KosAbility is a community diary series posted at 5 PM ET every Sunday and 8 PM every Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.I was diagnosed with Keratoconus in my early 20's. Keratoconus is a progressive thinning disease of the cornea. The cornea loses its normally round shape, and becomes cone shaped. And your vision becomes very hard or even impossible to correct.
In the early stages, Keratoconus can be treated using strong eye glasses. As the condition worsens, vision will be distorted even with strong eye glasses, and patients will need to wear rigid, gas permeable contact lenses (RGPs). Ultimately, about 15%-20% of Keratoconus patients will require a cornea transplant. I was one of them. There is no known cause for Keratoconus. This rare condition typically starts in adolescence or early adulthood.
The Keratoconus in my left eye has remained moderate and stable. My left eye is 20/20 to 20/25, but with very strong eye glasses. The Keratoconus in my right eye became very severe. I was legally blind in my right eye for many years (the definition of legal blindness is corrected vision of 20/200 or less). I couldn't read the Big E on the eye chart using my right eye with any amount of correction.
The National Keratoconus Foundation has an excellent website. The pictures in the top center give a slide show illustrating how vision can be distorted. This is a must view!
The Keratoconus had a moderate impact on my life. My left eye got me by. I set my computer icons and fonts bigger than most people. I would see halos at night, and my night time depth perception was very reduced. I usually didn't drive at night unless I knew exactly where I was going. I was afraid to drive in reduced visibility weather. I found many people didn't understand why I declined invitations to go places after dark. Also, deep down I would worry. Would my left eye get significantly worse? Would I be unable to renew my drivers license?
By the mid 1990s, the vision in my right eye was no longer correctible using prescription eye glasses. I would have to wear an RGP if I wanted to see using my right eye. I tried the RGP contact lenses, but I couldn't tolerate them. They were too uncomfortable. Also, the lens would fall out all the time and took me an hour to get them in and out. I finally gave up and decided to wear my eye glasses and get by with just my left eye.
A few years later, I was referred to an optometrist who had experience treating Keratoconus patients. This doctor told me I could still use a soft contact lens in my left eye. But he'd use a "piggyback lens" in my right eye. He would take a soft contact lens, put a hole in it, and I'd have to fit a hard lens through the hole.
I couldn't adjust to the piggyback lens either. I was able to adjust to the soft lens in my left eye. The right eye was more comfortable, but still hard to tolerate. Also, it now took me two hours to get this new contact lens contraption in and out. The lenses still fell out all the time. My right eye vision was better, but still not great. I began wearing the contact lenses less and less. Then I went two months and never wore them. I opened up the case one day and they were ruined! This was the last straw for me. I was done with contact lenses as I did not have the energy to deal with all this. I decided to wear my glasses and get by with my left eye. I also blamed myself. I assumed I lacked the self-discipline necessary to adjust to the RGPs. After all, some people wear them. I learned years later the problem wasn't me. My cornea was too steep. The contact lens rocked like it was on the end of a pencil. I was between a rock and a hard place. My vision couldn't be corrected using prescription eye glasses. I had to wear an RGP. But I just could not tolerate them. While many people have problems tolerating RGPs, it was even harder for me given my steep cornea.
A few years later I again felt ready to investigate if something could be done to help my vision. I found a clinic that seemed to be up on all the new technology. The optometrist said there were advances in contact lens technology, and some Keratoconus patients could now wear a soft contact lens. I was excited about that because the soft lenses are much easier to tolerate. They tried several different contact lens prescriptions on me. They all failed. A couple years later I was told about this new Sclera contact lens. That also failed.
If you have Keratoconus, I think it is very important to see a cornea specialist from the start - not an optometrist or general opthamologist. I didn't know there was such a thing as a cornea specialist, so I never insisted on seeing one and nobody ever suggested I see one until March 2009. The optometrists and general opthamologists tried to help me, but looking back they didn't have the expertise.
And one day in March 2009 the opthamologist just happened to mention if I wanted I could see the cornea specialist in the clinic. He specialized in corneal diseases. I scheduled the appointment.
My appointment with the cornea specialist was different from every other appointment. He was the first doctor that really knew what was going on! I could tell he knew his plan of action the minute he walked in the door. He looked in my eye and immediately told me my cornea was just too steep. The term he used was "off the charts." He said there was no contact lens or implant or anything that could help me. I needed a cornea transplant. I told him my history - how I couldn't tolerate the RGP lenses and how the soft contacts didn't work. He responded as if he had heard this story many times before. I felt vindicated. I no longer blamed myself. I did feel very nervous about having a cornea transplant. For many years, the idea of a cornea transplant frightened me so much I refused to think about it.
I asked him what the prognosis and the risks were. He said after 1-2 years there was an 80%-90% chance I would have 20/40 vision or better with eye glasses, and a near 100% chance with an RGP. The thought of wearing an RGP scared me - no way would I go through this again! He understood, but said while many people have trouble tolerating RGPs, it would be easier after the surgery. And this was not the likely outcome. If vision wasn't satisfactory with eye glasses, PRK Laser surgery would be another option.
He said the main risk was graft rejection. The risk was about 1% in my case. I would have to take anti-rejection Pred-Forte steriod eye drops. I would need to take the steriod drops long term maybe even permanently. I would be monitored very closely for any sign of tissue rejection. If I had a rejection episode, this could be treated. He said its very rare to lose a graft.
Finally, he told me my right eye was so bad I would probably see better when they removed the bandage the next morning!
The doctor's final word was no rush - he was ready to do the surgery when I was ready. If I had questions, call. I called 3-4 times. Each time, his staff was very nice and reassuring. I decided to have the transplant. The risk/reward ratio was too favorable.
The surgery was scheduled for June 23, 2009. The surgery took about one hour. There was no pain during the surgery or afterward. The next morning I was able to see better just as the doctor predicted. I felt optimistic because the doctor was so optimistic. I could read the Big E on the eye chart! The Big E was very faded, like looking through plastic. But that was a big improvement! I hadn't been able to read the Big E on the eye chart for many years even with correction!
I didn't have any significant complications. I had to wear an eye shield at night for about 6 weeks. I had a lot of issues with light sensitivity. I wore heavy sunglasses everywhere - even indoors for about 4-6 weeks. There was also a "foriegn object" sensation the first few weeks. These issues were unpleasant at the time, but looking back they are nothing.
My vision didn't begin to improve much until the doctor began stitch removal after 6 months. He removed the stitches gradually over a few months. I've had all my stitches out for about 2 months now. My last visit they got my vision to 20/30 with strong glasses. The doctor gave me a prescription, and said we would see how I did with this. However, when I picked up the glasses the vision wasn't as good. If I cover my left eye, I can read Daily Kos a little but it is very hard. My next appointment is April 9th. They will recheck my vision, but I'm thinking the doctor will probably schedule me for the PRK Laser surgery. This is not a complicated or painful surgery. I'll probably still need to wear eye glasses, but it would be a much weaker prescription.
Today I'm optimistic about my vision. I don't worry anymore that someday I won't be able to renew my drivers license.
Will I ever need a cornea transplant in my left eye? Probably not. I'm told Keratoconus usually does not get much worse after age 40. That is usually, so I'm keeping my fingers crossed. I couldn't have PRK or any other LASIK in my left eye due to the Keratoconus.
In conclusion, people have cornea transplants for conditions other than Keratoconus. There is also Fuchs Dystrophy, Shingles, accidents, and a rare illness called Steven's Johnson Syndrome. The prognosis and risks are unique to each illness and person.