This surgery has been a long time coming. I know that is a popular phrase, but in this scenario it is far too true. But before I go into that story, let me start with the basics.
What is this surgery exactly? It is IOL implant surgery. Let me break that down a little more. IOL stands for Intraocular Lens. For those of you still smiling and nodding because this still means nothing to you; it is basically a contact lens that will be implanted inside my eye. This surgery has been out for quite awhile. For a normal person, the eye is cut, the lens is placed and fitted in muscular supports left in from the original lens, then the eye is closed. It is a fairly simple surgery with minimal recovery time. However, as we all know, I am anything but normal. Twenty six years ago, the technology was drastically different than it is now and which was far improved from the years of my father's surgery. Back in the early 50's, the technology for this type of surgery was, for lack of a better term, crude. At that time scar tissue was a big concern and common occurrence. To help alleviate this after affect, the muscular supports were also completely removed along with the lens. This means that there is nothing to hold the new lens in place; thus begins the dilemma.
This was the puzzle I placed in front of my ophthalmologist. He told me of this new lens that could be used for my eyes, but it "would just take a couple years" to finish the development process. I was assured I would have it by the time I was in high school. I checked back in and it was "closer but still needs a couple more years." It was now going to be by graduation or before I go away to college. Senior year I checked in, very hopeful, and was once again disappointed. BUT this time they explained that the technology existed and they were only waiting for the FDA to approve it, so obviously it would only be "a couple more years". You keep using this phrase, I don't think it means what you think it means. At this point i was losing hope, but I held on to that dim flame as hard as I could. Through the frustrations and difficulty of college, including 1 am fire drills being executed blind because glasses are slippery buggers that end up under your bed when you are startled, I held onto hope. I began emailing my doctor every year, and every year I received very familiar responses:
"The intraocular lens that we planned on using for you is in clinical
trials finally and hopefully we will be able to fix you up within the
next two years."
"Still in Phase 3 trials. I'd estimate about a year".
This was the point that I had given up hope for this surgery. It had been 10 years of reassuring, disappointment, hope, frustration that had pushed me to accept what I had to deal with. I kept in touch, just in case something changed. It wasn't until October 2013 that I received one email that was the emotional Wild Eagle. I was told it was possible. ..... Possible... POSSIBLE.
That one word continued to ring through my head, yes, no, maybe. I couldn't let myself get excited incase it wasn't able to happen. My stomach was in knots and my lungs spasaming like a fish on a bank. He started talking about the surgery and my recovery time when I stopped him dead: "you mean this surgery can actually happen? It is going to happen?" Then I heard the three words that brought tears to my eyes...
"yes, of course!"
Saturday, February 22, 2014
Monday, February 17, 2014
Where It All Began
Well, here it goes. I have never been a blogger. Even though I grew up in the era when it became the popular thing to do; it wasn't something I was really interested in. The happenings in my life have changed this in me. I have found that I want to tell my story and let you see a few things through my eyes.
This journey I mentioned has been my journey to sight. I know, that seems silly for most people :) but it has been anything but silly for me. Some of you already know my story, but for those of you who don't, where better to start than the beginning. I was born with Congenital Cataracts. For those smiling and nodding because those two words mean nothing to you, let me break it down. A cataract is "a cloudiness or opacity in the normally transparent crystalline lens of the eye. This cloudiness can cause a decrease in vision and may lead to eventual blindness." Congenital simply means to present at birth. So for those playing at home, this means I was born with opacity or clouds in the center of my lenses. If it was not treated it would lead to almost complete loss of vision in both of my eyes. Though they haven't found a cause for cataracts or found a specific genetic tie, I received my cataracts from my father who was also born with it.
The day they told my parents I had the same disease as my father, he cried. After a few moments of anger, fear, sadness, they bucked up and were determined to give me the best vision they could. This meant surgeries, contacts, and lots and lots of appointments.
At six weeks old, I had my first surgery to remove the lens from one eye. A week later, the second lens was removed. I was immediately put in contact lenses for babies. The lens prescriptions were changed weekly to mimic the development of a normal child's eyes. For those of you going "... waaaaiit, contacts... who the heck put them in and took them out?" well, that would be my mother. Yes, a first time mother had to wrap her infant in a blanket and stick her fingers in her baby's eyes to remove a small clear lens. As I grew up, I had contacts as well as glasses because doctors literally had to create vision for me. Just imagine being a teacher and having a 4yr old walk up to you with her hand over her eye saying "my contact fell out, can you help get it back in?"
In second grade, we began to realize they my eyes were crossing. Not a slight cross, instead a 'keep doing that and your face is going to stick like that' kind of cross. My opthamologist had to cut, move, and sew my optical muscles to keep the eye from crossing. Now since it just wouldn't be fair for one eye to be tortured and not the other, fourth grade marked my next surgery.
By middle school, my mom was pretty much over the idea of strapping me down, dodging my kicking feet, and gagging me to silence the screaming. She pushed for me to learn to handle my contacts myself. O that was an adventure. No one really knows how to tell a blind child how to stick a foreign object in her eye. But by 12 yrs old, I had mastered putting in and taking my lenses out without using a mirror. Those of you who use contacts will find that impressive. The image that will always make me laugh is a stranger walking into the eye doctor office. They walk into the area designated specifically for contacts; mirrors, bowls, solution, tweezers placed at every station. Now imagine scanning the room, seeing a college kid getting frustrated as he drops the "stupid thing" for the third time, a grown woman trying contacts for the first time, her face two inches from the mirror as she tries to manage the slippery lens and fluttering eyelid. Then there is me, a 12 year old kid kicking her feet because she can't touch the floor, puts the lens on her finger and pop it directly in her eye in under 4 sec. Let's just say, I was an oddity.
Then again, I have always been a rare patient. Every doctor office I have been in don't really know how to handle me. They see my prescription strength (+9.00), or read my chart, or look at how dry my eyes are and they all do the same thing.... "oh, wow". I have had to explain my vision to so many people, explain what I see and what I can't, explain to kids why I have such massive glasses at sleepovers. But now, after 26 years, this is going to all change. I have a surgery schedule to replace the lenses I lost at 6 weeks old. My surgery is in a little over two weeks; this is why I wanted to write this blog. I want to share my past, my present and my future during this life altering procedure. More to come :)
This journey I mentioned has been my journey to sight. I know, that seems silly for most people :) but it has been anything but silly for me. Some of you already know my story, but for those of you who don't, where better to start than the beginning. I was born with Congenital Cataracts. For those smiling and nodding because those two words mean nothing to you, let me break it down. A cataract is "a cloudiness or opacity in the normally transparent crystalline lens of the eye. This cloudiness can cause a decrease in vision and may lead to eventual blindness." Congenital simply means to present at birth. So for those playing at home, this means I was born with opacity or clouds in the center of my lenses. If it was not treated it would lead to almost complete loss of vision in both of my eyes. Though they haven't found a cause for cataracts or found a specific genetic tie, I received my cataracts from my father who was also born with it.
The day they told my parents I had the same disease as my father, he cried. After a few moments of anger, fear, sadness, they bucked up and were determined to give me the best vision they could. This meant surgeries, contacts, and lots and lots of appointments.
In second grade, we began to realize they my eyes were crossing. Not a slight cross, instead a 'keep doing that and your face is going to stick like that' kind of cross. My opthamologist had to cut, move, and sew my optical muscles to keep the eye from crossing. Now since it just wouldn't be fair for one eye to be tortured and not the other, fourth grade marked my next surgery.
By middle school, my mom was pretty much over the idea of strapping me down, dodging my kicking feet, and gagging me to silence the screaming. She pushed for me to learn to handle my contacts myself. O that was an adventure. No one really knows how to tell a blind child how to stick a foreign object in her eye. But by 12 yrs old, I had mastered putting in and taking my lenses out without using a mirror. Those of you who use contacts will find that impressive. The image that will always make me laugh is a stranger walking into the eye doctor office. They walk into the area designated specifically for contacts; mirrors, bowls, solution, tweezers placed at every station. Now imagine scanning the room, seeing a college kid getting frustrated as he drops the "stupid thing" for the third time, a grown woman trying contacts for the first time, her face two inches from the mirror as she tries to manage the slippery lens and fluttering eyelid. Then there is me, a 12 year old kid kicking her feet because she can't touch the floor, puts the lens on her finger and pop it directly in her eye in under 4 sec. Let's just say, I was an oddity.
Then again, I have always been a rare patient. Every doctor office I have been in don't really know how to handle me. They see my prescription strength (+9.00), or read my chart, or look at how dry my eyes are and they all do the same thing.... "oh, wow". I have had to explain my vision to so many people, explain what I see and what I can't, explain to kids why I have such massive glasses at sleepovers. But now, after 26 years, this is going to all change. I have a surgery schedule to replace the lenses I lost at 6 weeks old. My surgery is in a little over two weeks; this is why I wanted to write this blog. I want to share my past, my present and my future during this life altering procedure. More to come :)
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