Dr. John Bokosky

Dr. John Bokosky loves his job, especially doing cornea transplants. “We have some great patients. They’re blind when they go in, and after a cornea transplant, they can see and function. A number of patients have dramatic turnarounds. It’s very gratifying. Sometimes they have associated eye conditions that limit their vision, but when you can’t see anything, it’s really hard to survive.”

Bokosky has been performing cornea transplants in San Diego for 15 years on patients of all ages, including newborns. “I’m a native of Chicago. I did my internship at Mercy, and after my cornea fellowship at University of Michigan, I came right back to San Diego.” Bokosky performs about 120 transplants a year. “I’ve done probably 1100 or 1200."

Bokosky prides himself on treating patients with compassion and enthusiasm. “When you can’t see, you can’t see what you’re eating, you can’t dress yourself, it’s hard to maneuver. When you have a patient that you can retrieve and give them vision, it’s a whole new world for them. Recently, I had a patient who was getting a seeing-eye dog; he was pretty much blind. We did a transplant, got him up, and he’s real happy. Now he doesn’t need his dog!

“Some of the patients have tough diseases, so they require multiple transplants or they have associated problems that make keeping a transplant clear difficult. A good candidate is one that has a scar on the cornea that limits the vision. The rest of their eye is intact, and they don’t have a lot of other problems. And they’re able to put in their drops and tell us if they’re having a problem. They’ve got to follow instructions and use their medicine and come in for follow-ups, because a lot of what we do to make corneal transplants work includes postoperative care. I’ll see those patients once a month for six months, then every other month. A lot of what we will do is manipulate sutures to improve their vision, eliminate astigmatism, or reduce it.”

Transplant candidates, Bokosky explains, are not limited to people who lost their sight to corneal damage. “There’s a lot of congenital corneal disorders that are amenable to therapy. [I have] a photo of a baby I’m holding who had transplants — the first eye at two weeks and the second eye at four weeks.” I glance at the framed black-and-white photo of Bokosky in scrubs holding a baby.

“So at times we operate on infants if they’re born with corneas that are opaque, and there’s no chance for them to see without a transplant. That patient had Peters Anomaly [which leads to corneal problems], and now I have pictures of her at 15 years old. It’s pretty gratifying.” It’s unlikely that patients like this one will need a later transplant to adjust for growth. “We create a type of matrix for the other cells to grow with. The rest of her eye will grow. We usually only transplant the central seven or eight millimeters of the cornea.

“Unlike many transplant fields, corneal transplants work well. It’s highly successful. About a third of the patients go through some time of rejection episode, but most of those can be saved if diagnosed early. It’s nice doing high-prognosis surgery, because people do pretty well. A lot of patients have a prognosis of 90 to 95 percent chance of having a clear transplant, and those are great odds. There’s a lot of pressure to try to keep them seeing.”

Positive returns may be what keeps Bokosky close to his patients. “I just talked to this young guy, his name is Roger, who’s 26 or 27 years old. He’s had multiple cornea transplants for Stevens-Johnson syndrome [a disease that affects the body’s mucus membranes], and I’ve been treating him for about 12 years. He moved here from Austria and was traveling through San Diego on a trip when I first treated him. He’s going through college, and he’s calling me now because his vision has just dropped off only eight months after a cornea transplant. He wants to get going again, and it takes a lot of hand-holding to get patients through that time. I gave him my pager number, and he beeped me twice in the afternoon yesterday wondering if we got him a good cornea yet!” Bokosky laughs. “I have to get a special cornea for him that has a very good surface because he has a surface problem. I just talked with him this morning and he said, ‘Now I can’t even move around anymore.’ They can struggle by for a while with ‘finger-counting’ vision, but his has gotten cloudy to the point where he needs something done. Overall, he’s been living a pretty normal life. He rides his bike around, he’s gotten married. I’ve even gone skiing with him! I enjoy taking care of patients where this makes a difference.

“A lot of my patients have one good eye and one bad eye; I fix the bad eye. It’s not as dramatic as when they have one eye or two bad eyes. Another patient was pretty much blind, and I did transplants for his hereditary dystrophy [a loss of normal clarity in the cornea due to a buildup of cloudy material], and now he sees 20/20 without glasses.

“People value their sight a lot, of course. Especially when you have a patient who only has one eye or has a bilateral problem. The nice thing about ophthalmology is that even if a patient has multiple diseases — let’s say macular degeneration — if you can give them some sight, they are able to adapt to it and are able to function. They may not be able to drive a car, but they can feed themselves, get dressed, maneuver, walk around the house without running into things. Often there are multiple diseases going on.”

Surprisingly, cornea transplants are not new to medicine. “It’s actually been done for a long time. It was first successfully done in the ’40s and was attempted before then. It’s a very sophisticated field — and a highly successful one. In fact, cornea transplants are the most successfully transplanted organ. Not much has changed in the last 15 years. The basic techniques are very similar to what I trained with 15 years ago. It’s an outpatient procedure. We have an ambulatory surgery center here that we do them in. I was just there to do a couple this morning.”

The cornea is the eye’s outermost layer. Its clear, dome-shaped surface covers the front of the eye, and though it may seem to lack substance, it is actually a highly organized group of cells and proteins. Unlike most tissues in the body, the cornea contains no blood vessels to nourish or protect it against infection. Instead, the cornea receives its nourishment from the tears and aqueous humor that fill the chamber behind it.

Cornea transplants are more common and frequent than other tissue transplants, largely because of the ready availability of donated tissue. “Although transplanted tissue in general is in short supply, in this town our cornea supply is very good. We can use a wide range of age, so we can use anything older than six months of age up to about 75 or 80, depending on how urgent the need is for tissue. We also don’t have to retrieve the tissue. We can get a cornea up to 18 hours after a person’s death depending on whether the eye has been refrigerated or ice-packed. We have media which allows survival of the tissue up to about 14 days. In actuality, we’ll use it within 5 to 7 days in the United States. If we have tissue that we cannot place, we send it overseas to countries that are less fortunate or have taboos against eye-banking or don’t have an eye bank themselves. There are also research projects that need corneas too, so we use all the tissue that we get."

Where do all these corneas come from? “The sole source of corneas are from people whose families generously offered the tissue to help other people,” Bokosky explains. “It’s a way that the family of someone who has passed away can get the gratification of knowing that their loved one was able to provide sight for someone else. We always get family permission, even if there is a donor consent on the driver’s license. We work with families very closely to avoid any kind of problem.

“We have a great eye bank here in San Diego. We also have cooperative settings where we can look at other cities around the country for transplant tissue if we don’t have what we need. Like my friend, Roger, who I was telling you about. He needs something special with a special surface. We don’t have anything available right now; I just talked to the eye bank and they’re going to look around the country. We fly tissue back and forth to meet our needs. What’s nice about being a corneal surgeon is the way we can schedule our transplants. We can predict when we’re going to get three or four in a day, so we can schedule something for three weeks from now, and if we don’t have anything local, we can look around the country. We also share tissue around the country this way.

Bokosky can’t imagine practicing any other specialty than ophthalmology. “I wanted to make a difference in peoples’ lives. A lot of medicine comes down to ‘lose weight, stop smoking, and exercise.’ In ophthalmology, people are very motivated to take care of their eyes. They’ll do whatever you tell them, so there’s a high compliance rate. And nobody dies. I like having a high prognosis for recovery when I operate. I like not having to do a lot of tests and depend on radiology a lot for findings. I can find them through the microscope or with a lamp in front of the eyes to tell what’s going on. The operations are relatively quick — about 45 minutes — and not in the middle of the night. It’s a great field."

Kevin Collin: "I’m on Genesee and Linda Vista. My hair’s in my face and my clothes are soaked, I have the right to feel sorry for myself! I’m freakin’ cold!"

Kevin Collin is noticeably nervous. At 7:00 tomorrow morning, he’ll undergo a sixth cornea transplant in his left eye. “To think that I can get my vision back is almost threatening to me, because I’m afraid I might lose it again. That’s frightening.”

With a face fixed in a permanent smile, Collin, 50, punctuates almost every sentence with laughter. The sadder his story gets, the more he laughs. “I have congenital glaucoma, partly because I was born very prematurely. I’m totally blind in my right eye, and I have some usable vision in my left eye. When I was younger I had more ‘mobility vision’ in my left eye. What you could sec at 200 feet, I could see at 22 feet. I was on the borderline but, basically, legally blind.

“I’ve lived here since 1980. I grew up in Manhattan, on the Lower East Side. I traveled across country when I was younger with a friend. We bought a car together and he drove — it was my job to be the observer, so I kept a diary. I could do some jobs, so we worked our way through the country. For about 12 years we traveled across country, and I lived in Phoenix for quite a long time. My vision started declining in about 1979, and they had just a county hospital — nothing like MediCal, and they told me I was going to go totally blind. I just could not accept that. I always knew that somewhere in my life I would go totally blind with congenital glaucoma, since it’s a progressive, degenerative disease — but I had to try at least one living. So I moved to San Diego. A friend of mine lived here and said that they had good medical insurance and good doctors.

“I came to see Dr. Binder in 1980 — he’s in La Jolla. He said he could help me, and I underwent four cornea transplants with him, but they didn’t take, because I also have what they call ‘dry-eye syndrome.’ Every time they grafted, no matter what medicine they’d give me, it would just dry and the stuff would shrivel up.

“The cornea is kind of like Saran Wrap. If it gets wrinkled, it’s really hard to unwrinkle it, no matter what you do. So once they graft a cornea, which is the window of the eye, you have to keep it from wrinkling or getting a scar across it. If you get one scratch on your cornea, it doesn’t make that much difference. But when you start getting multiple scratches, that’s going to obscure your vision. So between my glaucoma and my grafts drying and getting scratches, my vision just gets blurrier and blurrier and blurrier.

“Binder retired about two years ago, and I was referred to Dr. Bokosky. I had my first graft with him six months ago. Now Bokosky has something called Cyclosporine. It’s been used for tissue rejection for heart and kidney transplants, and now it’s in eyedrop form. So for me, I’m hoping this is the magical medicine that will keep my eye from rejecting or getting really dry.”

Dr. Bokosky’s confidence is reassuring to Collin. “He’s young and ambitious. At first I was a little skeptical, but I think he’s a dedicated doctor. Just from word of mouth, I think he’s a very good doctor. He’s very patient and very congenial. I’ve been around doctors all of my life. I usually read a doctor by personality — if they’re willing to help or at least willing to try something — and if they’re honest with you. He was all of those. A lot of doctors will say, ‘Just deal with it. We can’t help you,’ or whatever.

“I’ve got myself used to being a blind person. Right now, you’re just a blur to me. If you mugged me, I couldn’t describe you to the cops. I’ve got a guide dog. I learned Braille as a boy in school. I have a lot of adaptive skills. I’m very independent. Most people have had vision all of their lives, and they’ll start getting cataracts or some kind of corneal failure, and a doctor cures that, and they’re very grateful. In my life. I’ve been independent with some usable vision, then lost a lot of it. Over the years, I’ve been gaining it and losing it, and it’s very, very trying.

“I was born with eye problems. My parents noticed that I wasn’t watching toys, and when I finally got some superior medical help — someone besides an intern or resident — they found that I had a severe problem. They took me to a specialist and he operated. They [removed] my right eye, and now I have a prosthetic there — they had to save my left eye, which was better. I had congenital bilateral glaucoma. I know people with the same disease that didn’t get the same medical care I did, and they arc totally blind. So I’m very fortunate to have some vision at all.

“When my friend and I traveled across country, I could see trees and things like that, but everything was always blurry. I had to get very close to things. For example, I worked at a gas station, and the pumps weren’t automatic like they are now. As the attendant, you had to take the hose out and click up the thing and watch it spin around, and by the time I ran back, I always owed people a nickel or two, because I had trouble with the hose and stopping the pump from going. I had to get real close to the pump to read it.”

Not everyone always believes Collin is blind. “I’ve had to convince people. I mean, you can tell by looking at me that I have a visual impairment — or else I’m stoned! I’ve been stopped by policemen for looking stoned. I had long hair at the time, and I looked kind of out of it. I had to tell them I’m legally blind. Then they’d shine a light in my face, and I have photophobia from my disease, which is a sensitivity to light, and I’d pull up my arm like a vampire to protect my eyes. An extreme amount of light hurts a lot. Those days were my best vision, seeing the big ‘E’ on the chart. That was 30 years ago, and it has declined immensely.”

Collin hopes his transplant will give him back the vision he’s los.t “Dr. Bokosky says that in time, with this Cyclosporine, I’ll probably see the big ‘E’ again. If not, at least to count fingers at three or four feet.” His grin intensifies. “For me, that would be outrageous. That would mean that I could go out, recognize a tree, the difference in what kind of tree it was — like from a pine to a cypress — to see a car across the street, recognize what color it is, to recognize individuals by hair or other distinguishable features, which right now I couldn’t. I could read. This machine behind me is a reading machine. It’s called a Visual Tech. It enlarges print ten times. I could use this rather than read Braille or my voice-synthesized computer. I have large-print programs that I can’t use right now.”

A student at SDSU, Collin is two semesters away from his master’s degree in rehabilitation counseling; his bachelor’s is in social work. He believes that most people still don’t know how to help the disabled. “In our country, especially with blindness, they have not changed rehabilitation in the last 60 years. That makes me angry. You can go to any Center for the Blind and ask to be rehabilitated, and what they’ll do is, they’ll teach you cane skills, how to dress yourself, how to read Braille, how to use the computer — things that are necessary. But how to grieve? When you lose a finger, a toe, anything — as minuscule as you might think it is, you need to grieve it, because it is a loss of your body. That’s a process you have to go through, to actually admit that this is something that you needed that you’ve lost and come to grips with that. If you had a child that had died, you would mourn that But something about our bodies, we just do not mourn that. We have to. That’s a part of us that’s gone.

“We also need to learn that it’s not the end. All of my life I’ve looked for a goal. I needed something to look forward to. For me, I’ve been blind all my life, and I know what it is — to take that and help other people who are maybe losing their vision for the first time; to help them understand that it’s not the end. There is life after blindness. It takes readapting yourself. You can still enjoy things. If you want to grieve, you should get mad for a while, but we can only be mad for X amount of time, then we have to learn to get over that grief and get into something productive.”

Collin explains the various transitions necessary to make sense of life with blindness. “Daily living skills arc important, but there has to be something beyond that. Take the average male, you have children, you have a wife. You want to know how you’re going to regain your independence and regain the position that you see as important. A lot of times your psyche changes: ‘Okay, now I’m not a male any longer. I’m not a husband, I’m not a father. I’m just blind!’ Of course, there’s a lot of anger and frustration, but you need to know that someday you can regain your position as a husband and a father. At the time of your trauma, or maybe even a year after your trauma, you’re still not convinced of that, but somewhere you have to be given the hope that it can be regained. It takes re-adaptations, like maybe putting bells on your children’s feet so you would know where they were. To learn how to change a diaper. After you get comfortable taking care of your children, it’s not a scary thing anymore — it’s ‘Hey, I can do this. No problem.' "

Although he has no children of his own, Collin has been married to his second wife, Debbie, for eight years. “She’s from New York, too, and we met here in San Diego. We met at the Center for the Blind Recreation Center on Upas. We knew each other about two and a half years before we got married. And in public housing, where we live, you can’t shack up. I would have just had her shack up with me” — he grins again — “but we couldn’t legally do it!” Collin also has two older sisters, but he’s not close to either of them. “My parents were divorced, and me being a sick child, they think that I separated the family. I’m convinced now that I wasn’t the primary problem, but I didn’t help!

“It’s amazing that I’ve even survived. I really got screwed up. I went to college when I was 18, during the heyday of rehabilitation. I could go to college and get a running account at the bookstore; I could get free room and board — they even gave me money, and in those days, I didn’t need that money to get drunk or use drugs! It was my downfall. That was at Dominican College in Blouvelt, New York. In those days, if you were blind, you were told what you were going to do as a profession. There were limited occupations that they wanted the blind to do. You could work as a vendor at a blind concession stand, teach the blind, be a medical transcriptionist, or work in data entry. There were certain prescribed blind occupations that you had to do, and I never really wanted to do any of those. I always liked people and wanted to help people. I wanted to become a counselor years ago, and they said, ‘no.’ If you came up with another idea, they’d say, ‘Oh, that’s ridiculous. Blind people don’t do that.’ They wanted me to be a teacher. I was literally asked to leave college. That’s when my friend and I bought a car.

“Since about 1985 it’s started to change. Blind people can be more successful now. Computers have made a lot of the headway. We can communicate better, especially with the Internet. It’s still not perfect.”

Collin comments on both the sighted and the blind person’s preconceived notions. “I think a lot of blind people feel they have to validate their lives or prove to others that they are somebody — that you can financially take care of yourself, not be on Social Security Insurance (SSI), that you can dress yourself. People make comments; they’re surprised that my clothes match. They’re not interested in my intelligence or my independence and experience as a counselor, but that I’m dressed. Or my guide dog — everybody’s interested in my guide dog. My guide dog is a tool, not a pet. Yet people will recognize my dog before they recognize me, they’ll remember my dog’s name, but not my name.”

Collin sees his contribution to rehabilitation as bringing a sense of reality to clients. “I always tell this story when I lecture. If I’m on a street corner with my dog, and it’s raining hard, and my hair’s wet, and my dog’s wet. I’m on Genesee and Linda Vista, and it’s a deserted zone. My hair’s in my face and my clothes are soaked, and you’re driving by in your car. I hear the music, I smell the cigarette smoke, and I’m waiting for the bus while you’re waiting for the light. I have the right to give you the finger! I have the right to feel sorry for myself! I’m freakin’ cold! Every time my dog shakes, he shakes more water on me! Somebody drives by and splashes me! You don’t think I have the right to feel sorry for myself? I called Debbie up one time and said,” Collin breaks into a crying voice, “ ‘I’m coming home! I can’t stand this shit no more!' " He laughs. “I just came home. I was supposed to go somewhere for a class. Instead, I came back, soiled, stained, my hair in my face, my dog looked like a wet rug that stinks. I wanna walk in and feel like a professional person? I just said, ‘Screw it. I’m goin’ home!’ But the point is, once I took a shower and talked to Debbie about it, watched a little TV, I felt okay. But for that moment, I was depressed as hell. I didn’t like being blind. It sucked!” He laughs again. “How come I can’t just run from here to the driveway, get in my car, and take off, go do my thing and come back? When I train a client, I try to let them know that [those kinds of thoughts are] okay.

“I want to guide people towards their dreams and their desires. I want them to know that they still can be a parent, a person, whatever it is they want to be. You can still do something with your life. Whatever you did before, you can continue it. You might not be able to do it the same, but you can still enjoy it, regardless of your disability.”

Five months after his transplant, Collin is seeing again. “I can identify large objects, like buildings and furniture, and I can see the contrast between the sidewalk and grass. I can go to the store and see the name ‘Cheerios’ on the box! I feel it’s been successful, except that I have what’s called Stevens-Johnson syndrome, which is like a jelly that grows over the cornea, and it keeps getting abrasions. Right now, they have a plastic lens in my eye, and we’re going to go with that until May, then they’ll — I’m not 100 percent sure about this — put what’s called an ‘amniotic membrane’ over my eye.”

Enjoying a new level of independence, Collin and his wife recently went to the San Diego Zoo for the first time. “I couldn’t see the animals, per se, but it was a kick to see the greenery and to be there. I know that someday I’m going to be totally blind, but I accept that. What else can you do? You have to play the cards you’ve been dealt.”