The title of this post may be a tad misleading. The best eye appointment would either be Dr. Sarraf telling me it has all been a dream and I don’t actually have RP, or Dr. Sarraf giving me a pill that would cure the RP and completely restore my sight. Given the fact that those two things are pretty unlikely……it was definitely the best eye appointment ever.
The first best part was that the whole appointment was (almost) like clockwork. I was only there for 3 hours, which is actually a reasonable amount of time given my past appointment times. I wish I could say that it was also pain free, but from the minute the tech was administering the drops, it hurt like hell. The first pain comes when she asks me to look up at the ceiling, directly into the huge fluorescent lighting fixture, without blinking, so she can put three sets of drops in my eyes. 3 seconds looking into a light like that is excruciating; hell, just being in a fluorescent lighted room is painful. It may not sound all that great so far, but, I was called into see the tech only about an hour after my arrival, and after the drops took effect, ushered pretty quickly into the imaging room to get scans and photos taken.
After another short wait, I was called in by the intern, who is lovely and was there last year as well. We chatted a bit about eye stuff, and then he examined my eyes with a light so bright, it felt like a layer of the inside of my eye was being burned. OUCH. Then, he asked if a student from France could have a look. With a smile, I agreed. I wouldn’t want to deprive someone of a learning opportunity. But, the students always look longer, make the light brighter and get so close that the casing around the light sometimes touches my face, as if that will give them a better look. It’s like the part of my eye that was burned is now being scraped with a hot blade. I am pretty tough, but I actually pulled away from her at one point because it hurt so much. I am making her sound like a sadist, but she was actually very nice. After the student had her lengthy peek at my retinas, the intern brought up ERG and suggested I may need to have another one. So soon? I felt like I was in the ERG torture chamber like a week ago. That shit is traumatizing. I told the intern, in a joking way, that the ERG’s seriously suck. He laughed, agreed, explained the importance, apologized, and said he would talk to Dr. Sarraf. Then it was back to the waiting room to wait for the final exam with Dr. Sarraf.
This may not be sounding like such a great appointment, but I promise, it really was the best appointment ever.
So, I wait a bit longer, get called back into the room, and listen to Dr. Sarraf talking to some other patients for about half and hour. I am not always an eves dropper, but remember, I can’t use my eyes, so listening to other people’s private conversations is about my only option while I wait. After not too long, Dr. Sarraf comes in and is polite and positive, as always. Then he examines my eyes. FUCKING OUCH!!!! He actually dimmed his light a bit (I really should find out the proper name for those lights they carry around) after the first eye; I think he could tell I was in pain.
So he finishes the exam and talks about the decrease in my vision between 2012 and 2016 and says he wants me to have a visual field test in six months to see if my field has constricted further since 2016 ( it most likely has). He tells me that the RP has still not started to affect my central vision, and that it may never, which is amazing news. Then he says I don’t have to have an ERG, which is smashing news…..and the really good bit, the part that makes it the best appointment ever. He referred me for genetic testing!
Last year, he said he really didn’t see any value in my having genetic testing, but a lot can change with science in a year. Apparently there is a treatment that is being administered to children with RP and it is having some great results, and although there is no treatment for someone like me yet, he said there is a lot coming down the pipeline and he thinks the genetic testing would be of great value at this point. I was over the moon. This is why I go through the pain every year, why I make sure I remain his patient.
I am super excited, not because I think there will be a treatment for me tomorrow or even in a year, but because having the genetic testing puts me on the radar. Hopefully, I will also be able to learn a lot more about my specific strain of RP and what it looks like from a genetic standpoint. I just kept telling Dr. Sarraf how exciting it all was and how cool the work with the kids was and how I was completely thrilled; I may have come across a bit nuts, but hopefully I was memorable!!!!