Susan, from Grandview, MO, is back to quilting and her other favorite hobbies thanks to her cornea donors, her surgeon, and Saving Sight.
“Five or six years ago, when I renewed my driver’s license, I almost failed the vision test. They told me I wouldn’t pass the next time,” said Sue of Grandview, Missouri. “So I decided to see an ophthalmologist for an eye exam before my next driver’s test.” However, Sue’s vision problems persisted. “Then one summer, three years ago, I went outside on a very bright day,” she said. “I saw little shards of sparkles in the air. I couldn’t figure out what it was—it was annoying and only happened in the sunlight.” At her doctor’s recommendation, Sue visited Sabates Eye Center in Leawood where she was diagnosed with Fuchs’ corneal dystrophy,a disease that causes the corneas to deteriorate. “The doctors said I was going blind,” Sue remembered. “That’s scary to hear, but they told me it’s a curable disease.” Approximately a year later in August 2013, with the diagnosis of Fuchs’ dystrophy confirmed, Sue received her first corneal transplant, which replaced the diseased part of her cornea.
Sue has experienced vision problems her whole life. As a child, she suffered from amblyopia (“lazy eye”) and had almost no sight in her left eye. She wore a patch over the stronger eye to help strengthen the weak eye, a common treatment for amblyopia. “I started wearing glasses at six years old, and that’s the first time I saw that things have hard lines,” she said.
After her first transplant surgery, Sue admits to feeling impatient and disappointed with the results. “I didn’t know that it takes time for the cells to grow, plus I didn’t get new glasses until after the second transplant in December,” she said. By February or March, after the second surgery, her sight was improving. “At each checkup my sight was a little better,” she said. “I was able to read small font and see better at a distance. I am seeing things I haven’t seen in years.”
Sue’s vision continued to improve. “I learned I had to be patient and trust my doctor,” she said. “Stay in good communication and develop a good relationship with the doctor. Mine is very good. I trust her skill and knowledge.” But the moment of realization for Sue, when she knew how far her vision had improved, was when she was quilting, one of her favorite pastimes. “I started a landscape quilt for my husband while recovering from the first surgery,” she said. “After the second surgery, I took it up again to work on. I sat down at the sewing machine to change the thread. Just a month before, I had to ask other people to thread the needle for me. Without thinking about what I was doing, I started to thread the needle, and I did it. It took me a moment to realize what I had just done. I was so excited!”
Another of Sue’s hobbies is oil painting. Before the transplant surgeries, everything was dark and slightly fuzzy for her. “My teacher asked me why I paint everything so dark,” Sue said. “I told her, ‘I don’t, that’s the way I see it.’ Now, the colors I see are so brilliant. I realized that not a lot of light was getting into my eyes, so I couldn’t see true colors. In the distance, I could not see tree leaves or birds in the sky. The loss was so gradual I didn’t realize for a long time just how bad my sight had gotten.”
Two miniature quilts Sue gave to Saving Sight as part of her “The Grateful Series.”
With her sight restored, Sue is back to work as a guest service representative at Target and returned to her favorite hobbies: quilting, painting,
reading, gardening, and baking. In fact, she’s currently at work on creating a series of miniature quilts: one for each of her cornea donors’ families, two for Saving Sight, one for her surgeon, Dr. Macaluso, and one for herself. “People have helped me and I wanted to show how grateful I am for their gifts. Now I can continue to enjoy my passion for color through painting and quilting.”
To join the millions of Americans like Suewho 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.
Bill, a retired RN and veteran from Topeka, Kansas, is back to enjoying retirement and his motorcycle after two corneal transplant surgeries.
Bill, a retired operating room RN from Topeka, Kansas, knew he was at-risk to develop Fuchs’ corneal dystrophy. Causing an inner layer of the cornea to blister and cloud, Fuchs’ dystrophy is a hereditary disease, and it ran in his family. Bill’s mother and grandmother had both lost vision to it, but Bill was a full decade younger than they were when he was diagnosed with Fuchs’ dystrophy as well as cataracts. “My vision was cloudy, like looking through lacy curtains or a foggy windshield,” Bill said. Eventually, his sight worsened to 20/600 in both eyes, uncorrected, which left him unable to enjoy one of his favorite hobbies: riding his motorcycle. “I had to curtail that because my vision wasn’t good enough,” he said. “I didn’t feel confident. You have to really pay attention to watch for potential hazards.”
Bill became a nurse after serving in the U.S. Army. Originally in the Kansas Army National Guard, he was activated in May of 1968 and sent to Fort Carson. Later he was sent to Vietnam as a medical corpsman, where he worked in a surgical hospital for six months in the spring and summer of 1969. When offered higher education through the GI Bill, he left Vietnam inspired to enroll in nursing school. “In Vietnam, they had some excellent nurses,” he remembered. “I worked in intensive care there for most of my tour. I always liked being a medical corpsman, helping folks out. I also liked the idea of going to nursing school and being prepared for a specific type of job.”
As it turns out, Bill’s 34 years as a nurse prepared him for his cornea transplant surgeries. “I wasn’t worried about the operation itself,” he said. “I knew they do the surgery under local anesthesia and the patient doesn’t have pain.” What Bill didn’t know, though, was that through an advancement in transplant surgery and eye banking called DSAEK, Saving Sight was able to provide his surgeon with tissue specially prepared for Bill’s unique eye problems. “I wasn’t aware they could do partial-thickness corneal grafts,” he said. In other words, the DSAEK corneal tissue was prepared such that Bill only had to have part of his cornea replaced. “Dr. Cavanaugh, my surgeon, got rid of the diseased endothelial layer of my cornea and transplanted the donor endothelial layer,” Bill explained. This less invasive procedure resulted in a reduced recovery time. “There were no stitches needed,” Bill said. “They put an air bubble in there and you stay laying down for 24 hours while it adhered.” In fact, Bill’s recovery after the first transplant in August 2013 was so successful that he was able to get the second cornea transplant less than three months later.
“It was quite an experience thanks to the kindness of two donors,” Bill said. “I‘m able to see pretty well now.” In fact, Bill has 20/40 vision in both eyes and wears trifocal lenses. So now he gets to better enjoy his well-deserved retirement, including returning to his favorite hobby. “I plan to do some more riding,” he said.
“I bought a new motorcycle. I’ve been holding out for a liquid-cooled, metallic red Harley-Davidson. It should arrive any day now.”
To join the millions of Americans like Bill 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.
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.”
Sue’s vision continued to improve. “I learned I had to be patient and trust my doctor,” she said. “Stay in good communication and develop a good relationship with the doctor. Mine is very good. I trust her skill and knowledge.” But the moment of realization for Sue, when she knew how far her vision had improved, was when she was quilting, one of her favorite pastimes. “I started a landscape quilt for my husband while recovering from the first surgery,” she said. “After the second surgery, I took it up again to work on. I sat down at the sewing machine to change the thread. Just a month before, I had to ask other people to thread the needle for me. Without thinking about what I was doing, I started to thread the needle, and I did it. It took me a moment to realize what I had just done. I was so excited!”
