Patti was losing her vision to Fuchs’ dystrophy until she received two cornea transplants that saved her sight.
“Colors are brighter, more vibrant,” said Patti, a nurse from Overland Park, Kansas, about her vision after cornea transplantation. “The first thing I noticed was the colors. Everything was just so much brighter, the beautiful colors. Before I was seeing them, but everything looks better after the surgery.”
Before her transplants, Patti suffered from cataracts and Fuchs’ dystrophy, a hereditary disease in which corneal cells die, causing vision to decrease as fluid builds up in the cornea. Eventually, her vision was so bad she couldn’t see street signs, and her eye doctor treated her for cataracts in 2007. She received intraocular lens implants, which improved her vision somewhat, but it didn’t solve the problem. Patti had not heard of Fuchs’ dystrophy until her son was diagnosed with it during grand rounds at the University of Kansas Medical Center. “At this point, the whole family has been diagnosed with Fuchs’ except my two older sisters and my brother,” said Patti. The disease runs in families, affecting approximately 4 percent of people over age 40, according to the National Institutes of Health. Patti’s nephew has received corneal transplants to restore his vision, and her son will likely undergo transplantation as well to restore his vision.
Patti was able to make do with her reduced vision for many years, but in 2012, she was in a car accident caused by a drunk driver, sustaining injuries to her face and head. Upon seeing her swollen face, Patti visited her eye doctor for an examination to make sure the accident had not injured her eyes, too. It was during this check-up that he advised Patti to undergo transplantation to restore her sight. She received a corneal transplant in each of her eyes in September and November of 2012. “I wasn’t feeling very scared,” Patti said of the procedure. “As a nurse, I kind of knew what would happen. You’re awake, but you feel secure. The procedure was pretty painless.” Patti was eligible to receive donor tissue processed for DSAEK, which helps reduce the recovery period by being less invasive. “You don’t have any vision for three days after the transplant,” she reported. “But I had friends who know I like to read—they came over and read to me. They gave me books on tape to listen to also.”
The surgeries were successful. Now, with clear vision, Patti is better able to work, drive safely, and complete the tasks of everyday life. “Night driving is still kind of an issue with depth perception, but I feel really lucky to have gotten these corneas so I can continue to live,” she said. “I live by myself so if I lost my eyes, I’d be a mess. How would I buy groceries or pay my bills? You start thinking about all of these things, and so if you can help somebody else, you should.” Patti reports that she is registered to be an organ, eye, and tissue donor. “I encourage people to sign up for the registry,” she said. “You can change someone’s life.”
Patti’s life has changed for the better. She’s back to enjoying her favorite pastimes. “I’m much better at tennis than I used to be,” she reported. “I’ve noticed that. I enjoy the outdoors – tennis, bicycling—and I’m in a singles group. I also enjoy reading, TV, movies—all things that require sight, actually.
You can changes lives by joining the millions of Americans like Patti who have declared their choice to be donors. Visit the DonateLifeAmericawebsite or a local Department of Motor Vehicles office to register.
Fred, from Springfield, Missouri, received a sight-saving corneal transplant in 1970, long before corneal transplant surgery became the outpatient procedure it is today. His story is a touching reminder of just how precious the gift of sight can be.
Fred, from Springfield, Missouri, received a corneal transplant in November of 1970 before corneal donation and transplantation were as well-established as they are now. Saving Sight (known then as the Missouri
Lions Eye Bank) and the Eye Bank Association of America were only 10 and 9 years old, respectively, and most organ procurement organizations did not yet exist. Instead, transplant surgeons sourced their corneal tissue through small, often hospital operated donor programs. Recipients frequently rejected the transplants within a few years, meaning they would usually have to go through an arduous surgery and recovery process multiple times to regain their sight.
Born with 20/400 eyesight in his left eye, Fred was legally blind in one eye (he likens it to putting Vaseline on the lenses of a pair of glasses). In fourth grade, Fred’s seeing right eye was poked with a stick, which later caused a growth to develop on his cornea, and his vision in that eye eventually progressed to blindness, too. The doctor he had been seeing referred him to a specialist in St. Louis. After Dr. Kolker, an ophthalmologist at Washington University, had exhausted all other treatments and Fred had been blind for two years of junior high, he recommended that the 14-year-old undergo a corneal transplant. Transplants only had a two-year expectancy at the time before the body would reject them, but Fred, Dr. Kolker, and his family decided that was better than the alternative.
Fred and his parents were put on call until several months later when the family of a 31-year-old in the St. Louis area who died in a car accident made the heroic choice to donate his corneas. “I was in school at a pep rally when Dr. Kolker called,” Fred remembered, “and Mom and Dad picked me up. We were in St. Louis that evening where I was admitted to McMillan Hospital. And the next morning they did the transplant bright and early.” Fred’s recovery was a six-month process, partly because of the fear of rejection and partly because he received two dozen hand-sewn stitches to replace his cornea. After the surgery, both of his eyes were bandaged to keep them immobile. “I could shower and use the restroom, but otherwise I had to stand straight up or lay on my back for two weeks,” he reported. Afterward, they took the bandage off his left eye, enabling him to see somewhat, but finally, months later, the bandage was removed from Fred’s right eye. “I remember taking the bandage off and having to wear sunglasses for a while,” Fred recalled. “I hadn’t seen the sun in a long time, so my eye was very sensitive.”
But Fred’s recovery was not complete. “Almost 2 years to the day after my transplant, my eye started getting red and watering,” he said. “So they hospitalized and isolated me. They used a drug to weaken my immune system and then built my body back up. I was in isolation for two weeks until my body accepted the cornea.” The intervention worked, though, and he hasn’t had any more problems, to this day.
The corneal transplant recipients that Saving Sight serves today have a very different experience. Thanks to generous eye donors and a strong eye banking infrastructure across the country, a surgery can be scheduled within a few weeks or months, depending on the surgeon’s schedule. And the operation is an outpatient procedure due to advances in surgical and processing techniques. The recipient must remain relatively immobile for a few days, but vision typically comes back within a couple of weeks.
Fred had to give up contact sports and playing the trumpet, the latter for fear that the pressure in his head would damage the transplant, but otherwise, he was able to make a full recovery and do the things he loves. He even got his driver’s license when he turned 16. But he still keeps a set of Braille playing cards he received during his time of blindness. “They remind me where I come from back in those days,” he said. Today, Fred is a member of several service organizations and supports donation in his community. “My wife and I have been on the donor list since 1980,” he said. “When you get your new license, you need to have that donor symbol on there.”
In the last 43 years since Fred’s transplant, Saving Sight and the transplant surgeons it partners with have made considerable advancements, the result of which is recipients regaining their sight quickly and with less pain. And more people than ever are saying yes to donation and joining the eye, organ, and tissue donor registry. To join the millions of Americans like Fred who have declared their choice to be donors, visit the Donate Life America website or a local Department of Motor Vehicles office.
Cathy from Bethalto, Illinois suffers from keratoconus, but thanks s to a cornea transplant, her vision and her life have improved.
Cathy from Bethalto, Illinois didn’t know she was suffering from a serious eye disease until she sought a consultation for Lasik surgery. The surgeon explained that the reason her contacts no longer fit and why she wasn’t a candidate for Lasik was because the shape of her cornea was slowly changing due to keratoconus. According to the National Keratoconus Foundation, the disease “is a non-inflammatory eye condition in which the normally round dome shaped cornea progressively thins, causing a cone-like bulge to develop.” Keratoconus significantly impairs vision for about 1 in every 2,000 people, but its cause remains unknown. Cathy began using rigid, gas permeable contact lenses that helped give her eyes a smooth, rounded shape, resulting in better vision. But as the keratoconus progressed, her doctor eventually recommended corneal transplantation.
“I was almost blind in my right eye,” Cathy said. “I could see but not focus, so I couldn’t make out faces until they were within a foot or two of me.” She received a transplant on her right eye in St. Louis and experienced no complications with the surgery. “I still wear gas-permeated contacts because my eye’s still slightly three misshapen, but my vision is clear and close to 20/20 in the right eye.” Cathy is currently waiting to pursue treatment on her left eye. A promising experimental treatment called corneal cross-linking, which boosts the deteriorated collagen that causes the eye’s misshapenness, may become a viable procedure, but it hasn’t completed FDA clinical trials. According to the Mayo Clinic, corneal transplantation remains a very successful treatment for people experiencing corneal scarring or extreme thinning of the cornea.
For now, though, Cathy is able to see very well with her contacts and new cornea. “I consider myself lucky because my cornea transplant was a very easy process,” Cathy said. “It was nerve-wracking, but the recovery time was easy and I had no pain.” As a working mother of three daughters, she became acutely aware of just how important her sight was to her family life. “You take sight for granted,” she added. “My kids would bring me papers for school, but I couldn’t help them without contacts in. It made me very confused. You’re aware of things around you, but everything’s such a blur.” What’s more, Cathy’s experience has made her better able to appreciate her grandmother who was blind in her later years. “She would get easily frustrated, and I felt that way a lot of times,” Cathy reported. “The transplant has helped because I don’t feel that way as much anymore.”
“I feel very blessed,” said Cathy. “It’s ironic because I’m registered as an organ donor, but you don’t think about eyes or corneas. A small part of someone’s body has made a big impact on me.” Thanks to her donor and donor family, Cathy is more able to engage with her life and her children. “My oldest daughter is a senior this year,” she said, “so I’m now getting to experience her life alongside her while she experiences it.”
Betty, a 77-year-old retired businesswoman from St. Louis, suffered from a series of genetic eye problems for the last 40 years. She, her mother, her daughter, and her grandson all experienced early onset of cataracts in their mid- to late-thirties. Betty underwent cataract surgery in both eyes at age 37 and wore “coke bottle” glasses and contact lenses for 13 years. In 1986, after numerous eye infections, she received secondary lens implants for which she had not qualified after cataract surgery due to her young age and the unknown long-term effects of the new lens. Finally, after years of complications, she could see well again.
For the next 20 years, Betty experienced good vision with few eye problems. But in 2007, another genetic problem surfaced in her left eye. “I was driving home from church and my vision suddenly seemed very blurry,” Betty recalled. “My daughter took me to the emergency room, and they ruled out any other physical problem but thought the secondary lens implant may have slipped out of place.” Betty made an appointment with Dr. Gregg Berdy, a local ophthalmologist who also serves as a medical director for Saving Sight. Dr. Berdy conducted a series of tests on Betty’s eyes and determined that she suffered from Fuchs’ dystrophy, a genetic disease that can cause corneal swelling and blisters, severe visual impairment, and pain. “My vision was getting steadily worse, which hampered my life. I couldn’t drive at night or in the rain and couldn’t read or be on the computer very long,” Betty said. In 2009, the pain had gotten so bad Dr. Berdy completed two laser surgeries on Betty’s corneas to smooth them out and remove scarring. “There were days I would sit in my house with no lights, wearing dark glasses, and could not go outside,” Betty said. “It was pretty miserable.”
Thankfully, Betty qualified for a corneal transplant in 2011. Dr. Berdy conducted a DSAEK procedure, which involves replacing just the inner, endothelial cells of the cornea instead of the entire thickness of the cornea. This surgical procedure was developed to reduce patient recovery times and improve the regained vision. After the transplant, Betty’s vision slowly improved, and her latest vision test revealed that she has 20/30 vision with corrected lenses and even has 20/40 without lenses. “I’m very, very happy with the results,” Betty said. “It’s amazing – a miracle.”
Today, Betty can read, work on her computer, and drive without restriction. In looking back on her pre-transplant eye problems, she noted, “It affects your life in so many ways. I couldn’t even read the thermostat or the oven controls on the stove. I had a lot of magnifying glasses around the house in different rooms.” Betty is grateful to Dr. Berdy and the donor who generously gave her the cornea she needed to live her life unencumbered by pain and vision loss. “I’m very happy I got the transplant, and I’m very grateful to the donor family,” she said. “It’s absolutely wonderful that people are donating corneas and restoring vision to others. Even for someone my age, it’s a little scary to go through, but it has much improved my quality of life and allowed me to continue to live my active life. It is a rare gift.”
You can join the eye, organ, and tissue donor registry today by visiting the Donate Life America website or your local Department of Motor Vehicles office.
Glaucoma is an eye disease most commonly associated with the elderly. High intraocular pressure, often occurring with advanced age, causes damage to the optic nerve and slowly limits peripheral vision. But the reality is that glaucoma affects people of all ages. In the case of Gentry from Raymore, MO, the disease was congenital and accompanied by both Peters’ anomaly and a protruding left cornea, all of which caused her to be born completely blind. That Gentry is a happy two-year-old today with ever-increasing vision is an achievement of modern ocular medicine and her parents’ enduring support. As Becky, Gentry’s mother, put it, “It’s amazing where we started at compared to what Gentry’s able to do now.”
Gentry’s first eye surgery took place on her second day of life, and she received her first cornea transplant at one month old in order to reconstruct her left eye and correct the Peters’ anomaly, a rare developmental disorder that causes corneal opacity. The transplant was a success, correcting the cloudiness and enabling both eyes to move together, but the medical team was also working to reduce the heightened eye pressure caused by glaucoma. After six months, Gentry’s intraocular pressure spiked, necessitating the implantation of an Ahmed valve and the transplantation of a second cornea. This transplant, too, could not sustain her condition, and four months later she received a third corneal transplant at the age of one.
“The treatments took a huge commitment from her doctors,” Becky said of her daughter’s medical team, which consisted of ophthalmologists Dr. Erin Stahl of Children’s Mercy Hospital in Kansas City and Dr. John Sutphin of University of Kansas Hospital. “Her case was so rare, they had to consult each other.” Finally, in August 2012, Gentry received a Boston Keratoprosthesis implant (or “Boston KPro” for short) in her left eye. The Boston KPro is an artificial cornea under development since 1960 that is now the most commonly used artificial cornea in the U.S. and the world. When standard corneal transplantation fails to return sight, the Boston KPro can be inserted into a donated human corneal graft and then sutured into the eye like a standard transplant. Gentry numbers among the more than 7,000 people who have received the implant since 2000, though the procedure remains rare, having been used in less than 1 percent of cornea transplants in 2012.
To date, Gentry has undergone twenty eye surgeries, including three traditional corneal transplants, two Ahmed valve implants, and the Boston KPro transplant. While her daughter has not attained full vision in the course of these complex medical interventions, Becky describes Gentry’s vision positively. “She can see fairly well out of her right eye. She gets around fine and can see things around her,” she said. “We’re not sure about her depth perception, and she has light-sensitive vision, so she wears sunglasses outside. But we know she has light reception in her left eye. She’s just now at the point that she can develop vision in the left eye.”
In order to express her gratitude, Becky has written to the families whose loved ones donated the gift of sight to Gentry. “My daughter couldn’t see if it weren’t for donation and the generosity of people and families who agree to donation,” she said. Though she had not encountered donation or transplantation before her daughter’s birth, Becky knows how important the gift of sight is to people of all ages. “There are babies and young children who have eye conditions. They have the opportunity to be able to see if given that gift at a young age.” Because generous donors and donor families said yes to donation, Gentry has the opportunity for a life she might not otherwise have had. “She has the chance to grow up like everyone else,” Becky said. “She doesn’t have perfect vision, but it’s functional. She’ll be able to read and play like every other child.”
Gentry’s visual development will be gradual and uncertain and, undoubtedly, monitored closely by her ophthalmologists. But thanks to the generosity of her donors and their families, the skill of her medical team, and the patience and support of her family, today Gentry gets to be a very active and intelligent two year-old girl who sees.
Tom, a veteran from Independence, Missouri, suffered from Fuchs’ dystrophy. Thanks to a cornea transplant, he was able to regain his vision and continue to support his family.
Tom suffers from Fuchs’ corneal dystrophy, a hereditary disease that causes fluid buildup as the cornea’s endothelial cells deteriorate, but he didn’t know that at first. “I thought I was having trouble with allergies and dry eyes – that I was getting older,” Tom said. As a veteran of the U.S. Air Force (service from Jan. 1972 to April 1984), Tom receives much of his health care from his local Veteran’s Administration hospital, and in 2011, he visited it for a routine diabetes check-up.
The nurse there asked him how he could see out of his right eye at all. When he then visited the hospital’s eye clinic, he was fortunate enough to be seen by an intern who had studied with Dr. Sutphin at University of Kansas Hospital. Because of her training, she had seen cases of Fuchs’ before and was able to refer Tom to Dr. Sutphin, who officially diagnosed Tom with Fuchs’ corneal dystrophy and prescribed a salve and eye drops to treat the blistering and pressure.
According to the Mayo Clinic, “Normally, the cells that line the back surface (endothelium) of the cornea prevent excess fluid from accumulating. This helps the cornea maintain its transparency. But with Fuchs’ dystrophy, those endothelial cells slowly deteriorate, lose function, and die. As a result, fluid builds up in the cornea. This may cause swelling, cloudy vision, pain, and loss of corneal transparency.” The irritation and watering eyes Tom experienced were not unlike problems people have with seasonal allergies, only it was more severe. But thankfully he was able to receive a diagnosis early on because in the final stages of the disease, the cornea completely deteriorates and Tom would have gone blind. As the primary earner for his family, Tom’s loss of sight would have had implications not only for himself but also for the family he supports, including his wife, his son, and his son’s family.
On Groundhog Day in 2012, Tom received a cornea transplant in his right eye at University of Kansas Hospital in Kansas City, KS. Tom reported being “in a blur” for the first several days after his surgery, but he was able to drive again the day after his one-week follow-up appointment with Dr. Sutphin. “I received a multitude of eye drops, but that has since decreased,” Tom said. “Now I take one drop every day for the rest of my life. It’s a small price to pay compared to the alternative.” Tom’s sight improved to 20/100 in the right eye (20/20 with correction), and after a subsequent cataract surgery, he can now see 20/25 in that eye – without corrective lenses.
“So far, I couldn’t be happier,” Tom said. “I’m grateful to those who made the cornea donation, and I’m thankful to the Almighty that we’re able to do [transplant surgeries] these days.” Tom will require a second cornea transplant for his left eye later this year to completely repair the damage caused by Fuchs’ dystrophy, and he will need further treatments for cataracts as well. But in the end, Tom will be able to complete his work with the federal government to support himself and his family in the remaining years until his retirement.
Tom has been registered to be a donor his entire adult life. You can register to be an eye, organ, and tissue donor through your state’s registry by visiting http://donatelife.net or your local Department of Motor Vehicles office.
Glaucoma is an eye disease most commonly associated with the elderly. High intraocular pressure, often occurring with advanced age, causes damage to the optic nerve and slowly limits peripheral vision. But the reality is that glaucoma affects people of all ages. In the case of Gentry from Raymore, MO, the disease was congenital and accompanied by both Peters’ anomaly and a protruding left cornea, all of which caused her to be born completely blind. That Gentry is a happy two-year-old today with ever-increasing vision is an achievement of modern ocular medicine and her parents’ enduring support. As Becky, Gentry’s mother, put it, “It’s amazing where we started at compared to what Gentry’s able to do now.”