Stories of hope

Ever since I can remember, I struggled with vision issues.  I, just like my mother, was diagnosed with Corneal Dystrophy Lattice Degeneration as a toddler. This rare genetic disease breaks down the corneas over time and each new “episode” causes the cornea to tear apart (ulcerate), leaving the person in horrible pain as the cornea repairs itself.  Stress, hormones and other triggers cause the disease to flare up and unfortunately there is no way to predict when a corneal tear will occur.

Although the dystrophy was noted in both eyes, only one eye at a time would ulcerate. The ulcerations were sporadic all through my life – the earliest I can remember is in kindergarten when I would have to wear an eye patch when my cornea would ulcerate.

As I grew and entered nursing school, the ulcerations became more painful. The pain would be intense enough to keep me down, preferably in a dark room for days until my eye would heal and I could tolerate opening it again due to the light. It was described to me by my doctor as if “someone has taken a Brill-O pad to the surface of my cornea.”

Despite the pain I went through on a regular, almost monthly, basis, I was able to graduate from nursing school.  I was the first person in my family to go to college and am very proud of my degree to help others.

As my vision grew worse, simple things like cleaning my house and driving became more difficult.  I would take the same route to and from home every shift, follow semi-trucks because they were easier to see and hope my exits were not closed due to construction because I could no longer read the signs ahead of me.  Another issue was reading my texts on my phone.  I would use the largest font allowable to clarify the messages.  My vision was like looking though wax paper in my worst eye.  I had to take more medical leave each year putting my career in jeopardy – I needed my vision for my job as a nurse otherwise I could not work.

Finally, in 2007 the scarring came to a point where it was determined I needed a transplant in my right eye. Between completing college, three pregnancies, working night shift as a pediatric nurse at Nationwide Children’s Hospital, and life demands, the accumulation of scarring had taken its toll.

As surgery day approached, I realized one very generous, thoughtful donor was giving me a gift.  Everything changed that day.  Even though my disease is not gone, I had a new view – it was like looking through a brand new window!  I was able to get back to a comfortable routine until 2016 when my left eye also needed a transplant – and again, a generous donor gave me the gift of sight.

After the last transplant I needed special contacts to assist my vision.  At that point everything changed!  All because my two cornea donors gave, I can see the color of people’s eyes – I hadn’t been able to see the color of eyes for more than ten years. What a difference to see the eyes of my patients and those I love so dearly.  I actually commented to my husband I could see his wrinkles and age spots as well as my own!

Every day I put my lenses in, I am thankful for my donors and their decision to give.  I’ve written to their families to say thank you.  I hope that when I leave this earth I am as unselfish as they were and am able to help others by being an organ, eye and tissue donor. Please register today!