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.”
After Robin received her cornea transplant, her eyesight improved from 20/200 to 20/70 in one day.
For five years, Robin of St. Louis adapted her life around her declining vision. Yet, because of two generous donor families and a talented eye surgeon, her lost vision was restored soon after her cornea transplants.
In 2007, Robin, a busy working mom and business analyst for a local corporation, began noticing her vision appeared cloudy. Although her doctor diagnosed her with Fuchs’ dystrophy, they both thought it would be years before drastic measures would need to be taken to save her vision.
However, two years later, after losing much of the vision in her right eye, Robin could no longer read out of her left eye as well. Once she underwent a necessary cataracts surgery, her eyesight declined to 20/200, leading her ophthalmologist to believe if she didn’t undergo a cornea transplant within the year, she would lose her vision completely.
Said Robin, “After my cataracts surgery, I couldn’t watch TV or garden. I had to get a bigger computer monitor at work and change the font size on all of my computer access programs. I had still been able to drive because of my left eye, but once I lost vision in both, I knew I couldn’t drive any longer.”
Robin underwent two transplants in 2010 – one in June and one in December. According to her, the outpatient surgery was “amazing.” Within one day, her eyesight improved from 20/200 to 20/70, within four days she could watch T.V. again, and within seven, she was back to driving. Overall, it took about three months for her vision to completely stabilize.
Robin noted that her vision is better today than it was when she was 11. She no longer has to wear glasses to work on the computer, and she has been able to return to her favorite hobbies, including traveling and knitting. Most important, she is finally able to see with clear vision her son compete in high school sporting events.
“I’m just so incredibly grateful to my donor families. I can appreciate how difficult that decision was for them, but I’m so thankful they did what they did. I’ve been a registered organ donor for 30 years, but I really never thought I would end up being a recipient. Donation is such an incredible gift that people can give – it definitely impacts another person’s life.”
“The day after the surgery, when the nurse took the patch off my eye, I said, ‘I can see you!” The doctor was thrilled.”
Like many individuals suffering from Fuchs’ dystrophy, a degenerative disease of the cornea, Jackie of Raytown, MO. was able to adapt her life around her condition. But as the disease progressed and her ability to participate in her favorite activities began to suffer, Jackie knew a cornea transplant would be the only way to restore her lost vision.
Jackie first became aware of her Fuchs’ following a cataract surgery on her right eye in 2003. “When I returned to the doctor’s office the day after surgery to remove the patch, he asked me to read the chart on the wall, and I said, ‘What chart?’ That’s when they realized I had Fuchs’.”
It took Jackie a year to regain any vision in her right eye. She eventually underwent a successful cataract surgery on her left eye, but within a couple of years, her vision began deteriorating rapidly, which affected her quality of life.
Said Jackie, “I pretty much quit driving at night because the glare of the lights distracted me. I had problems with embroidery at times, especially cross stich, and I would notice after I finished something that I had jumped crosses.”
Upon her ophthalmologist’s suggestion, Jackie met with a cornea specialist who performed a transplant on her right eye. After a successful surgery, Jackie was amazed how quickly her vision began to return. “The day after the surgery, when the nurse took the patch off my eye, I said, ‘I can see you!” The doctor was thrilled.”
Today, Jackie can read without her glasses as well as embroider and quilt with no difficulties. She is also able to drive at night again, which allows her to attend her 17-year-old grandson’s basketball games and take her granddaughters to their gymnastics classes.
Because of her donor family’s generous decision to give the gift of sight, Jackie continues to pay it forward by encouraging others to pledge to become eye donors by joining their state’s donor registry at www.donatelifemissouri.com or www.donatelifekansas.com.
“Please, please register. It’s one transplant that is pretty successful, and there is nothing greater than the gift of sight. People don’t realize how terrifying it can be to think you might be going blind.”
After her vision returned following her cornea transplant, Mary was able to grab her camera to capture the images she had missed seeing for years.
At age 42, Mary of Emporia, KS was diagnosed with Fuchs’ dystrophy, a progressive disease in which one’s vision becomes blurred. Like many younger patients who face the disease, Mary wondered how she could juggle her family and busy career as her eyesight deteriorated.
Explained Mary, “It seemed to progress quickly, and I had stopped driving at night, which was so difficult having kids and activities. I no longer felt comfortable doing certain things at work, and I felt panicked (and a little pitiful) that was losing my vision. I even convinced my husband to move into town so that I wouldn’t have to drive home in the dark the 10 miles out that we lived.”
While Mary found ways to adapt her life and her work as a nurse around Fuchs’, a tragic turn of events made simply dealing with her vision loss no longer viable. A few years after her diagnosis, Mary put her own health concerns to the side to help her husband in his fight against cancer, which eventually took his life.
“A few months after he died, I realized my vision had gotten significantly worse, and as the sole parent, I had to be able to drive at night and had to be able to work. It was time to do something!”
In December 2010, Mary received a cornea transplant on her right eye with tissue provided by a donor family. Their gift was especially poignant after Mary’s own loss. “They are my miracle. I know the pain of their loss and am so appreciative that in the midst of their grief, they chose to make a gift that changed my life. It really hit me because my surgery was right before Christmas, and I know how hard the first Christmas is without your loved one, having just experienced that the previous year. I ached for them, and prayed that they might find peace.”
Mary’s transplant was a sight-saving success. Although her recovery required her to lie on her back for 72 hours and she endured some minor pain and irritation, her vision has improved considerably since her surgery – “It’s like having an HDTV in that eye! Everything is so clear and crisp, it’s absolutely amazing!”
Within two days, Mary was able to see the numbers on her alarm clock without glasses, and within two weeks, she no longer saw halos around streetlights as she drove in the dark. Her transplant has given her more confidence in her job and has allowed her to enjoy her favorite activities – reading, gardening, photography, and participating in church activities – in beautiful, brilliant clarity.
Today, Mary encourages her fellow Kansans to consider pledging to give the gift of sight by joining www.donatelifekansas.com.
“We don’t like to think that anything bad could happen to our loved ones or ourselves. The reality is that bad things, tragic things, can happen to good people all the time. Organ and tissue donation is a chance to transform that tragedy into a miracle. How beautiful to think that your last act on earth would be life-saving or changing for another – what a loving legacy!”
