wonder I was constantly bumping into things.  And that wasn’t the worst news for me that day.  I was expecting that news.  Then he told me I have cataracts in both eyes.

Cataracts?  What the hell?  How can I have cataracts?  Old people get cataracts and I am only 34.  Wasn’t it enough that I had lost half my peripheral vision because my retinas were slowly dying?

I learned that day that most people with RP develop cataracts, and that no one knows why.  I wondered what other gifts RP had in store for me.  The world was becoming my dark oyster.