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.
February 3, 2018 at 7:59 am
Wow…just kept getting better and better didn’t it.