by John Ackermann
Updated: December 11, 1998
December 2, 1997 -- On October 2, 1996, I had a cornea transplant in my right eye. To see my diary of that experience, and learn a bit about my history, click here.
Tomorrow I'm having a transplant in my left eye, which was less affected by keratoconus than the other one, but still had only 20/50 vision when corrected with piggyback soft and hard contact lenses. Since my diary of the earlier operation and its aftermath is pretty complete, this diary will probably be shorter and will focus on the differences (if any) betweeen the two experiences. Stay tuned...
(And please forgive any typos in the earlier entries -- they're being typed under less-than-ideal circumstances.)
December 3, 1997 (written December 4) -- I arrived at the hospital at 6:15 for a scheduled 8:15 AM surgery, and by golly things happened just about on time. Again, I was by far the youngest patient in pre-op, and again the fellow on the gurney next to me was 84 and fairly hard of hearing, so I got to hear every exchange between he and his attendants several times. Everything went fine, I ended up in post-op at about 10:00, and was released to go home at 11:30.
I asked the pre-op nurse about the general versus local anethesia question. She said that nearly all the doctors who operated at the hospital preferred to use a general anesthetic for cornea transplants, though they used locals for nearly everything else. Since the information on the keratoconus mailing list suggests that in most places the surgeons use locals for transplants, I wonder if there's a regional preference?
I had no pain at all in my eye today, but spent most of the day and night in one or two hour catnaps -- I wasn't able to sleep, or stay awake, for longer than that at a stretch.
December 4, 1997 -- I had a followup visit with Dr. Bullock this morning. Everything looks fine. For what it's worth, Dr. Warwar, Dr. Bullock's resident, commented that my ability to see even the big "E" on the eye chart the morning after surgery was quite unusual. Hopefully that's a sign of good results to come...
Dr. Bullock was very happy (and I think relieved) when he looked at my eye. Apparently my pupil and my cornea are off center with respect to one another, and he had some difficulty working out the proper centering of the graft. Then had some mechanical difficulties during the cut. To make things worse, when the cutting begins the eyeball loses pressure and sags inward, making it more difficult to judge how the graft is centered. Without going into more of the gory details, I'll just say I'm glad he knows what he's doing -- this surgery through a microscope must be incredibly difficult! His verdict on looking at the graft this morning was that it was perfectly centered, so all is well.
I mentioned to Dr. Bullock that I thought the Ciloxan antibiotic drops I used last year were the cause of much of the light sensitivity and burning that I had to deal with. He prescribed Tobrex; I've used it in the past for abrasions, and it didn't cause any irritation then, so hopefully that's one problem I'll be able to minimize this time around.
December 5, 1997 -- Had an excellent day today. For practical purposes, no pain, minimal watering, and no photophobia (light sensitivity). I was able to get quite a bit of computer work done in one-half hour chunks. I almost felt guilty about not going in to work!
I'm also pleased that what I suspected all along appears to be true -- I've always felt that beneath the fractured images and distortion caused by the keratoconus, I was significantly less nearsighted in my left eye than in my right one. Today, if I look out both eyes with no correction, the new left eye is significantly sharper than the right one -- it's still something like 20/400, but it's clearly the better of the two. Another interesting thing is that the spectacle lens that used to give me at least some vision in my left eye (probably 20/100 or so) doesn't seem to help at all -- in fact, the vision is almost the same with or without the lens in front of the eye. There must be some optical work that the new cornea just isn't doing yet. I'll be very interested to see how the vision improves (or doesn't...) over the next days.
The Tobrex antibiotic seems to be the ticket for avoiding much of the burning I had last time. It seemed completely benign when I put it in this morning and tonight.
December 7, 1997 -- Things are continuing well. I'm waking up perhaps twice each night due to tearing from my eye, but I don't think the watering is nearly as bad as last time. And, during the day I scarcely notice any discomfort in the eye at all. My biggest limitation is limited vision. Between the left eye doing almost no work at all, and the right one relying on glasses that don't provide the best correction in the world, I'm just not seeing too well.
The glasses are fine in good lighting, but in dim light the combination of glare, flare, and general softness makes my vision a bit shaky. On the other hand, I think that wearing glasses now instead of my contact lens is probably reducing my eye strain significantly. From past experience, a contact-equipped eye doing all the work gets pretty irritated pretty quickly, so it's worth the tradeoff for now.
December 8, 1997 -- I woke up this morning with my lower and upper eyelids both very puffy. Jody suggested I use a cold pack, and that seemed to help a little. A call to the doctor's office indicated that since the swelling seemed to be fluid-related and not inflammation (it wasn't painful to the touch) I could wait until my scheduled appointment tomorrow. As the day went on the swelling decreased, and the eye itself wasn't too painful.
December 9, 1997 -- I saw Doctors Bruchs (my optometrist), Bullock (my opthalmologist and surgeon), and Warwar (Dr. Bullock's assistant) this morning. They each used the slit lamp, I had my intra-ocular pressure tested, and I ended up with a splitting headache. But all is going well in general.
I slept through the night without waking up from my eye watering, and the swelling wasn't as bad this morning. The Doctors think the swelling is at least partly an allergic reaction to the Tobrex antibiotic I've been using, so they took me off that. Now, it's just Pred Forte four times daily in the left eye, along with the every-other-day Vexol in the right eye.
Although I'm reading about the same number of lines on the eye chart with my left eye as I was last week, it's clear that the left eye has much better uncorrected vision now than the right one. I'm hoping that will mean less nearsightedness and an easier correction when we get a bit further down the line.
December 16, 1997 -- Had a followup with Dr. Bullock today. Not much to report -- all is going well and my next followup is in five weeks. I'm to taper off the Pred Forte over the next three weeks until I'm down to one drop per day.
Subjectively, I think I've had significantly less discomfort with this transplant than with the last one. Other than the first night or two, I haven't been kept awake at night by watering, and the general pain level is lower. In particular, last time the whole area of my face and forehead around the eye was sensitive for several weeks -- for example, rubbing my eyebrow would transmit discomfort into my eye. There's basically none of that this time around. I've also had less trouble with eye strain in my other eye (at least so far).
My guess (but remember, I'm no doctor!) is that the antibiotics really were causing an adverse effect, and discontinuing them made a big difference in comfort.
I also think that wearing glasses to correct my other eye -- even though the vision isn't quite as good as if I wore a contact -- has reduced eye strain. The bottom line is that two weeks post-surgery I'm functioning pretty well. I've been back at work on a half-time (actually, a bit more) basis for four days, and I'm surviving that pretty well.
OK, all the positive stuff being said, I'm still not at 100%. My eye does water, particularly in the morning, so I always keep tissues handy. I have a moderate amount of light-sensitivity and being outside in bright winter sunlight is not any fun (fortunately, bright sunlight is not a frequent problem in wintertime Dayton!). I have some difficulty doing things where I have to look up or out -- it's much easier for me to look at the computer screen for a half hour than to watch TV for the same period. Looking at overhead projector slides in a flourescent-lit conference room is definitely not easy. But overall I'm pretty happy with how well I am functioning right now, only two weeks after the transplant.
December 23, 1997 -- Tomorrow marks three weeks since my surgery. I'm generally doing pretty well, but have had two episodes of significant discomfort. I think that something -- an eyelash, perhaps -- has gotten into the eye and triggered a lot of pain and watering for fifteen or twenty minutes, and then a general discomfort for the next day or so. It's very much like when my hard contact lens used to get off-center in my eye and I had to cajole it back into place, and then remove the lens. After that, I was pretty well shot for the day, and this situation is very similar.
The first episode happened last Friday evening, and the second one this morning. I'm pretty sure there's nothing wrong with the new cornea, since the serious discomfort lasts only a short while.
Apart from these bouts, I've been doing pretty well. I've worked anything from six to eight hours per day for the last week, and survived a few more long meetings. I have to admit that the prospect of being on vacation from now until January 5 is appealing, though. I hope that after the holidays I'll be able to return to work pretty much full time, though I'm going to try to arrange things so I don't have to drive after dark, which may mean leaving the office a bit early during these short winter days.
December 26, 1997 -- I had a nice Christmas present yesterday -- my eye stopped hurting! The previous couple of days had been pretty unpleasant, not due to any great pain but because of the constant minor irritation and, probably, some degree of depression at how difficult it's been to do anything for the last three weeks.
But I wore an eye patch almost all day on the 24th, and perhaps that rested the eye enough to recover from the episodes I mentioned in the last entry. In any event, I woke up yesterday morning without any noticeable discomfort and almost no watering. And, my eye still feels good today, so maybe I've turned a corner. I sure hope so.
The doctor has me down to Pred Forte three times per day, and I"ve been using Refresh lubricating drops a couple of times a day to help with scratchiness -- I'm not sure how much good they've done though (others have reported great comfort from using various lubricating drops, but they've never seemed to make much difference for me).
January 21, 1998 -- I didn't realize it had been nearly a month since my last entry. Not too much has changed, but it's time for an update.
I've been working pretty much full-time, and driving myself to and from work, since January 5. I try to leave for home while it's still light, as I don't like driving at night with just one working eye. I'm having some degree of scratchiness in my left eye just about every day, but it's not very consistent -- some days it will be very minor, while other days it's quite bothersome. Either wearing, or stopping wearing, an eye patch seems to help (I know that's not a very useful comment, but it's true -- wearing the patch part time seems to provide the best comfort; I have no idea why.
I'm also having some light sensitivity, but not enough to be very bothersome. It's worst first thing in the morning; I have to face the bathroom lights in stages.
I had a followup visit with Dr. Bullock and team yesterday. All is well. They had tapered me down from three drops of Pred Forte daily to once per day over the last three weeks, and yesterday they switched me over to Vexol once every other day -- the same as in my other eye. I'll be seeing Dr. Bruchs (the optometrist) in a month to get a contact lens fit, but probably won't see Dr. Bullock again for several months.
I've been doing an interesting vision experiment. As my eye has cleared, it's become clear that there's much less nearsightedness in my left eye than in my right; I can see large objects at a distance of several feet quite a bit more clearly than with my right eye. However, the astigmatism is also very noticeable -- if I look at something with two sets of straight lines at right angles, I can rotate it so that one set is perfectly sharp from a couple of feet away, while the perpendicular set of lines is so fuzzy I can't even see that there are lines there.
I'd never noticed this during the recovery from my other transplant. I assume that's because the nearsightedness in my right eye masked the astigmatism so that I was never able to see this effect. Now I just need to keep faith that the left eye astigmatism will repeat the pattern of the right eye and reduce through the rest of the healing period.
March 14, 1998 -- A mixed bag to report about six weeks after my last update.
I've had what seems to me more discomfort and irritation this time than with my last transplant. In mid-February, Dr. Bruchs said it was ok to try wearing a disposable soft lens to help cushion my eye -- there's a dry spot on my cornea near the knot in the running stitch, and Dr. Bruchs thought that was being rubbed by the eyelid to cause the irritation. Wearing the soft lens has helped, but I still have some light sensitivity and discomfort for the first hour or so after I get up each day. In the last week or so it seems to have gotten somewhat better.
Despite the discomfort, I've been back to a fairly normal work schedule, and I've survived several trips (with some late travel nights) without too much trouble.
On the vision front, I'm still not seeing anything clearly with the "new" eye. In my last entry I noted the astigmatism effect -- well, it appears that there's much more astigmatism present in this eye than I had in the other one at the same point in my recovery. I'm not fully sure I understood the numbers Dr. Bruchs read off from his machine when I had an appointment in late February, but I do know that the astigmatism was so severe that the autmatic refraction machine couldn't deal with it at all -- it had no trouble refracting the other eye. I'm seeing Dr. Bruchs again next week, so I'll know more then about my visual prognosis.
March 20, 1998 -- I saw Dr. Bruchs again on the 18th. I've been suffering from a horrible cold, which has made both my eyes very scratchy and uncomfortable for the last few days, so it wasn't a very good day to have an exam -- I could barely keep my eye open. Dr. Bruchs is going to order a soft/hard piggyback lens set for me.
My astigmatism is still around 12 diopters, which frankly has me a bit concerned. However, Dr. Bruchs said that although the stitches are now controlling the amount of astigmatism, when they are removed the controlling factor will be the astigmatism in the outer circle of my original cornea, which was about 3 diopters, and that over a few weeks after stitch removal the astigmatismt should trend toward that level. I sure hope it does!
April 8, 1998 -- The last several weeks have been pretty unpleasant. I've had terrible light sensitivity problems in the left eye, and the Dayton weather hasn't cooperated -- it's been sunny and beautiful! I feel like I've turned into a vampire...
Things may be turning around a bit, though. I've seen Dr. Bruchs a couple of times in the last week, and he doesn't see anything wrong with either the eye or my eyelids (like blephoritis (sp?)) other than a couple of dry spots on my cornea, one near the knot in my running stitch, and the other at about 9 o'clock near one of the zig-zags in the stitch. I now have a thicker soft lens to wear, which should do a better job shielding the dry spots from being rubbed-over by the eyelid, and I've been on Vexol three times a day. It seems to be helping -- the light sensitivity seems to be getting somewhat better, although it's still a bother. He said that it could take as much as two weeks for the dry spots to completely clear up, so I need to be patient -- again.
I also got a lifesaving device from the optical shop -- a pair of "UVShield" sunglasses. They're big plastic things, not exactly stylish (they look like the goggles fishermen sometimes wear to block glare) but they are nice and dark, and wrap around the side of my face. Blocking bright light from the side has been a real help. In fact, I've used black electrical tape on the inside to completely block the sides, and that's helped a lot. Best of all, they're only $10.00 -- much better than the $80 I earlier paid for a pair of goofy surfer sunglasses that didn't work half as well. As Jerry Pournelle would say, "Highly Recommended."
I'm off to Arizona today to spend a week with my Mom in Tucson. I look forward to the trip, but this will be a test of whether all the remedies described in this entry are enough to let me cope with the bright desert sunlight.
April 18, 1998 -- We had a good trip to Arizona. With the UVShield sunglasses, I didn't have too much trouble with the light, although I didn't do any driving. My right contact lens, a soft toric, did tend to dry out in the desert air, but occasional drops helped keep that under control.
While in Arizona, I had the feeling that my eye was getting more comfortable, and that the light sensitivity was diminishing. However, my first few days back in Ohio were a bit of a disappointment -- driving to work remains very difficult, even with the dark sunglasses on cloudy mornings. I'm beginning to suspect that the problem is less light sensitivity, than some other factor that makes it difficult to keep my eyes open and looking out while driving. I usually put my lenses in at about 7:10 and leave for work at about 7:25. However, by 8:30, or sometimes even 8:00, the discomfort is reduced very significantly. Another factor that may be playing into this is that I haven't slept well for three of the four nights we've been home, and have had a bit of jet lag on top of it. Maybe fatigue is part of the problem. I'll be seeing Dr. Bruchs on Wednesday (April 22) and will report back after that.
April 22, 1998 -- I have some good news to report tonight -- seems like the first in a while (though my troubles have been more gripes than anything serious).
I saw my optometrist today and tried on a hard lens over the soft contact I've been wearing as a bandage for the last several weeks. This is a lens that he designed in conjunction with the consultant at the contact lens factory, and is supposed to be a new design and/or material that's good for post-transplant, high astigmatism patients. On the first try, the lens is within 1/4 diopter of the correct power, and masks all but .5 diopter of my astigmatism! He's fairly pleased with his handiwork.
One interesting thing is that the left eye, with the hard lens piggybacked on the soft, is so much more "crisp" than the toric soft lens I'm wearing in my other eye. It's almost like a laundry detergent ad -- whites are whiter, and blacks are (much) blacker. I think I'm going to give up on the toric lens and switch back to the hard lens in the right eye. The better vision is worth the inconvenience.
Finally, the extreme light sensitivity I've had for the last six weeks or so is quite a bit better after three weeks of increased Vexol dosage, and wearing the soft bandage lens. The minor abrasions that were visible near the stitches are now largely cleared up, though there is still a trace of roughness left. Dr. Bruchs has recommended that I try wearing the soft lens overnight to see if that will help finally heal the rough spots.
Anyway, today was a repeat of the thrill I had last year the first time I had correction on the right eye after its transplant -- it's a feeling I could get used to!
April 22, 1998 -- One thing I forgot to mention yesterday. Dr. Bruchs did another set of readings and said my left eye astigmatism is now 9 diopters, down from the 12 he saw the last couple of times he measured. He's also arranging to have me get my corneas mapped as an aid to fitting both eyes. I hope to get copies of the maps in electronic form so I can include them here.
April 28, 1998 -- I've been wearing the hard lens piggybacked on my left eye for the last several days, building up the wearing time. After the first two days, I've had very little discomfort and have been able to increase the time by about two hours per day. That's the advantage of having the soft lens there to cushion the cornea, I guess. I remain as impressed with the quality of the vision as I was when I first tried the lens on. I am really anxious to get the piggyback combo for my right eye in process, so I can have really good vision in both eyes for the first time in 20+ years.
I had corneal maps made of both eyes today. I'm not sure what to make of them, but the pictures sure are pretty. If you're interested, here are scanned images of my new corneas,
July 14, 1998 -- Boy, it's been a while since my last update. There's been very little to report with my left eye -- the RGP lens piggybacked over a soft lens continues to work well, and the vision is very nearly 20/20.
The real news is that my light sensitivity is much reduced over the last month or two. I still wear the UV Shield sunglasses in the morning on sunny days, and looking into the sun first thing in the morning is a pain (unfortunately, I have to look due east to check the road when I turn out of my driveway), but the level of sensitivity is much, much lower than it was before I started wearing the piggyback lenses.
I know the diary for my first transplant (on my right eye) is officially closed, but I should report that I've gone back to wearing an RGP/soft lens piggyback combination in that eye, as well. The soft toric lens I've been wearing since last December was a nice experiment, but the quality of the vision just wasn't good enough -- and this became very obvious when I started wearing lenses on the left eye; it's amazing how you can live with lousy vision until you have something to compare it with. The piggyback combo provides much better vision, though it's not quite as good as the left eye's correction at this point. I think we still need to do one more iteration of lenses to get the correction absolutely right, but the vision is so close to correct that I'm not worrying about it.
I also think that there's been some change in my right eye since the fitting last winter -- my glasses no longer work nearly as well as they did then. Perhaps the "settling" time after removing the stitches is longer than I had suspected.
Anyway, at the moment things are going very well and I doubt there'll be much new to report until I get my stitches out in December.
October 30, 1998 -- I had an unexpected visit to Dr. Bullock yesterday. For the last month or so, I've been noticing that something was different in the way the contacts lenses were fitting on my left eye. I'd also noticed some continual tear flow. There wasn't any discomfort, though, so I didn't pay too much attention.
But earlier this week, I started to have a general discomfort around the eye and thought I'd better get in to see the doctor, especially since I'm about to leave on some international business travel and didn't want to get caught in the middle of a rejection episode somewhere over Asia.
It turns out that a couple of the sutures had broken, and the thread ends were exposed on the surface of the eye, causing irritation. Dr. Bullock decided to remove all the stitches (about one month earlier than he normally would have). That went OK, although with the usual difficulty I have in trying to point my eyes on command -- I've discovered that unless there's something I can focus on, I just can't keep my eyes aimed at a spot in space.
Dr. Bullock saw a vein growing in toward one of the broken stitches, so I'm on a stepped-up dosage of Pred Forte for the next two weeks to try to clear that up. The only downside is that he doesn't want me to wear contacts on the eye for two weeks, so that means I'll be operating with one eye on the upcoming trip. I've done it before, so I'm not too worried, but the trip will be a bit less enjoyable than I'd hoped.
I'll see Dr. Bullock again on November 13, the day after I get back. I'll probably wait until December before I have Dr. Bruchs (my optometrist) start working up a new prescription for my contacts. It took over a month for my other eye to stabilize after its stitches came out, so there's no point in rushing things.
November 15, 1998 -- I had a good time on the trip, despite being one-eyed. I got back to Dayton late on the night of November 11, and saw Dr. Bullock again on Friday the 13th (a bad sign?). The eye looks OK, and the offending vein seems to be going away, but Dr. Bullock wants me to keep the lenses out of my left eye until he sees me again next week. Since I am what's known as a "steroid responder" the two weeks of Pred Forte caused my eye pressure to increase quite a bit, to the high 30s. To correct this, I'm on Timolol twice daily for the next week. I'm to stop using the Pred Forte, but replace it with Vexol four times a day, tailing down in one week intervals to once daily. (Apparently, you can't just stop taking a heavy dose of a steroid like Pred Forte cold turkey -- you need to "tail down" the dosage gradually.)
My next appointment is November 20 with Dr. Bullock, and then I'll see Dr. Bruchs on the 25th to start getting new lenses ready for the left eye.
November 20, 1998 -- Followup visit today was OK, with permission to start wearing my left lenses again (yay!). One week of Timolol and off Pred Forte dropped my pressure to 20.
December 11, 1998 -- I should have updated this a few days ago, but it's been a very busy week. Some bad news (fortunately temporary) since the last entry. I saw Dr. Bruchs on November 25 for a refraction to order new spectacle and contact lenses. At that time, he cleared me to stop taking Timolol. Late in the following week, I noticed that the vision in my left eye was getting somewhat hazy -- sort of like the cloudiness that I used to sometimes see when I had a bit of edema (swelling of the cornea) from long contact lens wear. I'd had a bad head cold for several days, and the cloudiness wasn't pronounced enough to be an obvious problem, so I didn't think too much of it on Friday.
But by Sunday, December 6, I was getting a bit worried. Not knowing what the problem might be -- rejection? cataract? nothing at all? -- I called the medical society emergency number and talked to Dr. Fuller, who works with Dr. Bullock. He agreed that I should come in on Monday morning.
On Monday, I saw Dr. Bruchs. He didn't see anything grossly wrong, but did notice some edema. He checked my intra-ocular pressure as a precaution, and found that it was at 48, which is very high. He put me back on Timolol and at a followup visit on Thursday the pressure was back down to 29, still high but moving in the right direction. I have another followup visit scheduled for next week; hopefully the pressure will be back to normal by then. Our guess is that I stopped taking the Timolol too soon after stopping the Pred Forte. In the past, my pressure has always dropped very nicely after stopping the Pred Forte, but something must have been different this time around. Anyway, we've learned to keep a closer watch on the pressure.
As a side note, the residual astigmatism in my left eye is about 4.5 diopters; disappointing considering that the right eye healed with only 1.5 diopters, but still within correctable range. The fact that the astigmatism appears to be regular makes things a bit better (and my vision easier to correct).
I'm still waiting for my new spectacle lenses to arrive. I picked up the new left contact lens on Thursday and have been wearing for a day and a half. The visual correction is good, but the lens seems to be moving around on my eye, and there's some intermittent "flaring" from bright objects. I think we need one more set of adjustments to get all that taken care of.
April 27, 1999 -- Gee, over four months since my last update. Things have been relatively stable, though I have had one interesting experience. In January and February I began to notice some discomfort in the fit of the soft lens in my left eye. I can't really explain the feeling, it just didn't seem right, and I found that the lenses were frequently getting out of place. It turns out that the curvature of the soft lens was too flat, and it was "wrinkling" near the inside edge (closest to my nose). A change in the base curve from 8.4 to 8.7 pretty much cleared that up. The interesting question is why a lens that fit perfectly for years before suddenly had this problem. We have no idea why...
I'm continuing to use Timolol once per day in my left eye to manage the intra-ocular pressure, and use Vexol every other day in both eyes as a long-term anti-rejection measure. Vision in both eyes is nearly 20/20 with correction, though it's clear that I'm getting old; my reading vision is deteriorating and reading glasses are in my future. I also have a pair of glasses that work pretty well. My vision is still much better with contacts, but I can read, watch TV, work on the computer, etc., with the glasses, and I don't feel too uncomfortable driving with them if I have to.