Cheryl, from Frankfort, MI, received two corneal grafts to treat Fuchs’ dystrophy. Without generous cornea donors, she wouldn’t have been able to keep working and enjoying her active lifestyle.
Cheryl is an active 64-year-old from Frankfort, Michigan who grew up on a farm, has been married for 44 years, and has one daughter and three grandchildren. She’s proud of her degree from University of Michigan, and since 1970 she has worked off and on for the Social Security Administration where she helps blind, disabled, and older people file their claims. For 30 years, though, Cheryl has experienced a slow decline in her vision. Eventually, her eyesight reached the point where it could only be corrected to 20/70 with glasses—worse than the legal limit to drive. “I was facing blindness, and most of the things I like to do – read, drive, be outdoors, photography, editing photos – require sight,” she said. Had it not been for corneal transplantation, Cheryl’s vision loss would have prevented her from working and enjoying her active lifestyle.
Cheryl’s mother suffered vision loss due to Fuchs’ dystrophy, a hereditary disease that causes the corneas to cloud over and blister. Unfortunately, Cheryl inherited this disease, too. “In the last two to three years I really noticed my vision loss,” she said. “When you lose something so subtly over a long period of time, you don’t realize what’s going on.” More recently, Cheryl would wake up in the morning with fluid covering her corneas. “When I looked in the mirror, it was clouded over like having the shower on,” she said. “It would clear in an hour or two, but I had to use a hair dryer and drops to get the fluid out. Nothing was sharp, though, and lots of light was irritating.”
In addition to the pain, Fuchs’ dystrophy jeopardized Cheryl’s ability to commute to her job. “I work in Traverse City, about 40 miles one way,” she said. Cheryl would take side roads to avoid higher traffic routes. And when she arrived at work, her vision problems interfered with her job. “I work on a computer screen, and that was getting difficult,” she said.
Last year, after spraining her ankle, Cheryl had a poor response to pain medication that caused the Fuchs’ dystrophy to flare up, significantly reducing her vision in one eye. That was when her ophthalmologist, Dr. Arkin of Traverse City, finally advised a transplant. “We scheduled the surgery for eight weeks later,” Cheryl recalled. Dr. Arkin performed an endothelial keratoplasty, which means only the damaged part of the cornea was replaced and her post-surgery recovery was shorter. “Thankfully Saving Sight had the cornea, and I was there with the need. I got the surgery on Friday, and by Sunday I was seeing better. Two weeks later, I was seeing 20/25 in that eye. It was just really amazing.”
Saving Sight offers recipients and donor families the opportunity to correspond, so Cheryl shared her experience with her donor’s family. “I wanted to let the donor family know how thankful I was,” she said. “That was a moving experience to write a letter to the family articulating what it meant to me and that I know what it meant to them. I am so thankful that people are willing to donate.”
Through blindness, Cheryl also learned more about the people she helps at work. “It gives me insight more so than ever,” she said. “It makes me a better person, knowing what someone goes through when they lose their ability to function.”
Six months later, Cheryl received a transplant on her other eye to replace that cornea, too. “Dr. Arkin did an incredible job with my eyes,” she said. “That transplant healed even more quickly because the eye wasn’t as bad. I feel I was very lucky when everything progressed. All in all, it’s been a positive experience.”
As part of her active lifestyle, Cheryl is planning two hiking trips on South Manitou Island, an island in the northern part of Lake Michigan. “I’m going to take a ferry out to the island and backpack for a couple of days, hauling all my stuff by myself,” she said. “Before surgery, that wouldn’t have been doable because I wouldn’t have felt my sight was good enough to go on my own. Now I can do that, so the transplant has really given me my life back.”
To join the millions of Americans like Cheryl who signed up for the donor registry, register onlineat DonateLifeAmerica or at your local Department of Motor Vehicles office. And be sure to share your decision with your family and friends.
Chris shares his experience as a corneal transplant recipient. Before the surgery, he was losing his sight to keratoconus.
Eye donors change lives. You can join the donor registry online at donatelife.net or at your local Department of Motor Vehicles office. And be sure to speak with your family about your choice to donate.
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The first time I went fly fishing after my surgery, it was amazing. There was so much detail.
Charlotte, right, received a cornea transplant with tissue donated by Cody, son of Bonnie (left). After years of correspondence, Charlotte and Bonnie decided to meet each other.
Correspondence after donation and transplantation can be a positive part of the healing process for many people. Saving Sight offers donor families and cornea transplant recipients the opportunity to write to each other in a safe, positive environment. Acting as an intermediary, Saving Sight accepts the letters and then passes them on to the appropriate parties, which helps preserve everyone’s anonymity. Recipients and donor families alike have said that correspondence had therapeutic effects.
When Bonnie’s son, Cody, died in Divernon, Illinois after a car accident, he was able to donate skin and corneas. “Cody always wanted to be an organ donor,” she said. One of his corneas was received by Charlotte from Clinton, Missouri, who needed the transplant to treat a corneal infection that threatened to destroy her entire eye. Quite soon after her transplant surgery, Charlotte initiated the correspondence process with the help of Paul, her son who lived with her and cared for the family farm. Paul said his mother was eager to correspond with her donor’s family because she understood loss, having recently lost two grandchildren. “Because of that unselfish loved one was a donor and gave me a gift, I still have my eye,” Paul remembered Charlotte saying. “So she wanted to contact the family and thank them.”
With Paul’s help, Charlotte sent a letter to Saving Sight which was then passed on to Scarlett, Cody’s wife. “Scarlett didn’t feel like she was ready to correspond, so I asked permission to correspond instead,” said Bonnie. And with that, Bonnie and Charlotte began the process of getting to know each other. “Charlotte was very understanding that someone died to give her this cornea,” Bonnie recalled. “She was a really sweet lady.”
When people correspond for more than a year and both parties consent to communicating without anonymity, Saving Sight will connect the donor family and recipient so they can pursue contact on their own. Bonnie and Charlotte wrote several letters in that first year and continued contact in the years that followed.
“We talked on the phone sometimes, at birthdays and at Christmas,” Bonnie said. Eventually, Bonnie offered to visit Charlotte at her home in Clinton. “My daughter Tara and I had discussed from the time I first started corresponding with Charlotte how we would love to meet her, although we knew it would be difficult on us. However, Tara was unable to come with me so I drove there on June 16, 2012, which was Cody and Scarlett’s wedding anniversary,” Bonnie said. “I stayed at Charlotte’s house for three or four hours and met Paul. We had a wonderful visit. It was nice to have a part of Cody with her, to know that he lived on. Cody had big blue beautiful eyes, and I just loved the fact that I got to meet her and look in her eyes.” Paul said the feeling was mutual: “It meant a lot to Mom to get to finally meet the person behind the voice on the phone, as Mom was unable to travel long trips.”
Charlotte, a cornea recipient, corresponded with Bonnie, the mother of a donor.
Despite the happiness of meeting Charlotte face to face, Bonnie also found the experience to be emotionally trying. “I held it all together until I drove out of her driveway, and then I cried all the way home,” Bonnie said. “It was Father’s Day the next day and just meeting her – she was a wonderful lady. She was very appreciative of how Cody had died but was willing to give his cornea. She never took it for granted. That’s why she wrote the letter – she wanted to know about the person who donated and his family.”
Charlotte’s daughter made quilted table cloths, and she gave one to Bonnie as a keepsake from their visit. “I cherish that,” Bonnie said. “Charlotte had health issues, and I think she knew we wouldn’t see each other again.” In April of 2013, Charlotte passed away at the age of 91, and thanks to Paul’s care, she was able to remain on the farm until a few days before her death.
Paul described his mother as having “an abundance of love that she shared with her eight children and many outside her family” and that she “was proud of Bonnie’s friendship.” Bonnie, too, looks back fondly on the trip: “I felt so fortunate to have met Charlotte. It’s hard to explain what it’s like to meet someone who has your son’s cornea. But I can’t say enough how blessed I felt by it all.”
Brad, from the Springfield, IL area, lost his sight to keratoconus but was able to regain his vision through corneal transplantation.
Brad from Mason City, Illinois describes himself as a computer guy. He worked on computers, worked in a computer store, and played computer games for much of his life. About seven years ago, though, he noticed that he was having trouble seeing the computer screens. “I thought I needed new glasses so I went to my optometrist’s office, and they referred me to another doctor who diagnosed me with keratoconus,” Brad said. “I told him I had trouble with my new glasses, and the doctor said it’s because you can’t correct keratoconus very well.”
Keratoconus significantly impairs vision for about 1 in 2,000 people, but its cause remains unknown. 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.” Brad described it like this: “Imagine the cornea like a soccer ball—it’s rounded. But for somebody with progressed keratoconus, the rounded part flattens out like the end of a football, and as it progresses, the cornea gets thinner. And with it being pulled and thinning, some of the tissue scars.”
As a result, Brad suffered from severe astigmatism. To help correct his vision, he received rigid, gas-permeable contact lenses that helped shape the eye, but this correction could not keep up with the ever-changing shape of Brad’s corneas. Brad said that eventually he couldn’t tolerate the contacts anymore. “When the cornea distorts, it gets harder and harder to get a comfortable fit,” he recalled. “At my worst point, I could only wear contacts for an hour a day. Some days were better, but then it would hurt so much I couldn’t wear them for days after.”
After losing his job in a layoff and reaching a point where the contacts were no longer a viable solution to his vision problems, Brad moved from Springfield, IL back to his parents’ house and took steps to receive corneal transplant surgery. Uninsured after the layoff and no longer able to work or drive due to his vision, Brad applied for disability benefits through the Social Security Administration, which included the Medicare coverage he would need to receive a transplant. Finally in 2011, after six months of waiting, Brad received a full-thickness corneal transplant on his left eye from Dr. Yang at St. John’s Hospital. “The staff was amazing,” Brad said. “The surgery, considering how complicated it is, goes fairly quickly. It went really well. Within 6 months, I started showing really great improvements. Toward a year, they were able to come up with a lens correction to 20/25 in that eye.” In December 2012, Brad received a transplant in his right eye. The recovery has not been as successful as with the left eye, but he still has stitches to be removed and has appointments with Dr. Yang and his optometrist to see what else can be done to improve his vision.
Meanwhile, Brad keeps an optimistic outlook. He’s able to drive again, and he reads avidly, which he’d previously given up because it hurt too much. He even repaired the hardware on his smartphone recently, fixing a broken power switch. “It would have been impossible to do that before,” he said. “It attests to how far I’ve come.” And perhaps most importantly, Brad has used this time to improve his health in other ways. “In the last three to four years, as I was losing my sight, I started working on my health and lost 180 pounds,” he said. “I’m healthier than I have been in 15 years. I go to the gym five days a week, and my cousin trains me. I’ve taken the opportunity to improve myself all around.” With his vision and health improved, Brad is now looking for work again. “I want to get back into working in computers, something IT-related that’s hands on,” he said.
March is National Eye Donor Month, a time to honor eye donors and their families, and Brad encourages people to learn about the donor registry and sign up. “I believe in donation and always have. My mom’s a nurse and that’s something we always discussed up front,” he said. “There’s all kinds of tissues that can be used for transplants, like eyes, skin, and bone. That was the big thing you don’t really think about, but going through this experience has taught me that – donation is not always about saving someone’s life but also about improving someone’s life.”
Laren from Missouri received a cornea transplant so he could keep flying planes.
Pilots undergo regular medical exams to retain their eligibility to fly, and a major component of that exam is the vision test. They must be able to see 20/20 with correction. Laren from Loose Creek, Missouri was told by his optometrist that he would someday need corneal transplants to repair his eyesight, so when Laren could no longer pass his pilot medical certification, he knew it was time to undergo surgery. “I just couldn’t give up flying,” Laren said. “At some point, this transplant would need to be done anyway so I said yes, and I was in the surgeon’s office a week or two later to do the procedure.”
Laren is semi-retired at this point and now flies corporate jets part-time. His vision was always a problem for him – he suffers from cataracts and Fuchs’ dystrophy – but he’d always been able to correct his vision to the level necessary for flight. In early October 2013, Laren was told he could no longer pass the vision portion of the exam, and his optometrist referred him to Dr. Luetkemeyer in Jefferson City. Dr. Luetkemeyer performed the surgery on Laren’s right cornea, and thanks to advances in surgery techniques, Laren was able to walk out of the office two hours later and pass his pilot’s medical exam eight weeks later in December. “I didn’t realize it would be such an easy procedure,” he said. “It’s amazing how much clearer things are and how they look after that transplant.”
Laren has said that his transplant experience made him more aware of eye, organ, and tissue donation. “I’ve always wanted to be a donor,” he said, “but when you get the impact of it on this side, it’s unbelievable. Everybody should be a donor, everybody.” And he’s also very thankful to the person who made the
selfless decision to donate the cornea he received. “The flat-out experience of being a recipient of a donor, knowing what someone else has done and how it affects you, sheds a whole new light on donation,” Laren said. “Especially for me. Eyesight is one of the most critical things when you crawl in the cockpit. Your eyesight has to be very, very good. So I can’t express enough thanks.”
With renewed vision and medical clearance to fly, Laren was back in the air for his first post-transplant flight in January. “It was just unbelievable,” he recalled. “Especially at altitude it can be so clear anyway. There was just day-and-night difference, what you can see, other airplanes, seeing the ground from 40,000 feet. I’m so thankful that I’m able to keep flying, something I love to do. I’m able to keep flying these jets. So I can’t express enough thanks to the donor who returned my sight.”
Join Laren and the millions of Americans who have declared their choice to be eye, organ, and tissue donors by signing up for the donor registry at the Donate LifeAmerica website or the local Department of Motor Vehicles office.
Patricia, a retired veteran from the St. Louis Metro area, was completely blind until she received a cornea transplant.
Patricia, a veteran from Fairview Heights, Illinois, has experienced serious vision problems her entire life, including glaucoma, cataracts, and keratoconus. Keratoconus, according to the National Keratoconus Foundation, “is a non-inflammatory eye condition in which the normally round dome-shaped cornea progressively thins, causing a cone-like bulge to develop.” The disease is rare, affecting 1 in 2,000 people, but it significantly impairs vision, and its cause remains unknown. In 2002, Dr. Gans in St. Louis performed two corneal transplant surgeries on Patricia, which restored her vision. “In the left eye, I had already lost almost all my vision, but we had the transplant to keep the eye healthy,” Patricia explained. “In the right eye, though, from 2002 until May 2013, my vision was wonderful.” She enjoyed healthy vision and an independent life except for driving, which she couldn’t do because of reduced peripheral vision and depthperception. Patricia describes this period as “smooth sailing,” but she admits that it was bittersweet. “I was very happy to get the transplants – grateful that the donor families’ hearts were big enough to give me that wonderful gift – but my heart broke a bit because I knew what sacrifices they had to give,” she said.
Despite a lifetime of vision problems, Patricia was able to pursue a successful career. She served on active duty in the United States Air Force for more than 23 years, working in intelligence and security, before retiring from Scott Air Force Base. “When my son started high school,” she explained, “I promised him he could graduate from that school, so I retired.” Afterward, she worked ten more years as a juvenile probation officer in St. Louis’ Metro East region and retired for good in 2005.
In May 2013, however, Patricia fell face-first onto concrete, knocking loose her cataract implant and damaging the cornea transplant she’d received in her right eye. With the left eye effectively blind, the fall on her right side was debilitating – it left her completely blind. Her face and eye were too damaged from the fall to replace the cornea transplant right away, so she spent most of the summer and early autumn in the Central Blind Rehabilitation Center at Edward Hines, Jr. VA Hospital in Hines, Illinois. In that facility, Patricia learned how to live an independent life in spite of blindness. “They gave me all the tools so I could remain independent,” she said.
In November 2013, Patricia was finally eligible to receive a cornea transplant in her right eye, which rescued her from more than five months of total blindness. “My confidence is getting back to where it’s supposed to be. I’m just kind of the happy go lucky person I was,” she said. “I can sew a little bit, for short periods of time. When I go shopping, I am now able to see the brands. I used to have others help me find things. Now I can do more for myself.” As Patricia’s vision continues to improve, she’ll be able to pursue some of her favorite pastimes: spending time with family, quilting, bowling, reading, and traveling to visit her close military friends across the country. “I look forward to the future of doing the things I used to be able to do,” she said.
Patricia’s experiences have taught her many things. “Be a part of the donor registry,” she suggested. “And make regular appointments to see your eye doctor. It is very important to keep the eyes healthy.” Thanks to her optimism, supportive medical care, her donor families, and following her doctor’s instructions, Patricia is on the road to enjoying her retirement with clear vision.
To join the millions of Americans who have declared their choice to be eye, organ, and tissue donors, sign up for the donor registry at the DonateLife Americawebsite or the local Department of Motor Vehicles office.
