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.
Charlene, a cornea transplant recipient from De Soto, KS, calls her experience with transplantation a “journey.” With her sight diminishing, she worried about her position as a third grade teacher in a parochial grade school. “Teaching is what I have done,” she said, “and it’s a lot of my identity.” Without the ability to see, however, she lost her capacity to teach, her self-reliance, and her ability to focus on the important things in life. “My whole life became about taking eye drops and treating the disease,” she said.
In January 2012, Charlene began to experience irritation in her left eye. Soon she was seeing her optometrist every two weeks to treat the infection that had developed. The cause of the infection was a combination of irritation to her eye from contact lens use and the Acanthamoeba, a microscopic single-celled organism common in water and soil. “Rinsing my contact with my tap water and then putting the contact in trapped the amoeba,” she said. According to the Centers for Disease Control and Prevention, most people are exposed to the amoeba in their lifetime, but unfortunately, Charlene is one of the few people who have contracted Acanthamoeba keratitis from exposure. In mid-March the optometrist referred her to an ophthalmologist for advanced treatment, but the infection continued to worsen. Charlene recalls her last good day of sight because it was Good Friday. Over Easter weekend, her eyesight diminished while the pain increased. On Tuesday she was referred to a cornea specialist, and finally she was referred to Dr. Bishara of University of Kansas Hospital for a cornea transplant consultation. Dr. Bishara informed Charlene that she was to embark on a journey, and after exhausting all other possible treatments, they scheduled her for corneal transplant surgery on June 15.
The months leading up to the surgery were difficult. “The pain was so excruciating,” Charlene recalled. “I had to draw the drapes in my home, and even the television provided too much light. I wore sunglasses everywhere.” Her friends, sons, and daughters-in-law had to take her to her medical appointments, so thankfully she had such a strong support system. Even the 60 children she taught and her fellow teachers came to visit her. But in the end, her surgeon was correct: it was Charlene’s journey, her path through the darkness. “These people could have sympathy for me,” she said, “but they couldn’t know what I was experiencing.” Without her vision, she would lose her ability to teach, which had become integral to both her life and her livelihood. It was in this time, uncertain of the future of her sight, she began to ask herself questions such as, “If I can’t see, who am I?”
On the day of the operation, Dr. Bishara explained the corneal transplant procedure to Charlene and then talked her family through the logistics. “Dr. Bishara is personable and brilliant,” Charlene said of her surgeon. “She’s one of the best friends I’ll have in my lifetime.” The reason for Charlene’s exuberance about her surgeon is clear: Charlene’s eyesight returned very slowly for a couple weeks, but by the middle of July, she had recovered enough that she was able to return to her school to prepare her classroom for the upcoming school year.
About her journey these days, Charlene says, “Don’t let me waste my days. I feel like I’ve been truly given a gift.” Charlene had never encountered donation before her transplant, but now she wants to be a donor, she’s written to her donor family, and she teaches others about her experience with donation. She told one of her sons about her wish to be a donor, and he joked that his mother was too old to donate, but Charlene knows that isn’t the case. “It is such a simple thing to say that I want to give something back to someone else,” she said. In fact, anyone who wants to donate can sign up for the donor registry, regardless of health, age, or any other characteristic.
What’s more, most people can become eye donors. Age, race, gender, and blood type don’t affect a person’s ability to give the gift of sight. Neither will a diagnosis of cancer, diabetes, or poor vision. In short, people who sign up for the donor registry are simply stating that they would like to be a donor if it is medically possible at the time of passing. But perhaps Charlene explains this best: “No matter our age or our health, there are often things we can leave behind that other people will be able to utilize. The gift of our life is something we can share with others.”
Join Charlene in pledging to be an eye, organ and tissue donor on the Donor Registry so people like Charlene will be able to receive the gift of sight when they so desperately need it. To learn more about eye donation, please visit the About Cornea Donation section of our website.
For years, Judy of Manhattan, Kan. struggled with vision loss due to Fuchs’ dystrophy, a degenerative disease of the cornea. As the condition progressed, she had difficulties reading a phone book or seeing the license plate on the car in front of her.
By the time her eyesight declined to 20/70, her surgeon encouraged her to proceed with a cornea transplant using donated tissue to save her vision, but she was still hesitant.However, after talking with a family friend whose son had been an organ donor, she began to reconsider.
“In visiting with his mother several times, she talked about how good it made her feel to know others had been helped even in the time of their loss.”
Judy decided to accept the gifts of two generous donor families who made the heartfelt decision to let their loved ones live on through others. In June 2011, she underwent a cornea transplant on her left eye and then again in March 2012 on her right eye. Today, Judy is seeing 20/25 with or without glasses.
“In a sense I didn’t realize how bad my sight had been until after my transplants. Some days my sight is so good, it’s unbelievable. I still have a bit of astigmatism, but I can see my grandson playing ball. I can follow college basketball and helicopters flew over my home the other day, and for the first time, I could really see them in detail.”
Judy’s transplants have allowed her to continue working part-time as a clerical assistant at a church and enjoying her favorite hobbies, most significantly her role as director of Toys for Manhattan. Each year, this community-wide volunteer program collects toys to distribute to emergency shelters, crisis centers, and individual families so that everyone can have a happy holiday season. In fact, under Judy’s direction, more than 500 families were helped this past year.
Because of her donor families’ generous decisions, Judy is able to continue paying it forward in her community. “They’ve very precious people. I know it had to have been hard for them, but to make that commitment to carry on is miraculous.”
For more details on how you can help give the gift of sight in Kansas, visit www.donatelifekansas.com.
Since receiving her cornea transplant, Elaine was able to return to the activities she loves, free from pain caused by Fuchs’ dystrophy.
Losing your eyesight is incredibly devastating on its own. But to suffer from unbearable pain while your vision quickly vanishes is something many of us can’t imagine.
Since she was a child, Elaine of East Alton, Ill. had problems with her eyesight. She underwent two surgeries in childhood to correct her strabismus, a muscle disorder that caused her right eye to misalign, and as she grew older, began suffering from glaucoma and dry eye. Yet nothing couldhave prepared her for her battle with Fuchs’ dystrophy, a genetic disease which wouldquickly destroy her cornea.
In July 2011, after Elaine began noticing her eyes were watering uncontrollably, her doctor upped her dry eye medication. However, the condition became excruciating – Elaine’s eye was red and swollen, causing her incredible discomfort and affecting her ability to work. Three weeks later, she was diagnosed with Fuchs’ dystrophy, and four months later, learned that ¾ of her right cornea was destroyed. An immediate cornea transplant would be the only way to save her vision.
Unfortunately, another eye problem would step in the way of her recovery – Elaine underwent a cataracts surgery in January 2012. The 30 days between her cataracts surgery and her transplant were filled with fear as the medicine did little to relieve her agony. “When medicine controlled the pain, that was one thing. I thought, ‘I can do this.’ But when it stopped working, the pain was indescribable. The watering made my dry eye worse, which was a constant cycle. In the end, it was unbearable.”
The Fuchs’ eventually impacted all areas of her life – the eye disease held her back from doing the things she loved. “Without a transplant, I knew I couldn’t keep working. I basically kept myself in the house, and I gained weight because I was so miserable. I’m used to going out, seeing my friends, having people over for dinner – but the condition got to be too painful. There was nothing the doctors could do.”
Finally, seven months after her diagnosis, Elaine underwent a much-anticipated transplant on her right eye, using tissue donated by a generous donor family.
Soon after surgery, her pain disappeared and her sight began to reappear. Someone who could see figures with her right eye, but not well enough to read – even with glasses – could now read the third line on an eye chart with her glasses.
Elaine no longer has to fear having to quit her job as an inpatient coder for a large St. Louis hospital because of going blind in both eyes at the same time. Now, when her left eye progresses to the end stage of the disease, she will have her right eye to see with. Because her transplant eliminated her intense pain, Elaine is also back to the hobbies she loves, including playing board games, listening to music, dancing, exercising, and playing with her cats.
For Elaine, her donor family has improved her life dramatically and reaffirmed her lifelong decision to become an organ donor herself. “It’s so hard to describe in words, but my donor family has given me my life back. I can work, I can enjoy life, I can go out again. I can have my right eye open and not be in severe pain. Before the surgery, I would have taken blindness over the pain. Now I’ve got everything – I’ve got an eye I can see out of, and I don’t have the pain. I can’t thank them enough.”
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.
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.”
Charlene, a cornea transplant recipient from De Soto, KS, calls her experience with transplantation a “journey.” With her sight diminishing, she worried about her position as a third grade teacher in a parochial grade school. “Teaching is what I have done,” she said, “and it’s a lot of my identity.” Without the ability to see, however, she lost her capacity to teach, her self-reliance, and her ability to focus on the important things in life. “My whole life became about taking eye drops and treating the disease,” she said.
For years, Judy of Manhattan, Kan. struggled with vision loss due to Fuchs’ dystrophy, a degenerative disease of the cornea. As the condition progressed, she had difficulties reading a phone book or seeing the license plate on the car in front of her.