My Eye Diaries: my eye surgeon copyright by Tonia Darling 3/26/09 My personal story of ROP (retinopathy of prematurity) All rights reserved

by me. You don't have my permission to copy, distribute, sell, publish, transmit, or post any part of this material anywhere online or off. Please respect my work. If you have any questions or comments, or request, please contact me. Thanks! I remember right before my surgeries, Dr. Kieval was standing at the foot of my hospital bed in his turquoise scrubs and cap, and I was asking him questions. He seemed like a mountain, tall and all-knowing. I had never had surgery for anything before I was diagnosed with ROP and retinal detachment. I was transferred to another bed and wheeled into the surgery room. The surgery room smelled strange and clean. The lights seemed bright. They must have started dripping the anesthesia slowly before because I was starting to feel odd. I recall Dr. Kieval’s voice and he was patting the bed telling me to scoot up towards the front. As I was doing that I turned my head a little bit to look around me and I could see assistants in scrubs and caps, strange machinery, and lights. Everything was blurry because they had taken my glasses. I started to feel surreal and disoriented; I'm not sure if it was the anesthesia starting to work, or my anxiety. I layed my head back down and just closed my eyes. I was not even aware of being put under after that. It was such a powerful feeling, my self and body literally were in his hands. I cannot help but feel a connection with him. I have seen Dr. Kieval countless times over the past three years, since I was first diagnosed with retinal detachment; I cannot help but feel affection/gratitude for this man who is my doctor. He is an expert, he's always gentle and kind, he is paternal, knowledgeable, steady, like his hands in surgery. Surgery is a big experience because you’re entrusting your whole self and body into someone’s hands and expertise. For the first time, I experienced the anxiety-inducing feelings of being “under the knife”, or maybe it was the being “put under” anesthesia that made me nervous. Maybe it was because I was afraid I wouldn’t "wake up" again. Anesthesia is weird, it's not even like going to sleep because there are no dreams at all, and you don't remember falling asleep. I think they increase the amount right before they're ready to do the surgery, but it's like being knocked unconscious, or like switching off the lights. Waking up is like coming out of a really deep sleep. I think my surgeries only took an hour or two during the morning, but it took me all day to wake up from the anesthesia; I kept falling back to sleep and it was nighttime by the time I was awake enough to go home. Even though I trusted Dr. Kieval, I felt nervous and scared before I was wheeled into the surgery room. The anesthesiologist gave me some medicine to help. When I had my first surgery, it had taken me a long time to shake the effects of the anesthesia. I was sensitive to it, probably because I'm small. They changed the dosage for the second and third surgeries. I had to get a physical done before each surgery, and a urine sample in the same hospital where I was to have my surgeries. I remember the nurse telling me to go through the large double-sided elevator, up to the fifth floor; “follow the green and blue dots on the floor until you get to the urine lab”.

They put several wrist bands on my arm; since my arm is so small though, there was a lot of slack left over that they had to cut off. They put IVs in my arm and one in my hand which hurt. After the surgery, I remember drifting in and out, vaguely aware of my dad and others talking. When I emerged from the anesthesia, my eye was covered with a patch and it hurt a lot when I moved my eye. There was a sharp pain and scraping sensation each time I looked around. I was aware that I had to use the bathroom. I mumbled something like, “I have to go,” and I was helped up slowly. A nurse helped me to the bathroom. I was wheeled out of the hospital with a blanket over me. My dad drove me home; I had to use the bathroom on the way back and he helped me into a gas station because I couldn’t look up with a gas bubble in my eye. I fell asleep after barely managing to climb the stairs with my dad’s help and I slept in bed for about three days except for using the bathroom, having my eye dressings changed, and getting eye drops. At the time I was staying in a group home(which I hated). I am happy to say I live in my own apartment now. So I could watch some television, I used a hand-mirror tilted so I was able to see the screen. I had to sleep with my head face down for several days which got very uncomfortable. I had difficulty getting around because I could not look up and it hurt so much to move my eye. I was sitting at the kitchen table one time and wanted help to look for something. I kept calling for one of the staff or someone to help me but the only person who was in the room was an old lady who couldn't hear me. I got so frustrated that I started to cry; it was so frustrating not being able to look around just to get something. It takes several weeks after surgery for the eye to heal, both the retina, and the outside of the eye. The gas bubble takes several days to disappear; it's really strange, you can see it floating around inside your eye, like a giant floater. The gas bubble helps to heal the retina in place after surgery. After several days you can see it getting smaller and smaller then it finally disappears. After my surgeries I had to see Dr. Kieval for lots of follow up appointments. To check on my eye and retina, he had to take off my eye patch and open my eyelid. He also had to add extra drops. It was painful, but he was as careful and gentle as possible. Dr. Kieval could not return the vision I had already lost but he prevented the retina from detaching completely and from losing all of my vision in that eye, and I am very grateful for that. There is enough decent vision in that eye that it tries to work together with my right eye. My eyes are always “flashing” in certain areas, like an electrical flash every few seconds. It looks like white light streaking across my vision. It closely resembles the kind of flashing which is a sign of retinal detachment. Dr. Kieval says it’s caused by the vitreous in my eyes pulling on the retinas. I'm used to the flashing though. The first and second surgeries did not work; it was not what Dr. Kieval had done-my retina just did not want to stay in place. He used a gas bubble, schleral buckle, and some other things to re-attach the retina, but I’m not sure in what order. My third surgery was a success though. I kept the blanket, the post operative directions Dr. Kieval had written for me, and my wrist bands as mementos. Stan, a male assistant, and I think Dr. Kieval’s main technician took me into the picture room to take photos of my retinas. I was feeling upset because my second surgery had not worked, and I started to cry. Stan patted me on the shoulder to comfort me. I was scared of losing more vision, but I was also scared of having to go through another grueling, painful surgery. After he was finished, he showed me the pictures of my retinas on a computer screen, which was pretty neat.

I am usually the youngest person in Dr. Kieval’s office. The rest are usually older than me(in their forties, sixties, etc. )The obvious reason is that many eye diseases are agerelated and don't normally affect young people. Most young people do not have serious eye disorders unless they we're born with a certain disease or born premature like me. 2/26/09 I saw Dr. Kieval today to check on my eye about some floaters, this time my right eye. He looked at my eye in the machine and said to hold my eye in a certain spot. “There’s the stuff,” he said to himself. He held my face still. His hand is soft and always feels cool. When he was finished, I asked him what he saw. “Your retina isn’t detached but there’s a raised area that wasn’t there before.” For some reason, I thought that my right eye was somehow unaffected by ROP, but I realize now that that's not the case. Both eyes are equally at risk for detachment and problems. I hope my good eye will always stay good. He said he would need to do laser treatment to help prevent it from detaching so I wouldn’t need to go into surgery later. A female assistant checks my left eye for vision. She moves her hand around asking me if I can see it. “Nope, nope, nope,” I can see her arm move directly in front of me but cannot see where her hand is. In the nonblind part of my left eye, (the center), it is 20-200. I would be considered “legally blind” if both of my eyes were like that. I lost most of the peripheral vision in that eye when the retina was detached, and the middle part was damaged a little too. When I was in the laser room, I asked Dr. Kieval what the red light was in the machine.“That’s my pointer, that’s what I use to point the laser,” He is tall and powerful as he stands at his desk, looking at his papers. He adjusts the chair to a lower position so I could get my chin in the machine. He holds his hand on my face and adjusts my position in the chin-rest. I felt him put something over my right eye. I think it was a special lens to keep my eye open. “Are you set-ready to go? Put your forehead all the way forward. Keep your teeth together,” he said. “You’re going to hear some clicking sounds and see a flashing light, like a strobe light,” “Look all the way to your left. Beautiful.” The laser flashes in my eye and it’s extremely bright. I could hear a clicking sound each time Dr. Kieval zapped the laser into my eye. I could feel something dripping down my face on the right side. At first I thought it was blood but it must have just been what he used to put the lens on easier. I mumbled something about feeling some discomfort. “That’s just my hand putting some pressure on your eye,” he says. “You’re doing wonderful, kiddo,” It makes me smile uncontrollably to hear his calm, reassuring voice every few seconds. My left eye jerks involuntarily each time the light flashes. At one point the laser hits a sensitive spot going through the pupil, and the repetitive flashing light gets too intense; I jerk my head back suddenly. ”Ah!” I say. “No, no, no, no, no, no, no--!” Dr. Kieval says urgently and suddenly. “Try not to move your head back,” He didn’t sound mad, just surprised by my reaction. “That must have been a sensitive spot,” he says. “Are you okay?” “Just breathe, you’re doing fine,” “Did I mess you up?” My voice was shaky with disappointment with myself. I almost felt like crying. “No, you’re fine.” “Move your head all the way forward,” He kept steering my head to the right spot in the machine. “Here, try to keep your head still, and just move your eyes to the left, there you go,” “Here, hold on to the table,” he moved my hand up on the table and placed his palm over it. He said to relax and rubbed my shoulder lightly with his hand.

“We’re almost done,” he says. "Right there, keep your eyes in that spot. Beautiful." When he finished he said, "Now sit back and relax and keep your eyes closed." “You'll see red or green for awhile.” "Good job, you did wonderful." he says matter-of-factly. "Sorry I moved," I said. "It's okay, no harm done." Afterwards, I kept seeing a bunch of flashing in my right eye; i think it was just from being zapped from the laser. Meeting Dr. Kieval and getting my eyes treated would not have been possible without Randy's help, he was an older friend who happened to be an optical physicist and he worked for an eye surgeon himself. He knew several eye surgeons and contacted Dr. Kieval for me after I told him about my vision disturbances and even went with me to some of the appointments. Randy was an older friend of mine and was like a father to me; he was a very nice man, that is another story though. After my third surgery worked, I remember Dr. Kieval giving me an enthusiastic highfive in the hallway, which made me feel so good. Dr. Kieval looks like a T.V. surgeon, very handsome and he's tall. He literally has surgeon’s hands. His hands are big and smooth. They always smell like soap and I love it when he holds my face sometimes to keep my head still. Sometimes it makes me feel giddy and emotional because he's tall, paternal, and competent. He has silver-gray hair. I think he's in his fifties. Dr. Kieval is my #1 favorite doctor. I feel like I’ve known him forever. He’s the first doctor I’ve had where I’m old enough to actually care and have a meaningful connection with about something medically significant and on-going. It's impossible not to love him after I've been through so much with my eyes. 8:22am Wed. 7/30/08 I’m waiting for an appointment with Dr. Kieval at 9:30. I can hear his voice talking with the others down the hall. I see him go by in his white coat. Then he appears in the doorway real confidently and enters. He shakes my hand. “What’s been happening?” he says warmly. “Your eyes are doing okay-you haven’t seen any changes?” Sometimes he looks at my eyes directly instead of using the machine, using a large bright light attached to a helmet. He moves the electric chair up or down and has me lay back looking up at the ceiling. Sometimes he apologizes about the bright light and turns it down a notch. I like it when he says, “Look up to the left” or “to the right” or wherever when he has to see the backs of my eyes all the way around. It's so familiar, it's like a drill, but it never gets old. “Look way way up over your head,” he says. “Look up to the left…okay, look straight to the left…look down to the left…look down at your feet” He checks both eyes this way in a counter-clockwise direction. I tell him about the mistake on my birth weight. “You were just a tiny thing then,” he says, and notes it in his recording. When he’s done with that, he sits at his desk with his long legs crossed and makes sketches of my retinas in my chart. I ask him why I see Dr. Verra sometimes. “So you can get new prescriptions from Dr. Verra when you need them,” Dr. Verra is an eye M.D. (ophthalmologist) like Dr. Kieval and he has an eyeglass store in his office. Because I have an eye disease, it’s safer to get an eyeglass prescription from an ophthalmologist than from an optometrist.