Last update: January 20, 2000
It seems to be fashionable to keep a diary of your experiences if you have a cornea transplant, so I guess I'd better get with it. But first, a bit of history.
Fourteen years ago, I could see perfectly, except for a bit of myopia. And so it was up until a couple of weeks after the birth of my second child, Aron. My first child, Heidi, got very sick with what we think was herpes stomatitis. I spent most of a week sitting on the sofa and holding her. (It's difficult to explain to a two-year-old why she can't play with her new baby brother.)
Anyway, it was a stressful time, and I developed a strange neuralgia on my scalp. (Was there ever a neuralgia that wasn't strange?) A few days later a large, three-headed carbuncle erupted on my forehead. I went to my GP and he said, ``It's either a spider bite, or shingles. In either event, I should inject some cortisone.'' So he did. It started to get better.
Several days after that, I felt like someone was poking an ice pick into my right eye, and the white part (the sclera) turned bright red. I went to my eye doctor, and he said, ``Yup, you got shingles, and it's gotten into your cornea.'' I learned that shingles is caused by herpes zoster, the same virus that causes chicken pox. At first we thought I might have caught it from my daughter, but that's not how shingles works, and it was probably just the stress of a new child plus a sick child that caused the latent virus to flare up.
In those days they hadn't invented acyclovir yet (well, they had, but it was still in clinical trials), so the treatment of choice was to dump steroids of various sorts into the eye. By that means we kept my vision in pretty decent shape (20/40 or so) for a couple of years. But eventually my cornea started getting thinner (by about 20%), and I had to stop the steroids, and immediately the cornea scarred up, and I became legally blind in my right eye. Everything looked like waxed paper. Fortunately my left eye has stayed in excellent shape, so I've never been incapacitated by my incapacity. I can still read the 20/15 line, with glasses.
NOTE: if you ever get these symptoms, get yourself to an eye doctor Right Now. And not just any eye doctor--find a cornea specialist. This happened to a friend of mine, in fact, and I sent him to my cornea specialist, and he got acyclovir, and isn't in need of a cornea transplant as a result. In his case it followed the nerve down the side of his nose into his eye, but the cornea was still the final destination.
Anyway, shortly after going off steroids I went to a doctor at UCLA who recommended against a cornea transplant because herpes zoster patients don't have as good a success rate as ordinary people. At that point they quoted the chances of success at about 40%.
Then they took flash photography of my eye at point blank range. It is hard to think of a more excruciating means of torture. After that, anything is a breeze.
And I went home, and waited.
Seven years ago, I moved up to the Silicon Valley, and got a new cornea specialist, Dr. Mark Volpicelli. He was delighted to be able to take me up to a symposium at UCSF where about 25 doctors examined my eye, one after the other. I guess I was a bit of a rarity--most herpes infections in the cornea are herpes simplex. So every time a new doctor came into my room, I got to explain, ``It's herpes zoster, with a discoform keratopathy.'' The doctors were all impressed that I knew so much. That was kind of fun. Then they took more flash photography at point blank range. That was not so fun.
Anyway, the general consensus was that it was still premature for a cornea transplant, but that we could try the new excimer lasers that were being developed to try to burn away the scar tissue. Unfortunately, all the clinical trials were closed at that point, so we did nothing.
And I went home, and waited some more.
Then last spring, Dr. Volpicelli told me we'd waited long enough. The excimer lasers were now being used regularly for PRK (photo-refractive keratectomy), and had recently been approved for PTK (photo-therapeutic keratectomy). And in addition, cornea transplantation had advanced to the point where my chances were much better if it came to that.
So I went on June 12 and let Dr. V. perform a PTK, which essentially entailed burning away another 20% of my cornea (in the middle--he left the edges thicker in case we needed to do a transplant later). That got rid of most of the haze, but I still had some deep scarring, so it turned out not to be so successful. But it was worth it in the sense that my cornea was at least temporarily clear enough for Dr. V. to determine that the rest of my eye looked pretty healthy. He told me we should wait six months for the eye to settle down before we considered a transplant.
So I went home and waited some more.
But this time I only waited for a few months. One of the reasons that herpes zoster patients are at higher risk for a transplant is that they tend to grow new blood vessels (called ``ghost vessels'') into the cornea. A normal person doesn't have blood vessels in their cornea, which is why they don't have to do tissue typing for cornea transplants--it's hard for the white blood cells to get to the cornea. However, I had some blood vessels--four main ones, in fact. So I went in Nov. 6 and got them zapped with a blue-green argon laser. It was quite a hunting expedition. Every time Dr. V. zapped a vessel, the blood would back up, and another vessel lurking off to the side would open up. In the first session he zapped me over a hundred times. I came back three weeks later and he zapped my another 80 or so times. But the result is that the blood supply is now shut down to my cornea. My pupil is a bit out of round now because the iris was backstopping the laser and reacts by shrinking a little, but that's not unexpected, and shouldn't be a problem. The iris still works fine. For a while I looked like a cat. Weird.
I'm scheduled to have my transplant on Tuesday, January 20th, 1998.
For Christmas my family gave me (at my request) a book of random dot stereograms. I've never seen one, because they were invented after I lost my depth perception. I'm looking forward to actually seeing one. In fact, I'm very much looking forward to seeing the whole world in 3-D again. I hope to once again be able to perform such simple tasks as putting a cap on a pen, and putting the key in the cardoor, and pouring milk into the glass instead of onto the table. I'd like to see around the raindrops on my windshield with my other eye. When you only have one good eye, one raindrop (or one eyelash) can really make it difficult to drive safely.
Actually, I'm writing this on T-10, because I didn't have a web server up
yet. Now I do.
I went in and got all my instructions for the 20th. Dr. Volpicelli looked at my eye again and said everything was looking good for the transplant. It's hard to tell through the cornea, but there might be a bit of cataract behind the lens, he said, but if so we can take care of that with a 20 minute operation afterward. The transplant itself should take about an hour and a half (a little longer than usual because my cornea is uneven around the edge and that will slow him down some. There's also about a 5% chance that no suitable tissue will be available on the day in question. I find it interesting that they can actually schedule a transplant these days. I'd expected to wear a pager. Perhaps it's a regional phenomenon. Many Web pages out there seem to indicate that other areas still have waiting lists. Perhaps it's because Northern Californians have been into social responsibility since before it was fashionable. Not that I didn't sign my donor card when I was a Southern Californian.
I've elected to have local anaesthesia. I very much want to listen in on
the proceedings, even if I won't be able to see much. I want to see if it's
true that you can't see anything if your eye muscles are paralyzed, except
when the doctor jostles your eye. And the doctor promises it won't hurt
much at all. He says the worst part of being awake for it is that he'll
give me a pill to soften up the eye, and it's a strong diuretic...
At this point I'm in a contradictory psychological state. On one level I'm quite calm and feel like everything is under control. At another level I'm exceedingly excited. I find I'm reading (and rereading) every little scrap of info on the Web that has anything to do with cornea transplants. Of particular value to me are the diaries of other people who have had a transplant. When I ran out of other people's diaries, I decided I had to write one of my own. So here you are, reading this.
I also wonder a lot about The Donor. Someone out there is in the last week of their life, and presumably doesn't know it. I find myself praying constantly for their spiritual welfare.
And I'm still waiting...
[I'm actually typing this the day after, but I was in no shape to type anything yesterday, being on LD50 of Tylenol. Today I can at least hear myself think. It's also fortunate that I can touch-type, because I'm certainly not looking much at what I'm typing. Please excuse any typos.]
The day started not-so-bright and plenty early at 5:30, when my computer woke us up with the sound of a rooster. Approximately one second later, my wristwatch started beeping. I believe in a certain amount of redundancy, as you can see...
And the alarms did in fact wake me up--I didn't have much trouble sleeping the night before. Oddly, it wasn't because I took the sleeping pill the doctor gave me, because I didn't. But I'd been a bit allergic to the world the day before, so I took 4 milligrams of Chlortrimeton, which has basically the same effect as a sleeping pill. I was also not in a lot of psychological distress--that peeked about 3 days earlier, about the time I knew my donor was, er, doning. Nowadays it takes three days to do all the necessary bloodwork on the donor to make sure they don't have HIV, hepatitis, or what not. Anyway, for the past three days I've been ``getting over'' my grieving.
Back to the present (or at least yesterday's present). I had my last shower
for a week while Gloria had breakfast, and then we were off. We got there
at 6:25 a.m. for a scheduled 7:30 operation. (The brochure says to arrive
two hours early, but they don't even open the doors till 6:00, and they
called us and told us they really only needed an hour at that time of day.)
So in we went, and I signed all the forms that say I understand exactly
what I'm doing, including the fact that the doctors have no idea what
About that time our pastor and his wife, Tim and Robin Isbell, walked in.
The timing was propitious, because Glo was starting to come down with a
migraine, and was wondering if someone else was going to have to drive me
home after. As it happened, the Tylenol worked, so she was better by the
time I was done. Maybe it was just a tension headache. I have no idea why
she might been so tense.
They call me in and aim me towards my bed, number 6. (I get to have the same bed all the way through--it serves as the operating table too.) At first they think I can just get half undressed, but later the doctor calls and reminds them that he's giving me a powerful diuretic to soften the eye, and I might need to avail myself of a bedpan if things run on too long, so off the pants come too. Fortunately I get to keep my socks on. And my undies. Whoopee. At least my gown was cute.
They start dumping in eye drops left and right. No wait, make that right and right--they're only operating on my right eye. In fact, they ask me several times to confirm that. That's fine--I believe in certain kinds of redundancy. In fact, I intend to be awake during the operation so I can tell them myself if they screw up.
Then they put a bag of lead shot (or maybe depleted uranium) on my right eye which increases the pressure in the eye, so that the eye will dump fluid rapidly, so that when they take the bag off, the pressure will be lower. (``Why are you banging your head against the wall?'' ``Because it feels so good when I stop.'') Having a heavy weight on your eye is not quite as uncomfortable as banging your head on the wall. I agree with those correspondents who say that this is the most uncomfortable part of the operation. (It can't be compared with what comes after, of course.)
The nurse puts the pads on my chest and my side for the EKG leads that'll reassure them that my heart is still pumping. She warns me that the one on my side will be cold. Of course, it was even colder. Some corollary of Hofstadter's Law, no doubt.
The anaesthetician, Dr. Lamb or Lam, shows up about then and distracts me while the nurse sticks an IV in my arm. (I think that's the first time I've ever had an IV, though my arm has been poked often enough to take things out of it.) Dr. Lamb explains that we'll be doing a ``sedated local''. I'm a little worried that I'll be so sedated that I won't be able to enjoy the operation, but it doesn't seem appropriate to tell the doctor to go easy on the sedation. I just try to look as calm as possible so he'll go easy on me.
One of the nurses who'll be assisting Dr. Volpicelli comes and introduces herself. She reminds me a lot of my mom. That is to say, she's very nice. She holds my hand while Pastor Tim holds my other hand and prays for me.
Time is getting on, so I get to make a last dash, IV and all, into the bathroom. (Remember the diuretic?) At least it's a brief respite from the weight on my eye. Back out I come, back on the weight goes. Definitely depleted uranium, or something transuranic. Maybe there's a small neutron star in there.
One last thing on the schedule--time for a really nice kiss from Gloria, Then off they wheel me to the operating room. We go around a couple of corners. ``This is the fun part,'' I point out.
The nurse makes a big deal of getting my bed's wheels situated just so, so I tease the nurse that there's gonna be an earthquake any moment, so what's the use? We get into a conversation about the joys of getting earthquake insurance for condos. Not that I've ever had to do that myself, but I've heard enough horror stories. She snaps on my EKG leads, and slips a little clamp thingie over my left index finger. She says, ``This is to monitor...''
``Oxygen,'' say I. She's impressed. Speaking of oxygen, they next run a tube over my face with a couple of outlets into my nostrils. They ask me if that's comfortably intertwined with my moustache, and I answer in the affirmative.
Dr. V. swaps my pillow for one that feels like a beanbag. It's not a fancy pump-the-air-out-of-to-harden pillow like the one I had last summer for the excimer laser. (In fact, the whole operation feels a bit low-tech compared to the PTK. True, there's an operating microscope over my head, but everything else is basically done by hand with simple tools.) Anyway, the pillow makes me feel like my neck is unsupported, so the doctor sticks a roll of something under my neck which makes it much more comfy. And as long as we're going for comfy, they get me all cocooned up with blankets and sheets so I can't move my arms. They say they don't want me reaching out and bumping the equipment, but I wonder if they have more trouble with ``sedated'' patients reaching out and pinching the nurses. I do remember wishing several times during the surgery that I could move my arms a bit more, but I don't think I was intending to pinch anything.
Somebody says something about ``pentathol'', and Dr. Lamb or Lam says I might feel a bit lightheaded. He injects the ``truth serum'' into my IV, and sure enough, a few seconds later, I feel lightheaded. I don't feel as if the logical part of my mind is at all impaired, but it is slowed down a bit. I make a joke that they can now extract all my deep dark secrets. I find I have to slow down my speech to keep from getting my tongue tangled. I also have to speak up a bit more because by now they have a sheet over my entire face except for my right eye.
You know the old phrase, ``Stick a needle in my eye''? Well, they don't quite. It goes in under the eye, and they basically fill the whole orbit with local anaesthetic, since there are quite a few different nerves going to the eye, and this is the easiest way to get them all. Some people have reported they also got a shot behind the ear--I didn't get one, and in retrospect, I didn't need it. I was all ready to ask them which nerve the behind the ear shot was aimed at, and then they didn't. Oh well. All that preparation reading up on cranial nerves wasted...
It didn't take long for the eye to go numb. They stitched a plastic gizmo to the sclera of my eye to help hold it still (which is why my eye is so red as I type this).
Next Dr V picked a trephine (a circular knife, essentially) to cut out the
various things that needed cutting out, such as my cornea, and the donor's.
There was some discussion between the doctor and the nurse over which
trephine was which, rattling around with the 8 mm and 7.5 mm before
settling on the 7.75 mm. I was a little surprised at this point because in
an earlier exam the doctor had talked about going as large as 9 mm in order
to match the nearsightedness of the other eye, so I asked him about that,
and he said he'd decided to do more correction on that eye, and that it
made more sense given the donor tissue in question. Okay, he's the doc. I
gotta trust him at some point. (In fact, that point was many months ago.
Many years, in fact.
Now comes a gap, not because I don't remember it, but because everyone wandered off to (I presume) use the trephine on the donor cornea. They were very quiet during that time.
Then they came back to drill the hole in my cornea. Up till this time I could make out the bright light shining on me--it was roughly in the shape of a church window. When they started carving into my cornea, the image scooted around some, but apparently I could see up through the middle of the trephine, so the image didn't go away entirely. Or maybe I was seeing around it.
Other people have reported the interesting phenomenon that, with your eye muscles paralyzed, you don't really see much of anything except when the doctor jostles your eye. I did notice this, but it wasn't a complete contrast. When the eye was still, I saw maybe 25% of what I saw when the eye was being moved. Perhaps it had to do with the timing of how fast the anaesthetic was soaking into the various nerves. More on that later.
Dr. V. had to work at cutting my cornea out. He explained to the others that it was because my cornea was uneven, and that some parts cut through before others. A little more jiggling around, and it was done. Then there was the matter of getting it out. He tried a little suction device, but gave up on that because my cornea wasn't flat enough. He asked the nurse for some of that old-fashioned viscous goo. That did the trick.
With the cornea out, all I saw was random light pretty much, though it certainly wasn't uniform. I suppose to some extent the pupil itself was acting as a crude pinhole camera--I remember that the doctor had remarked earlier (about the time he was measuring trephines) that he was happy the pupil was so small. Perhaps that's another reason for doing the smaller graft.
Then they placed the new cornea in with some special tool, and did four cardinal stitches.
``Cardinal?'' said the nurse?
``As in the points of a compass,'' I mumble through the sheet.
Then the doctor started around doing the main stitches. I asked him whether he was doing a spiral stitch or individual stitches, and he told me he was doing individual, because it would give him better control over astigmatism later. I presume that this is partly in response to my uneven cornea, but maybe he does this on everyone.
Oddly, I could feel the sharp pain of the needle going in on some of the stitches, but though there was an awareness of the pain on some physical level, I didn't hurt at all on the conscious level. Of course, I'm sure the local was blocking most of the pain, and the rest of it simply didn't matter to me because of the sedative.
The doctor used several different plier-like things to do each stitch. One to install the stitch, then two ``tie-ers'' (it took me a minute or so to puzzle out why my eye needed ``tires''), and finally an instrument to nip off the extra nylon. It seemed to take a couple stitches for the nurse and the doctor to get into a rhythm (which is why he kept asking for the ``tires''), but then it went rapidly. After making his way all the way around, I asked him what he does about the original four stitches, and he said he'd replace some of them. I think he replaced a couple of them, presumably the ones that weren't in quite the right place to begin with.
Then he went around burying the knots. I asked him whether he buried the knots on the inside or the outside. He replied that he put them into my part of the cornea. By the way, you may think it's suboptimal for me to have been asking all these questions while someone was doing delicate surgery on my eye, but I was careful to ask questions only when the doctor was waiting for an instrument from the nurse. Besides, I think they were amused.
I could tell from the vision that I had a new cornea. In some ways the new image was sharper than the old one, and in some ways more hazy. I suppose that's only to be expected, given all the stuff they were squirting here and there, to keep my eye wet and to make sure there were no bubbles inside.
Another factor in my view through the new cornea was that, in fact, my optic nerve was pretty highly anaesthetized by then. I didn't actually realize it until they pulled the ``scaffold'' out of my eye, installed a bandage contact lens, and then removed all the sheets over my face. I then realized that what I was seeing out of my right eye was maybe only a tenth as bright as what I was seeing out of my left eye. Weird.
I apologized to Dr Lamb or Lam for being such a boring patient. He laughed and said he likes boring patients.
Then they taped a metal shield over my eye, and as they were wheeling me out to the recovery room I thanked everyone. The operation had gone exceedingly smoothly--in fact, though they reserved the room for two hours, it took less than one. The important thing about that, of course, was that I didn't need to figure out how to use a bedpan.
In the recovery room, I was offered several inducements to continued living, such as a cup of juice, and a shot at the restroom, which I gladly accepted. Very shortly thereafter, they offered me the opportunity to dress and vamoose. Which I did. Well, Gloria did the driving, of course.
I was fine till about 1:00. I managed to send out some messages while I was still under anaesthesia just to let everyone know I was okay, and that everything went fine. When the anaesthetic wore off, I had the mother of all headaches. In retrospect, it was probably half caffeine withdrawal, to go along with the withdrawal from the anaesthetic. Anyway, I ended up doing 1000 mg of Tylenol every four hours, which I discovered later is actually 50% more than the maximum dosage. The regular strength is 325 mg, and you take two of those every four hours, and they're 325 so you can take three of them to be the same as two extra strength Tylenol. But what I didn't realize was that the extra strength bottle says you take 1000 mg every six hours. So I was technically OD'ed, but hey, I needed it. As the day wore on I had a couple of naps, and after the second one realized I'd probably feel better if I had a cup of tea. And it did help a lot, so it probably was caffeine withdrawal in part.
I also took a couple pills the doctor gave me that were diuretics to lower the pressure in the eye, since, he said, there's a bunch of extra protein floating around inside the eye the first day, and it tends to plug the drains. The pills made me a little queasy, but I think they helped. The second one I took at 4:30 in the morning with my last major dose of Tylenol. As the night wore on, the primary symptom became extreme sensitivity to light. In fact, I had to shield my eyes from the night light in the bathroom.
It's odd that I would have light sensitivity when my ``bad'' eye was completely covered, but when light hits your good eye, both irises respond, And boy do you know it.
It's hard sleeping on only one side, but I'm not allowed to sleep on my right side or my stomach, and if I sleep flat on my back I get problems with acid reflux, so I end up sleeping propped up, which ends up putting a kink in the middle of my back. Oh well, it's not forever. I'm used to waiting...
Now I just have to get better. They say I shouldn't have to wait more than
about a year, plus or minus two years.
:-) Realistically, they might try to fit me with a new prescription in as
little as three months, if all goes well. But it does take about a year to
completely stabilize for most people. So now the real waiting game begins.
I've waited 13 years for to get this far, so it shouldn't be that big of a
This morning my only symptom was photophobia (sensitivity to light). I went to my first post-op appointment, and they took the metal shield off. (I still have to wear it when I'm sleeping.) As soon as we pried my eye open, my eye starting emulating an artesian well, and it's been doing that off and on for the rest of the day. It makes it hard to put drops in when they wash right back out. So along with the photophobia I now have a lot of plain old irritation.
But anyway, blinking through my brand new tears, I read the third line on the eye chart. They were very happy with me. The doctor says I have a bit of a scratch on the cornea, a normal occurrence, and that it should fill in with my own epithelium as the old epithelium sloughs off.
Driving (or rather, riding) back and forth to the appointment was pure agony. You have no idea how much light can reflect off a truck even through two pairs of dark glasses and a pair of hands. But I was better after I got home.
This afternoon and evening I typed this in. It was probably a mistake from a pain point of view, though the doctor said today that it wouldn't actually hurt me to use my eyes as much as the pain would let me. Certainly there must be some benefits to a continuous flow of fresh tears, or I don't think the doctor would be so eager to make sure I have a supply of artificial tears. I did put a drop of that in earlier today, but it seems a bit redundant somehow...
I discovered later in the day today that I could regulate the amount of light reaching my eyes by walking around with a robe over my head. So now I can make it out to the kitchen to at least help people help me make my coffee and feed my fish. A hat helps cut the overhead light, and I'm glad I installed a bunch of X10 switches that let me dim pretty much any incandescent light in the house. Believe me, I like them way dim right now. And I'm typing all this in on my laptop because I can turn the brightness down on it too, and it wasn't all that bright to begin with. Certainly I can't look at any of my crts for more than a second or two. Well, now that I've caught up with the actual time, I can stop killing myself and figure out how to get this from my laptop onto my website. Hooray for Ricochet modems...
Well, I tried a couple of experiments last night. I went without Tylenol, and took my usual Zantac to prevent acidic stomach troubles. Unfortunately, the Zantac dried out my eye. As a result, I spent much of the night with an eye that describes itself (continually) as ``irritated''. Not that I didn't get a certain amount of sleep, but it did take longer to drop off. I think I'll stick with the Tylenol and the Tums for now.
The irritation has persisted all day, so it could just be par for the
course. I do think my light sensitivity has decreased a little--I was able
to move from room to room with a little less agony, and I managed to feed
my fish all by myself today, which is quite a trick given how actinic the
fluorescent lights on top of the tank are. I also managed to unjamb the
printer for my daughter, so I feel a small sense of self-worth.
Gloria has been doing double duty, of course. I'm surprised she's holding up as well as she is. She made an interesting mistake this afternoon--saw a big tub of cat litter on sale for the price of a small jug, and bought it. She got home and only then realized that I wasn't allowed to carry in anything that heavy. (Not that I'd go outside either without great provocation.) Anyway, the family managed to get it in somehow, but it was a big production. I'd say Glo probably learned not to buy tubs of litter that big anymore, but by the time that tub runs out, I should be out waterskiing.
I have my own productions to go through. Putting in eye drops is one of
them. I've found that if I carefully balance out the light in the room, sit
in my comfy chair for five minutes getting used to the light, wait till my
eye feels like it's between ``crying jags'', and then slowly ease my eye
open with two fingers, I can get a drop of antibiotic into it without
starting to bawl, which would be counterproductive. Then I have to do it
all over again for the second drop, this time of steroids. (You have to
wait a while between drops or the one drop washes out the other.) Each time
the drop hits my eye I go into a micro-shock. This two-drop regimen happens
four times a day, like an impossibly slow water torture. So my comfy chair
really is a comfy chair.
Today I'm just starting to be able to read my crt monitor a little (with my good eye!), if I cover the entire screen with a single white-on-black window. I can only do it for a little bit of time, but I had the privilege of answering an inquiry from someone who's mother is having a transplant in a month. Fortunately, I'm reading my mail with trn, which groups messages by subject, so I can pick and choose, since I can only read a few messages. But it's nice to be able to do a little. I'll take what I can get. Or maybe it's more like, I'll give what I can put.
And maybe one of these days I can go back and read what I've written so far
and fix some of the less endearing typos.
The wonderful smell of sausages and mushrooms is beginning to waft my way from the kitchen. No, I didn't identify it by smell--my temporary blindness may have a few small advantages, but an increase in my other senses isn't one of them. Rather, Gloria told me beforehand that we'd have sausage and mushrooms. But I really don't mind the smell. A little redundancy is a good thing.
But before I have sausage and mushrooms, it's time once again for the comfy chair.
I slept well last night with just Tylenol at dinnertime, didn't need any antacids. But I'm having a rough time this morning. The photo-sensitivity is, if anything, less, but the raw pain seems to be peaking. (I hope it's peaking.) The eye feels like it's under or over pressurized--if I squeeze it accidentally from, for instance, a yawn, it hurts a lot more. Plus there are little sharp shards of pain in the lower eyelid and inside corner--I don't know whether there's anything really there or if it's just a side effect of something else like the steroids. It could also be the spots where they stitched the ``scaffold'' to my sclera, I suppose.
It's taken me half an hour to steel myself for the first eyedrop. I chickened out and rinsed it with some artificial tears first in hopes that it would clear anything out that might have accumulated during the night. Now that I think on it, I did awaken Glo once to check to see if my bandage contact lens had slipped in the middle of the night, and she said it hadn't, so I must have been feeling the same thing then, only at that tim I figured the contact lens had folded itself up in my lower eyelid. But it hadn't.
Anyway, I broke down and sent Glo in to pick up the Tylenol with Codeine prescription. I managed to get my first drop in and pour myself a cup of coffee, so now I'd better go do my second drop. Sigh. Feels like a bomb going off when it hits.
Well, my second post-op appointment is today, and the doctor will tell me everything is going just fine. So I guess I won't fret.
Did I mention that I'm starting to feel the effects of the steroids? I've had them before so I know what to expect, but it's still a little disconcerting to get these little adrenalin surges at unexpected moments, and feel like swatting your kids into next week for no good reason. I got up from dinner last night and my heart started racing at about 130. Oh well, I've been here before. And it won't last forever. And maybe it'll grow a little more hair on my chest.
I've put off that second drop long enough now...
[Later] I think I'm really doing better in many ways. I did have some pain earlier, but then I haven't had any Tylenol since last night. The little shards of pain in my lower eyelid didn't continue after I rinsed my eye out with artificial tears, so it was probably just ``sleep'' in my eyes. I took a walk around the block before lunch, clutching my wife's arm, of course.
Anyway, I'm back from my checkup. And yes, Dr. V says I'm doing pretty well. My epitheliem is all filled in now. Interestingly, I think I could tell that from the inside when he was looking from the outside. Two days ago when he put the fluorescent stain into my eye, there were large patches of chartreuse light (my favorite color). Today I didn't see any of that, just the deep violet of the ``black'' light.
And I managed to keep my eye open during the exam with only about one tear, and no topical anaesthetic. That's progress, folks.
I do have a bit of inflammation and iritis, so I have to go to six drops a day of steroids, either PredForte or Vexol, my choice, depending on whether I think I can cope with the PredForte, which is stronger. If it were just for the hair on my chest, I could certainly use the stronger one, but we'll see how it goes. I think that for now I'd better go real easy on the caffeine, and avoid stress. Not that I haven't always been known to avoid stress whenever possible...
The Tylenol with Codeine has been doing wonders. No, I haven't taken any of
it, but the threat of having it handy has made me feel ever so much better.
I tossed and turned a lot last night, probably for multiple reasons. First, my steroid dose is higher, and that tends to rev up my metabolism. Second, I've been napping a lot, so I probably don't need all that much sleep. Third, the tape that holds my metal eye shield on my face was threatening to come loose, because I'd reused it one time too many. Fourth, my new antibiotic (started yesterday) is ciprofloxacin, which tends to block caffeine metabolism, so if there was any residual caffeine in my system, it would tend to stay there. Fifth, I took no Tylenol at all yesterday, so there was a low level of pain all night. Finally, Glo got me The Thirty-Nine Steps on audio tape from the library, and I listened to the first half right before I went to bed. As a result, my dreams were all of the being-pursued variety.
Nevertheless, I applied an important principle. Even if you can't sleep, you can rest.
I think I detect a trend on the morning thing. Basically, mornings suck. Well, yes, mornings always suck, but these morning are suckier. I didn't have the sharp pains in my lower eyelid this morning, but I did have the feeling of pressure, which, thinking back to my days eighteen (18!) years ago of wearing soft contact lenses, feels exactly like when I slept in my contact lenses accidentally. Hence, I suspect I'm just feeling a bit of oxygen starvation (or maybe edema) from the bandage contact lens. It's supposed to be thinner and more permeable than an ordinary soft lens, but I had to quit wearing contact lenses long ago because I had weird proteins in my tears that accumulated on the lenses, so maybe the same proteins are plugging up this lens a bit.
Anyway, if I rinse out the eye with some artificial (and some natural) tears first thing, then after fifteen minutes or so I can put in my first medicine of the day without it washing right out again.
Things are definitely improving. Most of the time I don't have to worry about light levels, though I still have to wear my dark glasses when the sun shines in my bedroom in the morning. (My bedroom has a lot of glass facing east and south.)
But the big news of the day is that I can keep my right eye open for more than a brief moment now. (I have it open now.) I was starting to experiment with opening my eye earlier this morning, when an interesting thing happened. I have my computer sound an alarm if it thinks my phone lines have been cut, and it started sounding the alarm intermittently. As it happened, there weren't any robbers out behind our house in the process of cutting our phone lines. (Did I mention I'm paranoid?) But I knew our phone lines go through the back yard of our neighbor, and I could see he was doing something back there, moving rocks around or something. After I'd been watching him for a couple of minutes, I realized with great startlement that I'd been watching the whole time with both eyes open! And my ``bad'' eye wasn't watering excessively. By the way, it looks like my neighbor is installing an irrigation system. The phone lines are still working, for the moment, but we'll see (literally) whether that stays true.
The vision is still not great in that eye, maybe 20/80 or so, but if I look at a point source of light, the point spread function is approximately gaussian and fairly symmetrical, which indicates to me that the tension is fairly even across the cornea, and there's little incipient astigmatism. Waving various lenses before my eye doesn't seem to change it much, so it's probably just the sort of thing that takes months to settle down. Edema, or second-order distortions, or something.
I did have one little scare last night. I was putting on my pajamas (just some sweats, basically), and I said to myself, ``This collar is kind of tight. You whacked your eye a month ago with this, so be careful you don't whack your eye again.'' So idiot that I am, I immediately let the collar slip from my grasp and whack the eye. It hurt a lot, but I looked at my point source of light, and it indicated that nothing had shifted, so I didn't worry. I will definitely put on my metal shield before I put on my pajamas tonight, though.
Well, back to that comfy chair again.
[Evening] I tried a little experiment to see if the way I feel from the steroids is allergy related. I took a half dose of antihistamine. The antihistamine made me sleepy, but my heart was still going thump, thump, with occasional skipped beats. So whatever is going on, it's probably not mediated by a histamine reaction. Which is a relief to know, actually. Had it been histamine mediated, either symptoms would have subsided, or I'd have used up all the antihistamine and stayed alert. I know I'm really being allergic when I take a full dose of antihistamine and stay wide awake.
I'm not too concerned about the skipped beats--I know they can cause me little panic spells but are not particularly harmful beyond that. So I've taught myself not to panic over my panics. So to speak.
What is probably going on is some kind of high blood pressure. My resting heart rate stays at 90 to 100 beats per minute, and it really thumps like it's working hard. So I'll go real easy on salt as long as I have to take the steroids, and probably drop the caffeine entirely. (I've been having a cup of tea each morning.) And maybe I'll get Glo to take me by the drug store tomorrow where they have a blood pressure meter. I'd like to see if I'm right.
Hey, if you're gonna be a hypochondriac, you might as well get some fun out
So far, so good. I'm more than halfway through the day, and haven't had a racing pulse. So by avoiding caffeine, salt, and carbohydrates (I threw that in to make it hard), I seem to be avoiding most of the problem. I think I can keep using the stronger steroids for now without thinking I'm gonna die. I much prefer a pulse of 70 to a pulse of 100.
Two interesting stories. This morning I went to take off my metal shield (actually it's half rubber, around the edge), and scraped my eyelid with my thumbnail. It hurt a little, and it occurred to me that it would have hurt a lot more if I'd been just a millimeter closer. So I immediately resolved to do the smart thing, and trim my nails. Half way through, one of the parings leaps straight off the clipper into my eye. Fortunately it was the ``wrong'' eye, that is, the left one, but of course I blinked really hard, and that hurt my right eye. Made me feel like a self-contained Rube Goldberg machine. Lesson for the Day: Put on your glasses the moment you remove the metal shield. Even if your nose is still gooey from the tape...
The other incident happened a little later, when the sun was shining brightly into my bedroom. My comfy chair is actually my computer chair, so when sit in it, I'm actually sitting at my computer. I think I mentioned my vision is about 20/80, but this actually varies considerably depending on the size of my iris. Well, the room was quite bright, and I glanced down at my keyboard. I was delighted to see the keys standing up a couple of miles higher than the keyboard. Way cool. I can't see it now while I type this, but the light is dimmer and coming from above. But I'm very encouraged. At times I definitely see better than I did before.
I've had a nasty headache all day, but so what? I'm still happy.
Today I hauled out my little book of stereograms and was pleased to be able to see about half of them in 3D, even with my fuzzy eye.
Otherwise, today was pretty much a repeat of yesterday, physiologically speaking. I added back in some carbohydrates, and they don't seem to have affected me, so it looks like cutting down on salt and caffeine is sufficient to keep the ``thumps'' away. I am reminded of Mark Twain, who when he got sick was told by his doctor to quit smoking, drinking, and swearing. He did, and got better. Afterwards he started smoking, drinking, and swearing again. When his friends asked him why, he said, ``You remember the righteous lady down the street? She didn't do any of that, and when she got sick, she didn't have any reserves. So she died.''
So I intend to take up salt and caffeine again after I get better.
Woke up this morning with a lot of irritation and headache, but a couple of Tylenol fixed that. I'm off to my one week checkup...
Well, well. The joke of the day is on me. Actually, it's the joke of the week. I went to my checkup, and found out from Dr. V. that I don't have a bandage contact lens in my eye. I did at first, but it dissolved within the first 24 hours. (Intentionally, I might add. My tears aren't that corrosive.) So all this time I've been thinking that I was feeling a lens sliding around in my eye, I've just been feeling my eye sliding around in my eye. Or something like that.
On a less hilarious note, the eye looks to be making good progress, even if it doesn't always feel like it, and I can now start doing ordinary things if I feel up to them, like driving. But I don't feel up to that quite yet. On the other hand, I'm already doing a certain amount of reading. The light sensitivity is mostly gone, but the irritation will take a little longer. The doctor feels the current dosage of steroid and antibiotic are just about right. So I just have to wait some more. This is not unexpected...
I'll probably start reporting a little less often now, unless something significant happens. My next appointment is in six days.
I'm doing a little better each day. I can now sneeze without feeling like my eye is going to explode. I've driven several times now. The first few times I regretted it, but I'm doing better on that now too.
One interesting thing that happened during the last week was I could actually get enough light into my eye to look at it myself in the mirror, and I saw a red streak about 2 mm long along my suture. I was worried that it might be bleeding, so I called into the office. But the doctor had seen it in my previous appointment, and said not to worry.
My appointment went fine, and I'm now back down to four drops per day of steroid, two of antibiotic. I may be imagining it, but my eye feels ``tired'' as I'm approaching the time for my next drop. I've noticed this when cutting down on steroids before.
I suppose the biggest irritation right now is that I've been feeling pretty
low, and having a headache every afternoon. The headache can be dealt with
by Tylenol and rest, but I suppose the low mood is a combination of many
things: no caffeine, effects of the surgery, effects of going on and off
various medications, getting my sleep cycle screwed up, the short days, the
stormy weather, and the fact that I haven't been exposing myself to a lot
of light in any event, and finally, the fact that I'm falling behind in
many areas that I usually keep up in. Or at least don't fall behind so fast
But I can still make jokes, so I must not be that badly off yet...
I feel much better this week. Could have a lot to do with deciding to have one cup of tea in the morning. I get occasional ``thumps'' but it's worth it. The discomfort in the eye is almost gone now. I can drive all over, even with the glare of the sun off the road. (Still wearing shades, of course, but then I'd wear them anyway.)
The vision in the eye is still pretty rotten, (20/100 corrected, but it's hard to correct it when I'm seeing multiple images), but the cornea is thinning out nicely. Nobody really understands the process entirely, but basically the cornea thins out at different rates in different spots, and about three months in, a lot of people suddenly find that everything ``evens out''.
I do find that I can actually read pretty clearly with the eye at a distance of 3 or 4 inches, so it's possible that the distortions that make multiple images at a distance don't do that so much up close. My next appointment is in three weeks, and I get to drop down to 3 drops of steroids after about two weeks. I'm looking forward to that, since that's about the threshold at which the steroids induce the stress reaction.
So far so good. As far as comfort goes, my right eye feels just as good as my left eye, unless I really overdo it. I drove all the way to Eastern Oregon and back, and it wasn't too bad.
As expected, the vision is still pretty rotten. I amused myself on the drive back trying to figure out how my cornea must be shaped to produce the particular distortion I see. What I see, if I look at a point source of light, is the top quarter of a circle. So basically what I have is an astigmatism that spreads the light out left and right, with an additional top to bottom asymmetry that bends the ends of the line down. (Or the middle up, depending on how you think of it.)
At least it's consistent now. Two weeks ago the image was still evolving from day to day, but now it's pretty stable. The most spectacular difference is between day and night. If it's dark and my pupil gets really big, I can see all sorts of extra distortion filaments around the basic arc. Presumably this is from the stitches around the edge of the graft. It almost seems as though I could count the stitches from the image, but that's probably bogus, since each stitch is probably sending light multiple ways.
Still and all, I continue to see better with that eye than I did before the operation, so how can I complain? I'm getting good at waiting.
Everything goes along pretty much as it was. I'm still on 3 drops a day till the end of March, when I can drop down to 2. The doctor is trying to get me off of them as fast as reasonably possible since I've had plenty of steroids over the course of my history, and there are correlations between steroid use and cataracts.
At my last appointment (which was actually a couple of weeks ago) I found out that most of the current distortion is actually caused by a single tight stitch. It's near the bottom (the one at ``105 degrees''), which is why I get the left-right astigmatism with the downturns. It makes my cornea have a conic component as well as ellipsoidal. At my next appointment in three weeks (T+11 weeks) they'll do a ``topography'' of the cornea by seeing how light reflects off of it, and then maybe start taking a stitch or two out to regularize the shape. Starting at about 6 weeks is when the collagen starts to form to ``stitch in'' the cornea naturally. I know that in some cases, once a cornea gets into a decent shape, the doctor just leaves the rest of the stitches in, since they don't bother much of anything.
One thing Dr V found encouraging at the last appointment was that, even though I focus on vertical lines at about 3 inches and horizontal lines at infinity, on the average, that just about the same nearsightedness as the other eye. He thought about that a bit, then asked whether I still had the old lens that was on the right side of my glasses before I switched to ``plano''. And that I might try that to see if I could see better.
I told him I'd already tried it. He looked at me, grinned, and said, ``You would.''
In any event, I'm not using the old lens at the moment--it just makes it blurry in both dimensions without really fixing either. And I'm used to checking for changes in my vision against the current distortion. (One of the warning signs of rejection is changes in vision. There are four warning signs, actually, Redness, Sensitivity to light, Vision changes, and Pain. RSVP for short.)
Fortunately, the only ``symptom'' I have in my eye so far is Itchiness, which is indicative of allergies, and nothing else. I find it vaguely reassuring that my other eye itches just as much.
Hmm, I'm overdue for an update here, I see, so some of this is almost ancient history. Just be glad that I didn't wait for 13 weeks, which is the next Fibonacci number...
Had a good scare a couple weeks ago, when I flew up to Seattle to give a talk at the XML Developer's Day. When I got off the plane, a compatriot noticed that I had a red spot in my eye. I said that my eyes often got red from allergies, and didn't think much more about it till that evening, when I looked into the mirror and realized I had a brilliant red spot, swirly on the edges, stretching from directly under the cornea to the outside corner of my eye, and about a quarter inch high. It was just barely touching the cornea at the 7:00 position (5:00 to me, looking in the mirror.) Of course, the first thought that leapt to mind was that this was the Redness of the RSVP mnemonic, and that I was starting to reject the cornea. This was about 11:00 at night, so I called the doctor's office to get to the answering service, which referred me to the eye doctor on call (I forget her name). After I described the symptoms, she thought I'd probably just broken a blood vessel in my white of my eye, but that I should double my steroid drops to six a day just to be sure.
Well, that was a relief. However, I had a sneaking suspicion that Dr. V might not want me to increase my steroid drops, since he's been trying to get me off the steroids as expeditiously as possible. In fact, I was supposed to be dropping down to two drops a day several days after the conference, not going up to six drops! (Also, it seemed to me that the steroids could well be contributing to weakening the blood vessels in the first place.) Fortunately, the first ``extra'' drop wouldn't happen till noon the next day, so I called in the morning and, as I suspected, Dr. V kept me on three drops a day. He allowed as the broken vessel was probably caused by me letting my eye get dried out on the airplane. So I watched it carefully the next few days, and when I flew home, kept my eye well lubricated. There were no further breakages. The spot spread out and faded over time, so I dropped to two drops a day as scheduled.
And as usual, I did notice that my eye seemed a little more irritable when I dropped the dosage, but the spot continued to fade. It was entirely gone by the time I had my eye appointment last week, and I've gotten used to being on two drops a day, so we did the right thing. Whew.
As expected, at the appointment they did a ``topography'', and then Dr V removed a couple of stitches to work on improving the ``sphericity''. (His assistant was amused by that word, for some reason, and made him repeat it.) He said they usually didn't start this till three full months had passed (still another week from now), but that my cornea was probably healing more rapidly than usual because of the extra blood vessels around the edge. So out came two stitches, and nothing untoward has happened. Unfortunately, nothing much ``toward'' has happened either--I haven't noticed any major change in the distortion yet. Maybe the curve of the distortion is a little flatter, but I still see something rather banana-shaped when I look at a point source.
But hey, now that I'm down to two drops a day, I can have a sufficiency of caffeine without getting the dreaded ``thumps''. It's nice to be awake occasionally.
I got my second pair of stitches out today, and I've already noticed a difference in how the distortion is shaped. It changed from mostly banana shaped to mostly bow-tie shaped. That is, it's getting more symmetrical. That's really good, I think, because it means I'm closer to having a distortion that is correctable with a lens. When I look at printing 3 inches from my eye it looks even better than it did a few days ago.
On the down side, my eye pressure is up a bit, probably due to steroid use, so Dr V is taking me down to one drop of steroid a day, and adding a drop per day of something that will reduce the pressure in my eye.
I also broke another blood vessel (or maybe the same one) in my conjunctiva on Saturday, but this time I didn't even call the doctor about it. I spotted it early enough that it was obviously not related to the cornea--it started as a spot a good quarter inch away from the cornea on the outside corner. Interesting that the general flow of the leaked blood goes from the outside of the eye toward the inside--the outside is already white again but the red is mostly straight down from my cornea now. Anyway, it probably happened because I watched the Mountain View parade, and it was breezy and warm, and dried out my eye too much. I'm also watching my blood pressure to make sure that's not the cause of it. (A couple of months ago when I was having the ``thumps'' I went out and bought a cute little finger-cuff blood pressure unit that seems to do a pretty decent job.)
For it, that's now.
A month has gone by. (That was quick. Having a vacation to Germany and Austria in the middle helps, I suppose.) I had no trouble with broken blood vessels this month, despite flying to Europe and back and spending a lot of time outdoors in the breezy Alps. Of course, that could be because I kept my eye soggy most of the time.
On the other hand, the drops I'm taking for eye pressure also happen to reduce blood pressure. So who knows?
Anyway, you may remember that I mentioned that, for many people, things suddenly start getting better after three months? Well, it took me four. But I always was a late bloomer...
In my eye appointment last Friday Dr V found that he could now correct my vision to 20/40, which is a vast improvement. I'm still very near-sighted in the eye (more than twice as much as before), but the astigmatism and distortion are both decreasing, due presumably to the earlier removal of stitches. After I tested to 20/40, Dr V removed one more tight stitch and sent me home. I'm still taking one daily drop of PredForte (the steroid), and one drop of Timoptic (timolol, a beta-blocker to reduce IOP (intra-ocular pressure)).
Over the course of the month, the distortion had gone from looking like a bow tie to looking more like a dog bone (with the usual confetti around the edges when my pupil is large). After this last stitch, the dog bone suddenly became a fairly round blob (which, when combined with the usual confetti, now looks like a Disney octopus, with the legs coming out from underneath and swirling up the sides). But the main blob is starting to focus really well. So well, in fact, that I can read the fine print on a pink saccharine packet. Though, of course, only at a distance of three inches.
But since the astigmatism is so much better, it occurred to me that I might now benefit from sticking my old lens into my glasses. When I do, the eye now focuses at a distance of about 10 inches, and I can now see nearby things (like my fingers) in 3-D. Even that took a while to get used to--I was seasick for a couple of days, probably because one lens is progressive and the other isn't. And it's still less than half the correction needed for that eye. When I hold my other old lens (about the same power) in front so that I'm using two lenses, I focus at about two or three feet away.
Now allow me to point out that, without glasses, my good eye focuses at about 10 inches. Which means that, if I take off my glasses and hold a lens in front of my bad eye, I can focus both of them at 10 inches! It suddenly occurred to me that that's about the distance that you hold the pictures in my 3-D book in order to see the effects. So I picked up my book, and proceeded to see every picture in 3-D! I was so excited that I did the book again the next day. And the next.
Hmm, I think I'll do it again today. Just for practice...
I'm overdue to report here, but that's actually a good sign. Boring is good, when it comes to eyes. I've worked my way down to three drops a week of Loteprednol, a fairly weak steroid. I only got scared about graft rejection once, when my vision got a little blurry and my eye was getting bloodshot. But I looked more carefully, and I saw that my good eye was just as red as my bad eye. So it was just allergies. I was fine next day.
I've had a new lens in my glasses now for about a month. It's pretty thick (7.5 diopters), though it'd be a lot thicker if I hadn't got the high index plastic. With the new lens I see about 20/40 in that eye. That 20/40 is actually an average value--it's better in bright light, and worse in dim light. There are two reasons for this. First, you get a sharper image from any camera if you stop it down. Second, there's more distortion from stitches at the edges, so when the pupil is larger, one is looking through more distortions on average.
Someday we might try to do better with a contact lens or even laser surgery. Dr V figures a hard contact lens would take me to about 20/25. Or we might try a LASIK. That'd be one large insult to the eye, rather than a lot of little ones, which is what a contact lens amounts to. If we do eventually use the laser on that eye, it wouldn't be till a year had passed after the transplant. Meanwhile, I'm still getting used to looking out of both eyes.
This is a bit difficult because the two lenses in my glasses are so
different from each other. Dr V says it's right on the edge of what people
can tolerate, but he thinks my brain is fairly adaptable. I'd like to think
it is too.
:-) I think I'm managing it, but I've discovered there are several different
components to ``getting used to it''. The easiest part was retraining the
circuitry that points the eyes in the right direction. I learned that in
just a few days. You can tell when you've learned that by taking your
glasses off and turning your head back and forth. If you're adapted to the
glasses, the world will appear to move back and forth, since you're brain
is used to compensating for the shift in images when you look off-axis.
Another fairly easy thing to learn to fuse two different images of something into a single image, when the image from one eye is considerable smaller than the image from the other eye. But that wasn't too hard. Apparently it's just a matter of shifting the signals over by a few neurons here and there. Think of it as a kind of digital zoom.
The next hardest thing to learn is depth perception. Perhaps it's because I didn't have depth perception for many years. Now I have depth perception, but it's wrong. Again, it's related to the shift in images when you look off-axis, but in this case, since your eyes are aimed inward to get parallax, it's the relative angle of the two eyes that's the problem, not the overall angle of both eyes. Anyway, I'm getting use to that too now.
The part I'm still having trouble getting used to is estimating the sizes of things. If your brain knows how far away something is, it can estimate its size by knowing the angular size of the image. I find that my brain is still giving me two different estimates of size simultaneously. I notice this particularly when I'm thinking about making a right turn, and wonder if I can squeeze between the cars and the curb. One eye says yes, and the other eye says no. One eye or the other is lying. Sometimes it's a long, drawn-out mental process to determine which one is telling the truth. Sometimes I just decide to be patient. I've had a lot of practice waiting, after all.
My next eye appointment is in three months. Check back here at Thanksgiving, and see if I'm still thankful.
I'm finally off steroids, as of a week ago. Yay! My eye felt some withdrawal symptoms during the week, and seems to be a little more sensitive to allergies now, but so far no signs of rejection. Since this was the last decrease in steroid dosage, the statistics for rejection should only get better from here on out. Though of course the chance of rejection never goes entirely to zero. Consider how many people have unfortunate immune reactions to their own tissues.
I just had my latest eye appointment, and everything looks good. My vision is still stable, 20/40 or so in the right eye with glasses. I'm pretty much used to the glasses, though I still take them off if I'm doing a lot of reading. (I'm just a little nearsighted in my left eye, which is perfect for reading.) Dr V thinks that my right eye can be corrected well enough with a rigid contact lens to enable my right eye to specialize in things far away while my left eye specializes in things close by. Then I might not need glasses at all. Just one contact lens.
But we'd already decided that we wouldn't try anything like that till T+1 year or so. I'll have been a few months without steroids by then, so things should be quite stable.
In any event, I am quite happy with how things have turned out, and will
have no difficulty giving thanks on Thanksgiving. And whether or not today
is Thanksgiving, I'd like to thank you all for your prayers and good
wishes. Sometimes I think I have more friends than I deserve.
Well, it's been a while, hasn't it? Today is the 20th of January, two years to the day since my surgery. And there's a reason I haven't written anything for the last year or so: I didn't have much good news to report.
About a year ago (T+1 year), I went in to try out a contact lens, and it didn't work very well--I only got about 20/40, because the stitches were distorting things too much. The doctor felt the improvement wasn't worth the risk and agony of a contact lens. On top of that, I was starting to grow a few blood vessels toward the graft, so I had to start putting in a low-level dose of steroids again, two drops a week. Not enough to create any systemic effects, but still a hassle.
I went home rather discouraged, as you might imagine.
Several days later, I felt a sharp pain in my eye and the vision changed somewhat. If you'll recall, that's two of the four symptoms of graft rejection. Yikes! So I got myself into the doctor double-quick. (Fortunately I wasn't in Seattle this time.)
But it just turned out to be a broken stitch that was poking straight out and scraping the inside of my eyelid. Dr V pulled the stitch and everything was fine, just dump some antibiotics into my eye for two days.
Then it happened again, about a month after that.
Then it happened again, about a month after that.
You'll notice a trend. So did Dr V. He scheduled me to get the rest of my stitches out in the middle of the summer.
A couple of weeks before that, I was scheduled to fly to Pittsburgh to give a talk at YAPC (Yet Another Perl Conference). The night before my flight was to leave, I broke another stitch. By now I was an expert on broken stitches, and knew what was going on. I didn't have time to get into the doctor before my flight left, and I'd had a terrible time booking that flight, so I had to catch it. I bought some really gooey artificial tears, loaded up my eye with it, and got on the plane.
First stop, Chicago, four hour layover. I can tell you for a fact that O'Hare Airport has four doctors in their medical facility, and that none of them is an ophthamolgist. I can also tell you that gooey tears are very gooey, and you shouldn't take them anywhere without also taking some facial tissues. Purloined toilet paper just doesn't cut it.
I finally got into Pittsburgh late that night, and discovered that the airline had lost my luggage. I got checked into the dorm at Carnegie-Mellon where the conference was to be held, and since it was too late to look for an eye doctor, dumped another dose of gooey tears into my eye and went to bed in my travel clothes. The next morning I discovered that my luggage still hadn't arrived, which was a problem because the luggage contained some props I wanted for the keynote speech I was going to give. Fortunately I had the programs I was going to demonstrate on my laptop with me, so you can picture me giving my talk in the grody clothes I'd been wearing for more than 24 hours, with one I glued shut, giving a guided tour of some programs I could show on the screen but couldn't demonstrate. Fortunately I was among friends, and they laughed at all the right jokes.
Afterwards they said they'd get me to an eye doctor. Funny how these things escalate--next thing I know, I'm being driven to the hospital by campus security. I keep telling them it's just a broken stitch, and I've had them before, but I think they think my eye was going to fall out or something.
Anyway, after the usual interminable emergency room wait, I finally got to someone who knew how to run the ophthalmoscope. He worked a long time on the broken stitch, partly because the knot was buried deeply, and partly because he was (I think) only a resident, and I might even have been his first busted cornea stitch. He seemed rather nervous, anyway. He tried and tried to get it with the tweezers, and it just wouldn't tweeze. Finally he called for a really sharp needle, and dug it out. Yow.
Afterwards the ``real'' doctor came in and double checked me. Double yow.
(The bills for that are still trickling in. Triple yow.)
A couple of weeks later, Dr V pulled most of the rest of the stitches out uneventfully. He left two in that were buried too deep to bother with.
After losing all these stitches, my astigmatism became even worse, and my glasses weren't really doing me as much good as they had before. I couldn't really get more astigmatism correction in my right lens. And in fact, I was already getting tired of the wicked astigmatism correction I did have, because it made my steering wheel look like an egg. But there really wasn't anything to do about it at that point. A larger correction wouldn't have helped much, because the distortion I saw when I looked at a light was shaped like a banana. No combination of spherical and cylindrical correction can turn a banana back into a point of light. The shape of the cornea was just too complex for that, with one quadrant of it being flatter than the other three.
Then last fall, I broke another stitch (it seemed), so I wandered in again. It was Dr V's day at surgery, so I finally got to meet his partner, Dr Beers. Turned out it wasn't a newly broken stitch, but a piece of an old one that had got left in and worked its way loose, and was scraping up my eyelid like your everyday run-of-the-mill broken stitch. So I still have two stitches. Since Dr B is not Dr V, they scheduled me for a checkup with Dr V.
At that checkup, I complained (a little) about the astigmatism, and Dr V looked thoughtful, and said that maybe now that most of the stitches were out, things would be different with a contact lens. He called in another of his partners, Dr Trainer, who specializes in contact lenses. They put some test lenses in my eye, I didn't do too badly. They scheduled me for a real lens fitting, and when I came in for that, I got up to the 20/25 line, give or take a few letters! So we ordered the lens!
You might be wondering how a contact lens would help when ordinary glasses can't. They used to think that a rigid contact lens shaped the cornea, but that's not actually what happens. The cornea stays the same shape, and the contact lens stays the same shape (if it's a rigid lens), but that means that there are gaps between in the spots where your cornea is flatter than the lens. Those gaps in between fill with fluid. The important thing about that is that the refractive index of your tears is rather close to the refractive index of the lens (at least compared to air), so it's as if you had a form-fitting contact lens, as long as your eye stays moist enough. In my case, it reduces the tremendous distortion to a barely noticable double image when I look at a distant light.
So for the last month or so, I've been wearing my new RGP (rigid gas-permeable) lens, and have worked up to wearing it all day. It completely covers the graft, so there are no problems with it catching on the edge. I see 20/25 in daylight, a little worse at night. Actually, the center spot is just as well focused at night, but there's more flare around the focus because the iris is wider and the edges of the graft are more irregular. Basically, in daylight, everything looks like it was photographed through a soft-focus lens.
But I'm tremendously happy with my new contact lens. When I look at my 3-D stereogram book now, I see things that I didn't see before back when I thought I was seeing everything.
I took out my old clunky right lens from my glasses and put back in the plano (non-correcting) lens I'd used back when it was useless to have any correction. Only now it was so I could see with the contact lens. It took about a week to get used to not wearing the clunky lens. I spent most of the week with a migraine as my brain was rewiring itself. But now I'm fine.
There's an odd thing, though. When I take off my glasses now, I can see better with my right eye than with my left. You can't imagine how weird that feels after spending the last 15 years learning to ignore my right eye. I still giggle when I go around the house without my glasses on, and I can now actually find my glasses without my glasses, so to speak.
What I can't yet do very well with my contact lens is read. The lens corrects for distance, and I'm getting old enough that distance correction is mutually exclusive with reading correction. So, finally, now that I've settled in with the contact lens, I'm getting a new prescription for my right glasses lens that has a progressive correction matching my left lens. I'll be able to read with both eyes for the first time in 15 years.
Thank you, Dr Volpicelli!!!
I've had enough practice waiting. I am going to practice seeing now. Just you wait and see!