Thursday I had my 6 month follow-up with Dr. B, my Ophthalmologist. He is the longest standing member on my team and was the first to mention APS back last Oct. when I first met him, when I first had the Occlusion in my right eye. This appointment was a long one, most of my eye appointments are. They range anywhere from 2-3 hours and I get shuffled from various rooms to do different parts of the exam before actually seeing him briefly for his part of the appointment.
This appointment, something new was added, because of one of my medications. I’m on Hydroxychloroquine, the generic of Plaquenil. This medication is commonly used to treat autoimmune conditions such as Lupus and APS. It is an antimalarial and while it is normally tolerated very well, it can in some rare cases cause damage to the retinas in some patients. Therefore, it is important to get visual field testing done regularly to make sure this isn’t occurring. Due to the lower doses that are prescribed nowadays this is less of a concern and I’m on 200mg a day so Dr. B said he wasn’t concerned at all really, so I’ll only have to get the test done every year for a while.
Here’s how the appointment went. I checked in, and waited for them to call me back for the first part. Eventually the first nurse came and got me. She took my vitals, updated my medications list, ordered the tests that needed to be done for the day, and did the vision acuity test. She then numbed my eyes and did the pressure test to make sure I didn’t have glaucoma. She then escorted me back to the waiting room to wait for the next part. She didn’t dilate my eyes at this point since I needed to do the visual field test. I should mention I absolutely hate how the numbing drops make my eyes feel. It’s just such an odd sensation! Not to mention they turn them yellow!
After a short wait the next nurse/tech came and got me and took me to a different room to take my retinal scans, I’ve had this done since my first appointment. Basically I put my chin on this little rest and I look into this big machine at this asterisk with one eye and focus on it and I can’t blink while they scan my retina. Then I have to do the same thing with the other eye with my chin resting on the other side of the rest. After this part she handed me off the next tech.
This is where the new part came in I had never done before. She had me sit at yet another set and stare at a sailboat while she measured my eyes. Then we were off to another room to do the visual field test. This is the test I will have to have yearly from here on out. It consisted of me going into this tiny room. The Tech entered in some information into a computer that was hooked to a machine. It was squared, but had a hollow concave area where I was to stare into. There as a place to rest my chin after I placed an eye patch over my left eye. She handed me a controller and explained that every time I saw a flashing light I was to press the button on the controller. I settled into the chin rest and immediately felt claustrophobic. I have no idea why, it wasn’t like my head was actually in the concave area but I felt surrounded. She told me to stare at the four dots that were illuminating faintly in the lower middle area and to make sure I blinked normally while the lights flickered around. She then began the test. After several seconds the 4 lights went away and one brighter focal light appeared and she said to continue staring at it and to continue marking the flickering lights with a press of the controller. This went on for what seemed like an eternity. While this was going on her and Doug talked. I kept thinking, gosh this test is lasting forever! Kept wondering, how people with ADHD make it through the test. Finally the test was over. She returned to the computer screen and in a mildly panicked voice goes ‘Was that the eye with the occlusion?’ and quietly answered ‘Yes?’ She breathed heavily and in the same breath said, ‘Good! because there’s this whole corner where you saw nothing, and it clearly mapped where an occlusion would be.’ Uhh geez thanks lady! We then switched eyes and did the other one. There was no areas of blindness in the other eye, thank goodness! She then numbed my eyes again, put the dilating drops in and sent me back out into the bright waiting room to wait for them to dilate.
Several minutes later Dr. B’s assistant came and called me back for his part of my appointment. His room is all the way back in the right corner of the place. It’s a large room, with the exam chair and equipment, a shelf, a chair for a friend, there’s the place where his assistant sits, there’s also a shelf across the room where this model of an eyeball sits. I only remember this thing because at my first appointment he grabbed that thing to try to explain to me what happens when someone has a stroke in their eye. Now every time I’m there I see that thing and I smile. It symbolizes the beginning of the road to answers. It symbolizes the beginning of not being so afraid, of knowing I wasn’t insane after all, even though I had people telling me it was all in my head at the time, I listened to myself, to my body, I kept pushing for answers because I knew something was wrong. I was right. It symbolizes the beginning of a relationship with a doctor that has really gone out of his way to help me get to where I am today.
After waiting for a few minutes in this room, Dr. B and his assistant came back in. Dr. B is tall, lanky, older and dignified. He’s someone who enters a room and you just know everything is going to be okay. He shook my hand and asked me how I was doing healthwise. I updated him on everything and he then took a look in my eyes with all the special tools he has. He made comments to his assistant while doing so. Then after he was done told me that my occlusion was healed. The blind spot will always be there, there’s nothing that can be done about that, but the injury itself is healed properly. He was extremely pleased with how well it had healed. We talked about Plaquenil, and Imuran. We also talked about Lupus, and he dictated a note to Dr. L, my Rheumy. It went something like ‘This is a note for Andy L. I’m here with our patient, I’m recommending she come back in 1 year for her next check, she is doing well on Plaquenil and Imuran and I recommend the doses stay the same. I also recommended she start artificial tears to help with the ocular sicca you sited during your evaluation of our mutual patient. Patient is doing much better than when she first came under my care in Oct. Her BRAO has healed and I will see her in 1 year for next vision check.’ This part of the appointment wrapped up with him ordering pictures of my right eye and I chatted with his assistant for a few. She asked me if Dr. L had ever mentioned Undifferentiated Connective Tissue Disease and I told her I had seen it coded on my paperwork once, and since then it had just been called ‘lupus-like’ and things like that. That as far as I was concerned given my family history, that I have APS and everything else, it was Lupus. She smiled and laughed a little. She then went on to say she sees one of Dr. L’s colleagues and is being treated for UCTD as well but is only on Plaquenil. I constantly run into people who either go to Dr. L or to someone in his office. Seriously it happens at least once a week it seems. It’s crazy how frequent it happens. After the small chat I thanked her for her help in all this, she’s been there from the beginning too, so she knows how frightened I was that first day I sat in that chair. So she could see the difference as well. Then Doug and I made our way to the waiting room to wait for the final stop for the appointment.
A little while later the last tech came and got me. This is by far my least favorite part of the appointment. You take already dilated and light-sensitive eyes, and then you take pictures of them. This involves bright flashes of light and staring at a green light to get the position of the eye right for the pictures. It is not fun, and for several minutes afterwards I can not really see out of my right eye. The pictures are cool though. At some point I want to get copies of all the pictures that have been taken of my eye since October.
After this stop it was time to check out and I scheduled my appointment with him for July 2, 2015. That’s the next time I’ll see him, unless something new occurs between now and then that requires me to make an appointment. Oh… and the good news is…. even with the blind spot… my vision is still 20/20!