[This is a contination of the story of my eyes. Please read "My Eyes - Part 1 (The Diagnosis" and "My Eyes - Part 2 (The Treatment) prior to reading this.]
When the doctor told me I would need a corneal transplant my mind went numb. Because I didn't know much about the surgery I started imagining the worst. And since I like to write fiction stories my imagination went into overdrive.
One of the possibility is your eye could rupture. For me I was picturing a volcano type eruption coming from my eye. Then there was all the science fiction horrors I imagined. Like would I see things the way the donor sees things? Would there be cellular memory in that if I saw the face of someone the donor knew would I think I knew them as well? Let your imagination go wild with the ideas and I probably already thought about them.
But the two worst ideas I ever had took a long time to just come to grips with. I even have my moments now where those old feelings come back and I have to fight off the feelings of inadequacy.
The first feeling was that I would be turned into something less than human after the transplant surgery. On the surface this doesn't make sense because the donor cornea isn't coming from a cow or anything, but another person. Still human. But when I thought of all the crowns and root canals I've had done to my teeth and the moles I've had removed and the bone they filed off from my right heel I started to think that eventually I'd become something less than human. More metal and parts than human.
I've never been one to even consider plastic surgery for breast implants, or butt implants or whatever, but I started to wonder if those people (and I felt I was becoming one of them) are turning themselves into another species all together. And once I had that thought my imagination went wild. Would I have less rights as someone who's "all human"? While this thought is a gold mine for inspiration for writing a science fiction story it's not something you ever want to consider personally.
The second big thought/fear I had was "will I still be me?" It naturally sprang out of the first, "less than human", thought. Now I was thinking I was turning into something or someone other than myself. This surgery was going to alter who I was by hopefully making it easier for me to see, but would that be all it altered?
For the longest time I didn't feel like myself. And that was even before the surgery. Since I wasn't able to wear a contact lens in my left eye I really couldn't see very much from that side. It made driving scary and difficult especially when trying to navigate around the back of an elevator in a parking garage without trying to hit a car from the other direction. $3,000 dollars later in repairs to my car (and all the elevator had to get done was a new paint job) and I just didn't want to drive any more. I couldn't play video games very well. I couldn't read without concentrating so hard I gave myself a headache. And just walking down the hall left me dragging one hand along a wall of cubes so I could keep myself walking straight. I couldn't recognize anyone's face until they were right on me. Some people thought I was being rude not acknowledging them until they were right there when they had waved from far back. That was life for me and I had to live that way until my name came up on the transplant list that they had a donor.
My name went on the list in May of 2004. By October I knew that I should be having my surgery around January or February of 2005. My surgery did happen in February of 2005 and while I was grateful to finally have a date so I could get it over with it was a long time waiting and my imagination had control of my emotions during that whole time. I spent many lunch hours just sitting at my desk crying as quietly as I could so I wouldn't bother anyone around me. When the thought that you might lose your eye comes up and that every hobby you like to do requires you to see like reading, cross stitching and playing video games you do tend to cry . . . a lot.
There was a bit of a hiccup just before my surgery. When my annual benefits enrollment came around I switch health care providers. I wasn't going to stick with an HMO that was going from $50 a paycheck to $150 a paycheck even if I didn't have a surgery coming up. What that meant was that in January when I switched to my new provider I had to run around getting the proper documentation that the surgery I had scheduled in February was something previously planned, medically necessary and that I had been under care for this condition for at least three years. I think we got everything straightened out the third week of January and my surgery was schedule for Feb. 5th.
I think my surgery was schedule for 3:30 in the afternoon. It was going to be his last one of the day. And since I wasn't allowed to eat anything for 12 hours before surgery I didn't have anything after I went to bed the night before. But then again I didn't really sleep that night anyway. That sinking feeling you get in the pit of your stomach when you know you have to do something horrible just grew and grew all night and day. I might have even cried all morning long. I don't remember much before the surgery. But I do remember the surgery, but I'll save that for the next post.
Showing posts with label keratoconus. Show all posts
Showing posts with label keratoconus. Show all posts
Tuesday, August 19, 2008
Wednesday, July 30, 2008
My Eyes - Part 2 (The Treatment)
This is the second entry in "My Eyes" saga so please start reading with "My Eyes - Part 1 (The Diagnosis) so you know what's going on.
Okay, so there's one thing I don't like and that's uncertainty or better yet "the unknown". As much as I wanted to freak out (and I did) about knowing about my condition it helped to know that there was treatment and that things can go on for years before surgery was ever needed.
The first step of treatment was glasses. They don't fix your mis-shappened eye but they will help with your vision. When those don't work you have to move on to contacts.
The fact that I would have to get contacts and my insurance company would pay for them was exciting. The reason why, not so much. You can first start out with soft contact lenses but my eyes had already gone past that point and I had to move to a different kind.
That would be Hard Gas-Permeable ones. And when those didn't work they move you to a HGP lense especially developed for Keratoconus. Fitting a nicely curved hard lens on an eye that is not so nicely curved was aweful. It was painful and it took a couple of years to get the right fit. And then every year my vision had changed because my eyes were getting worse that we had to go through the fitting process all over again.
I can't tell you how many times I just sat in the doctor's office and cried when he would tell me my eyes are getting worse. Just the thought of surgery and the complication and the possible loss of vision in that eye (or the eye itself) was enough to make anyone break down. My doctor was great; he would sit and talk to me and alleviate all my fears before making sure I was okay to drive home. When I finally switched health providers and had to pick another doctor I wasn't sure I would ever find someone as caring and compassionate as that man. I've even recommended him to my parents and anyone still using that HMO.
The special HGP lenses for Keratoconus are meant to try and push back the coning shape of your eye into a more rounded form. They're not very comfortable and just getting through the day at work (on a computer) could be long and painful. I hate wearing shoes and those are usually the first things I take off when I get home, but some days the contact lenses had to come out before I could even think about removing my shoes.
I started playing video games long before I knew I had this problem, but I didn't start playing games online until after I had my contacts. Unfortunately because my eyes hurt so much I ended up playing games with my glasses on instead. This meant that I still had some distortion in my vision since the glasses don't do anything to reshape your eye. Sometimes I wondered if I was just a bad player or if my eyes limited me in how I played.
Eventually you get to the point where your eyes become "contact lens intolerant". That means that your cornea has thinned out so much that putting a small piece of plastic on them become extremely painful. It would be like getting an open wound and just when the first new layer of skin starts to form you keep rubbing it back and forth with a pen or a credit card. The only course then is to stop wearing the contact lenses because you run the risk of rupturing the cornea and losing your eye. If you rupture your eye and all the things inside your eye become things outside your eye . . . well, you're screwed.
I got to that point in January of 2004. I know exactly when because I went on a Hawaiian cruise in December and when I got back my allergies had gone haywire. After seeing my doctor for some new allergy medicine my eyes still weren't getting any better. When I saw my eye doctor he said it was time to start seeing a surgeon.
When I saw the surgeon he told me to stop wearing my contact lens in my left eye and to let it heal for awhile and come back to see him. When I did go back a month later he said it's time for surgery for my left eye.
If you get to the point where you can't wear contact lenses any more you're getting to the point where your cornea might thin out enough that you might rupture it just by rubbing your eye. If you do that you'll lose your eye. So around May of 2004 my doctor put my name on the transplant list for a new cornea.
The next step in the process is a corneal transplant. I was at that stage, but I wasn't ready for it. Over the next 9 month I freaked out almost daily. But I'll save that for the next post.
Okay, so there's one thing I don't like and that's uncertainty or better yet "the unknown". As much as I wanted to freak out (and I did) about knowing about my condition it helped to know that there was treatment and that things can go on for years before surgery was ever needed.
The first step of treatment was glasses. They don't fix your mis-shappened eye but they will help with your vision. When those don't work you have to move on to contacts.
The fact that I would have to get contacts and my insurance company would pay for them was exciting. The reason why, not so much. You can first start out with soft contact lenses but my eyes had already gone past that point and I had to move to a different kind.
That would be Hard Gas-Permeable ones. And when those didn't work they move you to a HGP lense especially developed for Keratoconus. Fitting a nicely curved hard lens on an eye that is not so nicely curved was aweful. It was painful and it took a couple of years to get the right fit. And then every year my vision had changed because my eyes were getting worse that we had to go through the fitting process all over again.
I can't tell you how many times I just sat in the doctor's office and cried when he would tell me my eyes are getting worse. Just the thought of surgery and the complication and the possible loss of vision in that eye (or the eye itself) was enough to make anyone break down. My doctor was great; he would sit and talk to me and alleviate all my fears before making sure I was okay to drive home. When I finally switched health providers and had to pick another doctor I wasn't sure I would ever find someone as caring and compassionate as that man. I've even recommended him to my parents and anyone still using that HMO.
The special HGP lenses for Keratoconus are meant to try and push back the coning shape of your eye into a more rounded form. They're not very comfortable and just getting through the day at work (on a computer) could be long and painful. I hate wearing shoes and those are usually the first things I take off when I get home, but some days the contact lenses had to come out before I could even think about removing my shoes.
I started playing video games long before I knew I had this problem, but I didn't start playing games online until after I had my contacts. Unfortunately because my eyes hurt so much I ended up playing games with my glasses on instead. This meant that I still had some distortion in my vision since the glasses don't do anything to reshape your eye. Sometimes I wondered if I was just a bad player or if my eyes limited me in how I played.
Eventually you get to the point where your eyes become "contact lens intolerant". That means that your cornea has thinned out so much that putting a small piece of plastic on them become extremely painful. It would be like getting an open wound and just when the first new layer of skin starts to form you keep rubbing it back and forth with a pen or a credit card. The only course then is to stop wearing the contact lenses because you run the risk of rupturing the cornea and losing your eye. If you rupture your eye and all the things inside your eye become things outside your eye . . . well, you're screwed.
I got to that point in January of 2004. I know exactly when because I went on a Hawaiian cruise in December and when I got back my allergies had gone haywire. After seeing my doctor for some new allergy medicine my eyes still weren't getting any better. When I saw my eye doctor he said it was time to start seeing a surgeon.
When I saw the surgeon he told me to stop wearing my contact lens in my left eye and to let it heal for awhile and come back to see him. When I did go back a month later he said it's time for surgery for my left eye.
If you get to the point where you can't wear contact lenses any more you're getting to the point where your cornea might thin out enough that you might rupture it just by rubbing your eye. If you do that you'll lose your eye. So around May of 2004 my doctor put my name on the transplant list for a new cornea.
The next step in the process is a corneal transplant. I was at that stage, but I wasn't ready for it. Over the next 9 month I freaked out almost daily. But I'll save that for the next post.
My Eyes - Part I (The Diagnosis)
Okay I've been talking about my eyes for awhile and some of you know the story, but most of you don't. Here it is. It's going to take several posts so it's best to read them in order.
About 10-11 years ago I was in desperate need of a new pair of glasses. I even considered giving contact lenses a try . . . as long as they didn't cost too much. I didn't have any vision coverage through work so everything was going to be paid "out of pocket". So where did I decide to go for a cheap eye exam and glasses? Walmart, of course.
The assistant had me take all kinds of tests with my eyes. For one of them I had to put my face up against a machine to look inside of it. There would be a random flash of light in various places and I would need to push a button every time I saw the light. I wondered why I didn't see as many lights on my left side as I did my right but then I didn't know if that was part of the test. When the assistant pulled the results she said I failed . . . miserably. After another couple of attempts at various test that I did horribly at she said I should really see the doctor and see what he wanted to do about the test.
When he came into the room he look one look at the test results, one look in my eyes and said "Yep, you've got keratoconus." Okay, but what is it?
Keratoconus is a progressive, degenerative eye disease of your cornea. Progressive because it changes over time. Degenerative because it gets worse. What happens is your cornea (the skin-like membrane holding your eye together) thins out over time. Because of the pressure of the fluids and all that stuff in your eye it puts pressure on that thinned out cornea and it bulges out in a cone shape. So instead of your eye being nice and round like a baseball, it's more cone shaped like the end of a football. If you want to know what that makes your vision look like have a look at the photo. Since the light coming into your eyes hits your lenses at all kinds of angles you get overlapping images in your vision.
The doctor said that Keratoconus is considered a medical condition and not a vision condition I would need to go to my medical doctor and get a referral to see a specialist. Thankfully everything would be covered under my medical coverage (which I did have) but getting to that point was a pain in the butt.
It took three months before I finally got everything approved and referred by my HMO and I got in to see a specialist. He confirmed the diagnosis and laid out what the treatment options were. That was when my life started to fall apart emotionally. But I'll cover that in another post.
About 10-11 years ago I was in desperate need of a new pair of glasses. I even considered giving contact lenses a try . . . as long as they didn't cost too much. I didn't have any vision coverage through work so everything was going to be paid "out of pocket". So where did I decide to go for a cheap eye exam and glasses? Walmart, of course.
The assistant had me take all kinds of tests with my eyes. For one of them I had to put my face up against a machine to look inside of it. There would be a random flash of light in various places and I would need to push a button every time I saw the light. I wondered why I didn't see as many lights on my left side as I did my right but then I didn't know if that was part of the test. When the assistant pulled the results she said I failed . . . miserably. After another couple of attempts at various test that I did horribly at she said I should really see the doctor and see what he wanted to do about the test.
When he came into the room he look one look at the test results, one look in my eyes and said "Yep, you've got keratoconus." Okay, but what is it?
Keratoconus is a progressive, degenerative eye disease of your cornea. Progressive because it changes over time. Degenerative because it gets worse. What happens is your cornea (the skin-like membrane holding your eye together) thins out over time. Because of the pressure of the fluids and all that stuff in your eye it puts pressure on that thinned out cornea and it bulges out in a cone shape. So instead of your eye being nice and round like a baseball, it's more cone shaped like the end of a football. If you want to know what that makes your vision look like have a look at the photo. Since the light coming into your eyes hits your lenses at all kinds of angles you get overlapping images in your vision.
The doctor said that Keratoconus is considered a medical condition and not a vision condition I would need to go to my medical doctor and get a referral to see a specialist. Thankfully everything would be covered under my medical coverage (which I did have) but getting to that point was a pain in the butt.
It took three months before I finally got everything approved and referred by my HMO and I got in to see a specialist. He confirmed the diagnosis and laid out what the treatment options were. That was when my life started to fall apart emotionally. But I'll cover that in another post.
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