One Woman’s Journey – PXE

When I had my first bleed in February 2004 I thought for SURE that I would be legally blind by February 2006, maybe sooner. I was CERTAIN of it. At the time the only treatments available were thermal (aka hot) laser and PDT (aka cold laser). Since my bleeds were well outside central vision I couldn’t do PDT. We chased those first few bleeds quite a distance until they were only two or three tiny squares away from the central dot on the Amsler Grid. I felt doomed.

Then I “got a grip”! After four hot lasers my doc and I had a “discussion” (let’s just say I wasn’t very nice!) about how I wanted to know MORE about my treatments and how I felt like he wasn’t telling me the truth because he wasn’t sharing DETAILS. I wanted to discuss with him whether we needed to be aggressive or conservative … heck, I had him blow the Fluorescein Angiogram (dye test) photos of my retina up to a huge size so that he could show me EXACTLY where the bleed was and EXACTLY where he was going to aim that laser beam. He and I now have a wonderful relationship. [...] continue the story