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Sight for Sore Eyes, My Life With Keratoconus

I was diagnosed with Keratoconus. I had to have special contact lenses designed and ultimately had two cornea transplants. I experienced a rejection following my first transplant.

The Problem Begins

I really don't remember ever having excellent vision. I got eye glasses for the first time in fourth grade and switched to soft contact lenses in 6th grade. By the time I reached my late teens, my vision without contacts was atrocious. Despite the minor inconveniences of wearing contacts lenses, my life was never significantly impacted by my poor vision. In mid 2004, however, that all changed. I had recently re-located for the fourth time in 5 years and went to see a new optometrist. She was a very nice young lady that informed me that I needed to update my prescription. She ordered my new lenses and a week or so later, I went back in to try them on. My vision was not what I was hoping for and a series of unsuccessful visits ensued. I tried three or four different brands of lenses and several different prescriptions without attaining what I considered to be acceptable vision. I, like most people, had never heard of Keratoconus. That was about to change.

Diagnosis and a Solution

Frustrated, I decided to try a second opinion and went to see another optometrist. About 10 minutes into the exam, he gave me a preliminary diagnosis of Keratoconus. Keratoconus (often called "KC" for short), as described on the Angeles Vision Clinic's website, is "..is an irregular protrusion of the cornea, the clear surface over the colored part of the eye. It is similar, structurally, to the crystal of a watch. If this crystal or windowpane is not smooth, the light will not bend evenly and an irregular image will be formed. Like looking through a bumpy piece of glass." KC is not a common disorder; according to the National Eye Institute, it's estimated to affect one in 2,000 people. The cause of KC is not known, but research conducted by noted Cornea Surgeon Yaron S. Rabinowitz, indicates that there is a genetic component to the disease. For more information on Keratoconus, visit the National Keratoconus Foundation Website.

My new optometrist referred me to a doctor an hour away from my town who measured the "topography" of the corneas in both eyes. He confirmed the diagnosis and made my first pair of customized Rigid Gas Permiable (RGP) lenses, commonly known as "hard contact lenses".

For KC patients, RGP lenses must be custom-designed to fit the exact curvature of their cornea. As Dr. William D. Trattler and Dr. Gary Heitling explain, "Their rigid lens material enables GP lenses to vault over the cornea, replacing its irregular shape with a smooth, uniform refracting surface to improve vision." When I received my first set of lenses, I was shocked to see the noticeable cone shape of the lenses themselves. I was even more shocked when I put them on and could see 20/20 for the first time in about a year. While RGP lenses take some getting used to, the adjustment was fairly easy and within a few weeks, I didn't notice them at all.

Every six months or so, my prescription would change and I would have to get a new set of custom contacts designed. My right eye was noticeably worse than my left eye and as the disorder progressed, I noticed distinct changes to my vision without my contacts. It's difficult to explain, but it's a bit like looking through a window that has Vaseline smeared all over it. Visit kcvision.org to see pictures of what life looks like through the eyes of a KC patient. I also began to experience some of the other symptoms of KC including light sensitivity and poor night vision.

About 18 months after my diagnosis, my family and I relocated to Iowa. Initially, I was concerned about finding a new doctor that understood Keratoconus, but I quickly learned those concerns were completely unfounded. The University of Iowa Hospitals and Clinics has one of the most advanced cornea centers in the world. I was incredibly relieved to find out that I would be very close to some of the world's foremost experts on KC and cornea disorders. Looking back, I realize that it was a colossal stroke of luck to be re-located to this area.

Despite the best efforts of the Contact Lens Clinic at the University, by mid-2020, it became clear that the KC in my right eye had progressed beyond the RGP lens solution. The curvature of my cornea had become so pronounced, that I could no longer wear a lens without it constantly falling out. After discussing the situation with my doctor, I was referred to a cornea surgeon to evaluate surgical options.

Surgery and Recovery

I met with the surgeon and after a complete evaluation, he recommended a cornea transplant. Cornea transplants are only necessary in about 15-25% of Kerotoconus cases according the The National Keratoconus Foundation. The procedure for a cornea transplant is similar to any other transplant. According to the Mayo Clinic, the defective cornea is removed with a cookie cutter-type instrument called a trephine and a healthy cornea from a donor is inserted and stitched into place.

On the day of the surgery, I was placed under general anesthesia during the procedure and was discharged a few hours after the surgery was completed. I wore an eye patch home from surgery which was removed the following day. I had some minor pain for a few days, but it wasn't terrible and I returned to work after only a week. I had to take steroid eye drops several times a day to avoid rejection and antibiotic eye drops to fend off infection. My eye was extremely red for about two months after surgery. About a month after my surgery, I picked my daughter up from school. My wife normally picks her up so she was excited that Dad was picking her up for once. When she arrived at school that morning, she told her teacher that I was picking her up from school that afternoon. She told her I was, "the big guy with the red eye."

Following surgery, my vision varied from week to week as my eye healed. I went to see the surgeon regularly and he strategically removed stitches over time to tweak my vision. Slowly, my vision improved. Eventually, my vision was reasonably good uncorrected and with contacts, I could see 20/20 out of that eye. For more than a year, I struggled with light sensitivity, but other than that, the surgery didn't have any significant long-term impact on day to day life.

Rejection in a Foreign Land

A little more than a year after my surgery, my family and I relocated again. I accepted an opportunity to complete a two-year expatriate assignment in Russia and while it was a very exciting opportunity, I worried about my eye. According to Right Diagnosis.com , rejections can occur for several years after a cornea transplant is performed and I was concerned about a rejection when I was so far from home.

One morning, while I was living in Russia, I woke up with all of the symptoms of a rejection. Following the surgery, I was repeatedly warned that if I had any symptoms of rejection: Redness, Extreme Sensitivity to Light, Vision Loss or Pain, I should call my doctor immediately. That morning in Russia, I had all four symptoms and I immediately called the phone number that my company had given me for medical emergencies. Within hours, I was evacuated by commercial airline to Munich, Germany for treatment. The trip from Russia to Munich was a bit intimidating because I wasn't allowed to wear my contact in my right eye and as a result of advancing KC in my left eye, my vision was quite poor. I traveled from Russia to Munich essentially legally blind. When I arrived at the hospital in Munich, the doctor and his assistants were waiting on me even though it was after 11:00 pm. The doctor confirmed that my body was rejecting my cornea and he immediately started steroid treatments to fend off the rejection. I ended up spending a week in Munich for treatment and ultimately, the rejection was reversed.

One More Time

I completed my expatriate assignment in Russia in 2020 and returned to Iowa. A few months after returning, my doctor and I decided that I needed to have a transplant performed in my left eye. Compared to the first surgery, it was a very similar experience except that I had less anxiety because I had done it before. The only differences between the two surgeries were that with the second one I had a bit more post-operative pain, but the redness went away much more quickly.

Life Goes On

It's been two years now since I had my second cornea transplant and since I don't have any more eyes, I hope it's my last. My doctors tell me that I can expect the new corneas to last a lifetime and barring any unforeseen circumstances, I should not need any more surgeries. I still take steroid eye drops once a day and I wear contact lenses in both eyes. My corrected vision is now 20/20 and my uncorrected vision is much better than I can ever remember it being, even when I was young. When I got fitted for my first post-surgical contact lens in my left eye, it was an unexpectedly emotional experience. For the first time in years, I was able to see 20/20 in both eyes. Thanks to 21st-Century medical technology, the skill of several doctors, specialists and surgeons and the generosity of two donor's families who made a thoughtful decision in their time of grief, I have my sight.

A few years ago, I made the decision to serve my community by becoming a Reserve Police Officer. One of the qualifications for the position was to have corrected vision of 20/20 and uncorrected vision of 20/100 in both eyes. Without the surgical intervention, I would not have been able to come close to those qualifications. Another qualification for becoming a Reserve Police Officer is to shoot a passing score on a marksmanship qualification course. Not only did I pass, I qualified as an expert marksman. Again, without treatment for Keratoconus, that would have been impossible. While my experience with KC has been frustrating, expensive and even a little painful, I now have a great appreciation for something most everyone takes for granted, the gift of sight.