Accountability,  Anxiety,  Change,  Mental Health

Keratoconus “The Process of Acceptance and Control”

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Fact: The effects of Keratoconus can vary throughout the day, and may be influenced by a variety of factors – such as tiredness, ill health, bright sunlight, lighting & other environmental factors. Most people find it hard to describe exactly what they are seeing to another person.

I was diagnosed with Keratoconus at the age of 19. It progressed so soon I had no other option but a cornea transplant. In 2011, my surgeon performed surgery on my right eye. Within a few months I could see better with glasses but still had difficulty seeing out of both eyes. I struggled driving at night and sometimes during the day if the glare happened to be worse that day.

Living with an eye disease and partial hearing loss, I try to live a simple life to make things less complicated for me and my family. Simple things I used to do like reading, night rides, going out with friends, bike riding , attending concerts, seeing my family’s faces and even cleaning my house was just not the same anymore. I had a part time job I ended up quitting since I struggled to see at night. It became too dangerous for passengers and me. When I absolutely had to drive at night, I used my high beams, took the same roads and avoided places I’d never been.

 

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April 1 2014, I attempted to get my second corneal transplant but I was shocked to find out I was pregnant and my surgeon couldn’t perform surgery. The facility explained they had recently started requiring patients to take a pregnancy test after a patient’s baby had heart problems from anesthesia. She was also unaware of her pregnancy. I not only found out I was pregnant on April fool’s Day but I was also 6 months along. I was thankful my child was safe and that I found out before it was too late. But I was also a nervous wreck & scared thinking about caring for a baby with such poor vision.

In between that time, I experienced episodes of stabbing pain, broken sutures and extreme sensitivity to light. It was too painful to leave darkness until the pain went away, which typically takes hours up to a full day.

My vision had gotten worse out of nowhere. I could no longer see out of my glasses and when I tried to get another prescription the doctor declined and explained that I can only get hard contacts. He also told me that “legally” I shouldn’t be driving. It frustrated me because doctors have been trying to push contacts on me for years and it seems they don’t give you the time out of their day knowing you have Keratoconus. I tried the contacts a few years ago and it was the worst pain I’d experienced throughout this journey. We could never get the fitting right and it only scarred my cornea more. I remember working at Starbucks and my $800 contact popped right out of my eye and into a drink without me noticing. I had to chase the customer down to get it back. That was the last day wearing those.

Summer 2017, I attempted to arrange a cornea transplant for my left eye but my surgeon advised my transplanted cornea had a major decrease in vision. She declined scheduling the appointment until she can figure out why this is happening. After speaking with her I started to become depressed again and realized this could really go on forever and even after the transplant it’s clear I will never really be able to see as clearly as I’d hoped. But after multiple visits and increased steroid eye drops my transplanted cornea finally reached 20/80 vision again. I picked up my new glasses that help me see 20/25 in the right eye. Seeing this clearly, even out of just one eye is an amazing feeling. And gaining my independence means the world to me. I feel like there is hope and I wake up motivated to take advantage of what I’ve been blessed with. There are many with other eye diseases that have permanent vision loss. They can only dream to witness what I have.

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Finally, on September 19, 2017 I was approved for the second transplant. The procedure was very successful. The same nurse was there from 2014. She held my hand while I cried after finding out I was about to be a mother! It touched my heart that she remembered me and explained how she thought about that day for years, wondering if everything turned out alright and if the baby was healthy. I showed her a picture of my surprise baby girl, Sayge, who was now 3 years old. She was ecstatic to hear she was fine and I now had two little girls. The following day, I could read the largest letter on the chart. This is huge progress! I feel like I need to live the best life for the two families that lost a loved one and donated such beautiful gifts. In 2012, I wrote the family of the donor from my first surgery but I unfortunately never heard back from them. I understand families need time to grieve or may not be as comfortable responding. I’m currently typing a letter to the other family and I’m hopeful they will respond.

I still get discouraged thinking about my future and how it’s likely I will need these surgeries again; especially if Holcomb C3-R is still not affordable in the next few years. C3-R is ultimately what I want. It has a long term success rate of 99%, meaning 99% of Doctor Wachler’s patient’s progression stopped after one treatment! The down time is just a few days and less pain vs. a few weeks and major pain with a transplant.Either way it’s a blessing and I can only think about what’s in my control. Like beating depression and losing all the weight I’d gained during that time. I’ve lost 155 lbs. so far! I just wanted to share my story to inspire other KC patients and even individuals struggling with obesity and depression. Balancing your life and Keratoconus can get you so down but continue speaking to professionals and do your own research. KC is more common than it used to be and they’re still discovering new operations to try and stop progression. Best of luck! 😊

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