My Windows of the Soul (revised)


corneal transplant, organ and tissue donor, organ and tissue recipient, bullous keratopathy, cornea, corneal disease

My Windows Of The Soul

It’s been said that the eyes are the windows of the soul. Have you ever gazed into someone’s eyes and instantly knew something about that person?  Our eyes allow us to see the beauty that is all around us. But for many who suffer from a corneal disease, looking out of our optical portal isn’t such a beautiful sight.

For many years I suffered with both physical and emotional pain brought forth by my cornea problems. For those who may not know, the cornea is the clear lens that covers the eye. Countless eye specialists would examine my deteriorating cornea and be left wondering what was wrong. Many times these doctors would leave the room only to return with others who would take a quick peek. I will always remember the puzzled looks on each and every one of their faces. I felt like I was on display and worried that I would never have a diagnosis.

My eye condition was treated by wearing a contact lens for months at a time in the hopes that it would help to smoothen out my cornea which looked like it had been sandblasted.  So every four weeks for years I went to the eye doctor to have the old contact lens taken out and a new one put in.  Although no corneal specialist that I had seen could figure out what was wrong with my cornea, many mentioned the possibility of a corneal transplant down the line.

In 2000 my corneal disease became severe. This condition, whatever it was, not only affected my eye but every aspect of my life. I had to leave work on several occasions when I would experience such extreme pain from a flare up that it would leave me debilitated. It got to the point where I could no longer work. Along with the pain my vision was impaired so it was hard to do many things.  I worried that I would become blind and found myself becoming depressed.

Once again I was referred by a military doctor to another corneal specialist. This doctor turned out to be a Godsend.  For the first time in years I had actual procedures done and finally what I always wanted – a diagnosis.

It was found that Bullous Keratopathy, a decompensation of the cornea, was the name of the condition that I had been living with.  The excruciating pain that I was experiencing were blisters that would form on my cornea and then rupture, leaving nerves exposed.  Since this condition is usually found in both eyes, and I had it in only one, this was the reason a diagnosis was hard to determine. I have been told that down the line Bullous Keratopathy may rear its ugly head in my good eye.

Before the scheduling of my corneal transplant many painful procedures were performed.  A few times a scalpel was used to remove the top layer of the cornea and a contact lens, used as a bandage, was placed over my cornea. This procedure was done in hopes that when the new layer of cornea grew back it would be free of diseased tissue. That did not work!  Laser was used next with the same hopes as with the scalpel and ended with a contact lens bandage as well. This did not work either!  On to another procedure called anterior stromal puncture which involves making a multitude of tiny holes on the surface of the cornea and once again using a contact lens to bandage in hopes of creating a smooth, disease free cornea.  That also did not work! So on to the corneal transplant……

There are more than 40,000 corneal transplants performed each year. Of all the transplant surgery such as heart, lung and kidney, corneal transplants are the most successful. The surgery is done on an outpatient basis. Either local or general anesthesia is used for this procedure.

Since I was under local anesthesia I was awake throughout the whole ordeal.  Numbing drops were placed in my eye to help control pain and keep my eye still.  Medication was used to keep me calm. The corneal transplant procedure took a little over an hour. The diseased part of my eye was cut out in the shape of a circle and a healthy cornea was sewn into place using 16 sutures.

Recovery consisted of wearing a funny looking eye protector that looked much like a strainer.  There would be no bending or lifting.  Eye drops were to be used to help with making sure that the new cornea did not get infected and that a rejection would not occur.  I barely experienced any pain at all either during the corneal transplant or through the recovery period.

A special gift was given to me on that day, my new cornea. I now had the chance to experience a better quality of life.

I decided to find out some information about my donor.  Although names are rarely given, certain information can be available.  When I received the envelope with the return address of my corneal specialist I knew what was inside.  At that moment I was filled with such emotion and overwhelmed with many feelings.  I knew that once I read the information that my corneal donor would then be transformed from being just a donor to a real person.  And that person would always be a part of me.

My donor was a 23 year old man who died in an automobile accident four days before my corneal transplant. It makes me sad to think that, while he was being put to rest, I was being given the chance to live my life without pain. I will never have the opportunity to thank him personally, but what I can do is never take for granted the gift he left behind.

I was never an organ donor and I never endorsed it. Someone who I never knew and who gave so unconditionally to me has changed my outlook on this. I am now an organ donor, and if you are not already please consider it. It’s the most important gift you will ever give. It truly is the gift of life.

FOOTNOTE: If you are suffering from a corneal disease, have had a corneal transplant, or are scheduled to have one please feel free to contact me at pluckingofmyheartstrings@gmail.com.

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12 thoughts on “My Windows of the Soul (revised)

  1. So touching!!! Loved the way you described your pain… Knew about this disease but never knew it was this troublesome 😦 Great that you’ve recovered nicely! Thanks to that donor ❤

  2. I had not considered being a donor, but your blog has unction me to reconsider my thinking. It is a gift and it should never be taken advantage or for granted. Thank you for your blog.

  3. Thank you so much for sharing your story. I was born with cataracts on both eyes but that wasn’t discovered until my later years. I never knew that I couldn’t see as well as the rest. It was just what I was used to. But when it came time to renew my license one year, they wouldn’t issue it because I couldn’t pass any of the visual tests. We came to find out that I was actually Legally Blind. I needed a different kind of cataract surgery, with a chance of losing my eye-sight 50/50. I was terrified. My sister was standing by, ready to give me one of her eyes should I need it. Isn’t that wonderful?

    I’m happy for you that everything went well for you and that you are having a better quality of life now. That’s fantastic. Blessing to you. Peace.

  4. Hi Cheryl
    Thank you for sharing your story..it sounds like you went through a lot. It is always great to hear people re-evaluating current beliefs based on experience, and being willing to change rather than rigidly sticking to something for seemingly arbitrary reasons.

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    • Sometimes we don’t realize how important organ and tissue donation is until something happens and either we need a donor or someone we love does. I know I bought into a lot of the false information about donation until I became a recipient. I then educated myself.

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