Living with keratoconus and the treatment I’ve sought.
I had my follow-up visit with the Duke Eye Center for my recent diagnosis of keratoconus on Friday, October 22, 2021. The news my ophthalmologist/corneal specialist shared was good. There is no scarring and no significant change in my eyes — no additional con-caving or coning of my corneas. This is good for multiple reasons, but I’ll just mention two of them. 1. Negative progression of the corneas is minimal. 2. It keeps me out of the tunnel with surgery (a cornea transplant for both eyes) as the light at the end. If you remember, I mentioned not wanting to even think about surgery, so I am ecstatic about this recent news.
My ophthalmologist wanted the same tests done as my previous visit, but two more had been recommended as well. One process required a numbing agent for my eyes. The nurse’s assignment was to assess the pressure of each eye. She announced her need to get near me in order to do this — as she rolled on her stool closer to me, my breathing halted. I am not a person who cares for people in my personal space, however; I recognize sometimes; it has to take place in certain situations. As she dropped the numbing agent in the first eye, I stopped breathing and she held her hand up to go to the other eye and said, “I need you to breathe, Tre. This doesn’t work if you don’t breathe.”
I instantly exhaled and inhaled as I normally would. I apologized — informing her it was simply my body’s natural defense and reaction to someone getting so close. She smiled and said, “It’s absolutely normal and expected, but you still have to breathe.” And breathe, I did. After the numbing agent had been applied, she said softly, “Blink. Blink. Blink.” I did as instructed. She announced coming closer to me again and this time, there was a device in her hand (it looked a lot like this, I failed to ask what it was and I beat myself up for it when I left the building) and she rubbed the tip of the device on my eyeball rotating it in small circles. She did the same thing for the other eye.
The look on my face caused her to giggle. She said, “Wasn’t expecting that, were you?” I most certainly was not! To have someone rub some type of device which captures the pressure of your eyes on your actual eyeballs was clearly not on my list of to-dos that morning when I awakened. Afterward, I saw little black dots for a few moments. It took a few more minutes before I could see clearly again without the little black dots and swirlies, and then we were off to yet another room where I would wait for the ophthalmologist.
I appreciate my ophthalmologist. His bedside manner is one I’d rank a 10 out of 10 and he’s also pretty funny. He entered the room as he did six months ago — ecstatic and noticeably happy to do his job. We elbow-bumped, and we were off to him asking me a few questions to which I had the answers. He began by telling me about the numbers collected at the most recent visit versus my previous one. He also showed me the slight change in my corneas by using the cornea model in the exam room. Just in case you’re wondering, a healthy cornea model looks like a huge contact lens and a cornea model deformed by keratoconus looks like that same huge contact lens bent bottom-up as if it were going to tear in half and come clean off the eyeball. *shudders*
He was pleased with the numbers, and images gathered from the testing. The reassurance I received from him about my current status eased my nervousness and worry as well. I am in a good place to still be a candidate for scleral contacts, however, no surgery is needed at this time. The scleral contacts are supposed to help sharpen the blurry images and my need to squint (natural reaction) to try to see small writing or images far away. To have a sharper vision will be a godsend and I await it like the day awaits nightfall.
Taking into consideration the fact I am severely near-sighted, have astigmatism in both eyes, and have also been slapped with keratoconus, and my vision has not changed drastically in the last six months, was paramount. The news was the best I had received all morning, and I could not contain my elation. Before leaving, they had advised me to continue with the changes I have made, keep up the Pataday regimen, and take as much time as I can away from devoting my eyes to the blue light of electronic devices.
Listen, I appreciate the $5.00 off coupon the center gives for the Pataday eye drops. That mess is expensive for a teeny tiny bottle. But, I digress. It is necessary, and it works.
As it stands, I have an appointment with my optometrist on Friday, February 25, 2022, for my annual eye exam and the fitting of the scleral contacts. I will follow up with my ophthalmologist/corneal specialist on Friday, May 20, 2022. He wants me to have at least a few months under my belt using the scleral contacts before coming back for additional testing. The flip in visits between the two of these doctors for my eyes will take place for as long as my ophthalmologist deems necessary. Keratoconus is lifelong and currently, there is no cure (outside of surgical procedures), so I’d better get rather comfortable with the entire process of it all.
I am thankful for decent vision insurance — I could not afford this level of care without it. By stating this, I am not flaunting the value of my healthcare coverage, but the truthfulness of the aspect to the level of care of which I am receiving. The care is not an inexpensive one and my pockets do not run deep. Take care of your eyes, beautiful people.