A former keratoconus patient with the eye patch she wore after a cornea transplant saved her from blindness in her left eye. She may need a transplant in her right eye as well.
Despite her diagnosis of a progressive eye disease 18 years ago, the keratoconus patient has not only Rollerbladed in 23 different countries, but she has also lost her delicate $80 gas permeable contact lenses in many of those countries as well.
“Down the drain in London, and on the dance floor in Rome,” she said. “It’s actually kind of depressing to think of how many I’ve lost.”
This long time flight attendant for American Trans Air is now able to enjoy her active lifestyle of travel thanks to what she calls her new youngest part. Last November, she received a cornea transplant in her left eye from a 24-year-old male. The transplant at New York Eye and Ear Infirmary stopped the disease, keratoconus, from eventually blinding her.
Keratoconus causes thinning of the cornea, the clear outermost layer of the eye, producing a cone shaped bulge. Many people suffer from refractive errors, like nearsightedness, farsightedness or astigmatism that also affect the shape of the cornea, but these disorders may be corrected with soft contact lenses. However, in the early stages of keratoconus, the only way to correct for vision is to wear gas permeable contact lenses. Over time, the disease causes intense blurring and sight impairment due to tissue scarring.
She still wears one gas permeable lens for the keratoconus in her right eye. Even though it’s uncomfortable, she is thrilled to have one eye strong enough not to require a second gas permeable lens. “They’re very painful,” she said of the lenses. “Any time you blink, it rubs up and down.” Optometrists have to constantly refit her gas lenses because the disease causes the shape of the cornea to change.
The rubbing from the left lens created so much scar tissue that her doctors told her a cornea transplant would be the only thing saving her from eventual blindness in one eye. Her name was placed on a waiting list and for a week, she was prepared to be rushed to the hospital for the surgery. On Nov. 15, after the three-hour procedure Heap left with a brand new cornea.
Her transplant was made possible through The Eye Bank for Sight Restoration Inc., located at 120 Wall St. The world’s first eye bank, since 1944 it has collected, processed and distributed donor eye tissue for thousands of sight saving cornea transplants throughout the city, Long Island and the lower Hudson Valley. The Eye Bank works with a number of hospitals, including New York Downtown Hospital in Lower Manhattan.
The Eye Bank’s executive director said the process of matching donors and recipients was gratifying.
“Working here gives you a perspective that you don’t get in other places because on a daily basis we’ve got this list of patients waiting for cornea transplants,” she said. “How is that going to happen? To know there is only one way for that to happen; that life and death are what makes the world go round and each day we hope that someone does hear the message that they can make a difference in somebody else’s life and consent to donate.”
Currently there is state legislation being debated which would give people who join the New York State Organ and Tissue Donor Registry the final say in the decision to donate organs. Today, even if a person is listed in the registry, the family of the deceased still makes the final decision if the organs are donated. The Eye Bank encourages early discussion among family members of wishes for organ donation, and hopes more people sign up for the registry.
Last week, The Eye Bank honored its first recipient Young Ambassador Scholarship. The program was created to encourage young people’s efforts to educate the community about eye donation. The recipient won the $1,000 scholarship for collecting the largest number of donor registration forms recorded in a single drive.
The patient with keratoconus wrote to her donor family through the Eye Bank, thanking the family for the donation and telling them a little about herself. She hasn’t heard back yet, but understands that it may take some time before a family is ready to communicate.
“I can see now because of someone that gave up their cornea. I’m able to travel the world, I’m able to Rollerblade, I’m able to be normal,” she said. “You just get a very different perspective; I think you’re more thankful of little things when you receive a gift like that.”
Since keratoconus worsens over time, the keratoconus patient knows her right cornea may reach the stage where it will also need to be replaced. If she reaches that point, she is willing to go through with another transplant. Until then, she takes the recovery process very seriously and looks forward to an even more active life full of scuba diving and traveling.
“I think about the guy that gave up his cornea for me and the people that donate,” she said. “They really gave me a gift.”
To learn more about becoming a cornea donor, call 212-742-9000 or visit www.eyedonation.org.