An Iowa Boy's Keratoconus Tale: Right Place, Right Time.

An Iowa Boy's Keratoconus Tale: Right Place, Right Time.


I went through my childhood wearing what our military calls "birth control glasses", you know, the ones with thick black indestructible frames so ugly a girl will never date you? Each year, a new pair of frames and a thicker pair of lenses. During my late primary years, sometimes twice annually as my nearsightedness continued to grow as quickly as I. Being adopted at birth, we had no inclination of family history or whether this process would inevitably lead to more serious issues later in life.



I made it through the middle school years as a normal small town Iowa boy, playing sports, running trap lines, hunting and fishing with my dad every chance I got. The glasses were a pain, but an inconvenience I learned to deal with. The summer before my sophomore year, my optometrist wanted to try gas permeable contacts as the regression of my KC had slowed considerably. Thinking that this would help me enjoy football and basketball to the fullest, I jumped at the chance. After several struggles with the cumbersome size my prescription required, the doc gave up and gave in to my whining of eyelid pain and discomfort, allowing me to try soft lenses. Until this point, soft lenses were unable to correct my astigmatism, but the new Torics fit well and were a Godsend!

Throughout high school and most of my college life, I would enjoy the freedom of having no heavy frames on my head, allowing me to do anything I wanted. I took good care of the lenses, however, my summer job for ten years was a dirty one. I worked as a laborer and heavy equipment operator for a road construction company. Years of dust and grime were difficult to keep out of my eyes.

In the summer of 1993 at age 24 I was nearing the end of my undergraduate work, with only a fall semester of student teaching left between me and a career as a teacher and coach. I also became engaged to my long-time family friend, Wendy Keel, with an October wedding planned. Late that summer, I started having a yellowish discharge build up in my eye corners. At first, I was able to rinse with saline and go on. But as the weeks progressed, so did the amount and thickness of the discharge. My optometrist monitored this closely. We tried several types and brands of lenses, and I had many bright lines waved in my eyes to check the retina and other things I know little of. As I entered into student teaching that fall, I was only able to withstand about 8 hours of contact wear. To make the situation worse, I was at the end of the line regarding corrective capabilities of glasses lenses. I was rapidly becoming dependent upon my wife for transportation. Not a good way to graduate and start a career.

Luckily for me, my wife had insurance through her work. It was not great insurance, but without it, I am not sure how we could have afforded what came next. Also lucky for me was the fact a young optometrist named John Thomsen landed in tiny Corning, IA (pop. 1700) to begin a family practice. Dr. Thomsen had studied under Dr. John Goosey of Houston, TX. Dr. Goosey was a pioneer in treating KC through surgical procedures. According to Dr. Thomsen, there were only a handful of doctors worldwide with the skill and knowledge of Dr. Goosey. Dr. Thomsen wrote a letter (which I still have) to our insurance company explaining KC and the degeneration of my cornea. Eventually the insurance company agreed to foot 80% of the bill for an epikeratoplasty on each eye. The catch- I had to live in or very near to Houston for a month!

OK, so my wife was working at a shoe store in an Omaha, NE mall. I was trying to substitute teach, having graduated mid-semester, and we were living pay check to pay check in an apartment. It was a no-brainer decision for me- experimental surgery that likely is a one-shot venture to improve my sight with no guarantee vs. assured legal blindness and a life of dependence. Wendy and I headed to Houston! We would stay in a motel for the first surgery (on my good eye, right side) with my mom and my sister chauffeuring us the first week. After a multitude of scans and tests, surgery day came and I was in and out smoothly- almost. I did almost give Wendy a heart attack. I tend to pass out around big needles, and when the anesthesiologist was poking my wrist to find a vein, it hit me. Apparently your heart rate does strange things, as Wendy evidenced on the heart monitor. She will tell me later it shot to almost 300 bpm and then to 0 bpm. When I woke up, she wanted to kill me.

We returned home with my mom and sister, gathered our belongings, and headed back to Texas. The follow up visits to Houston Eye Associates were every couple days initially. Dr. Goosey was checking the stitches for tightness, clipping them to keep the donor cornea centered- a truly amazing (to me) process for vision correction. Wendy's grandparents lived a couple hours from Houston in De Ridder, LA. As we were racking up some hefty gas, food, and lodging bills, we stayed many nights with them. Within a couple weeks all the stitches had been pulled from my right eye. My correction was a little farsighted and at 20/30- the intended target! It was now time for the left eye.

The final surgery proved to be a little more difficult on me than the first. The doctors decided during the first surgery they had given me too much anesthesia, so for the left eye, they dialed it down a bit. They want a person to be semi-conscious and able to respond to questions. I can still picture the blurry, bloody redness of abstract movement against what seemed to be the sun shining down. I can still hear the muffled voices, though I cannot recall a single coherent statement or response. What I remember well is, the motel room horror for the next eight hours.

As Wendy got me to the room, I was already nauseous and feeling immense pain. The right eye surgery was a cake compared to this. I began a cycle of intense vomiting that recurred every twenty minutes, well into the night. I have never made those sounds before or since, as my stomach was completely void of all but acid, and I could not even keep water down. I felt so miserably for Wendy I asked her to leave and go shopping or something. There was nothing she could do and the doctors assured us it would wear off soon. Thankfully, they were right.

We spent roughly one more week in Houston/De Ridder, even went to Galveston and parked along the beach for a day. Things were progressing normally and Dr. Goosey released me to return home, allowing Dr. Thomsen to finish the stitch removal process. My left eye settled in at a solid 20/30, though not as farsighted as the right. I was told I would always experience a bit of hazing on headlights at night, and low-light visibility could be an issue due to the thickness of the cornea. I might eventually have to wear glasses as my eyes age and the astigmatism grows.

I am happy to say that I at age 45, I have yet to fail the driver's license test, and am still hovering at a combined 20/35- no correction needed. I have two advanced education degrees, am a K-12 school Principal seeking a Superintendent position. I enjoy an active lifestyle and am thankful for that every day. I feel it was more than fate that brought all these events and people into my life, a debt I can never repay.I do not know how or if this story will help anyone dealing with KC. I wish you all the best in your struggle- may you find the results you are seeking!

3 comments:

  1. I found your story really interesting. Thanks for sharing

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  2. Es interesante enque laas historias son cruentas, al menos para el que narra, pero casi siempre tienen un final feliz, A decir verdad, ebn buenas manos profesionales quien padece de queratocono puede vivir una vida plena, acortando los plazos que ha vidivoen busca de soluciones

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  3. Please let me know what the surgery involved. That is amazing vision! I am actually traveling to Iowa to try the new EyePrint Pro lens. It is a scleral lens that is made from a mold of your eye.

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