What a Beautiful World
Today marks the 8th anniversary since my vision saving cornea transplant. I've never really put down on paper my journey and how much this has impacted my life. I'm going to give it a shot in hopes that others can relate with their own struggles and maybe even convince someone to sign their Medicare Card as an organ donor. I'm forever grateful to the donor and their family for this most selfless and lifechanging act of kindness. A total stranger, whom I will never know the identify of, gave me my independence and life back. As I was going in to surgery, a resident doctor told me "It's an amazingly healthy cornea! It's from a young person in Virginia." I was sad to learn that this was likely a tragic loss, and made me even more mindful that I have to protect and make the most of this precious gift.
I was diagnosed as a young teenager with Keratoconus. It's a progressive eye condition causing the cornea to thin and become shaped like a cone instead of a spherical basketball, resulting in light refracting all wonky. This causes vision to be blurry, can make you see double, and night time is a nightmare with impossible to navigate halos. I used to say I turn in to a pumpkin when the sun goes down. I put in some photos so you can better understand how people with KC see the world.
My mom has KC and so does my sister. I wasn't very concerned when I was diagnosed, I mean, my mom's eyes weren't too bad if that's what my future had in store for me. She wore soft lenses and never really complained about it. No big deal.
As years passed, I got away with wearing very high prescription glasses. Night driving was awful, and to be fair probably quite dangerous, but I did it anyways as my eye doctor never told me I couldn't. Hard lenses would have corrected my vision better, but I had a terrible phobia of anything in/near my eyes, so this was out of the question. For example, even makeup artists could not apply mascara to me. How on earth would I manage hard contact lenses? So I continued with my sub par but passable glasses.
I was shocked to learn in my mid twenties that KC is really not the same for all people. For most, it's a nuisance and essentially entails the same treatment as anyone with a severe astigmatism. But, for a small percentage of people, it can become debilitating. That was what was happening to me. I was finding it more difficult to ski as I could no longer see the terrain. I decided to give up night driving as I was terrified I'd hurt someone or myself. I had to read everything closer and closer to my face. I couldn't recognize someone until they were directly in front of me. No more reading books or magazines. Too hard. I just ordered whatever other people ate at restaurants because I couldn't see the menu anymore. The list went on of what I could no longer do. My now husband was surprised at how well I was able to hide my vision impairment by making small adaptations that many people wouldn't even notice.
The eye doctor told me if I wore hard lenses I'd be able to see again. I decided my loss of vision was so severe, I'd have to do something about it, even if I was terrified of anything near my eyes. I went through months of behavioral therapy to get over my fear of being fitted for these lenses and having to poke my eyes daily. Thank god I did that.
When I finally went in to be evaluated for these specialty contact lenses, I was then informed my eyes could no longer be corrected. Essentially no prescription glasses or contact lenses would improve the vision at all. There was only one option left, a cornea transplant. Taking the cornea from a deceased cadaver and sewing it in place to the patient, me. I spent close to a year in therapy to get accustomed to the idea of wearing contact lenses, how on earth was I ever going to go through with this? Oh, and on this same day was told my vision was no longer legal to drive. I was considered legally blind.
I cried. A lot. I was terrified of the surgery and at the prospect of not seeing. I was lucky to be working for my family business at the time and lived close to my parents. My mother drove me to work everyday. I parked my car and left it at the office since I didn't know if I'd be allowed to drive again. My then fiancée (now hubby), guided me when we walked and told me when there was a crack in the road and helped me on stairs since my depth perception was so poor. It was a strange time to be living as a legally blind person when I'd been able to see not long ago.
I made up my mind that I would put myself on the waiting for a transplant. The surgery has an extremely high success rate which helped reduce my anxiety slightly. My options were to see blobs forever or have a really high chance of actually seeing the world around me again. I wanted to see again more than my fear.
The surgery went smoothly and although I had bouts of extreme pain during recovery, I saw again. Really quickly. The day after my transplant I took off my bandage as I was instructed to do. I was alone in my bathroom, and I looked in the mirror thinking I'd look like Frankenstein. I had visions that there would be blood oozing out of my eyeball literally. Instead, it was crystal clear and looked like a normal healthy eye. The first thing I noticed was wrinkles. Man I looked old! In fairness, I hadn't really seen clearly since I was 14 and was at the time 31. It made me smile. The vision fluctuated but continued to improve over the course of the year. It was so exciting to see again. I saw license plates and kept reading them out loud as a challenge. I woke up one morning and noticed my husband had freckles. They were all over his arms, I had no idea. I saw the dust in the corners of my house. I saw lots of details and all were amazing.
There are ups and downs with a cornea transplant. Mostly ups. I still suffer from light sensitivity. There's a chance of rejection forever. I still have stiches in my eye and sometimes they break requiring immediate attention from my surgeon. When the stiches are adjusted it can affect my vision. This week, a stich popped, and now I no longer even need glasses to see 20/20! I'm so lucky and grateful that I can see again.
My company Pokète is thanks to my regained independence and my love for seeing the world, exploring, and enjoying everyday adventures close to home.
If you ever thought about signing the back of your Medicare Card to become an organ donor, I hope my experience is a reminder of how beautiful it can be for a possible recipient.