by John AckermannFinal Update: 12/2/97
Note: this diary describes my experiences with a cornea transplant in my right eye. After that operation was deemed a success, I had a transplant in my left eye on December 3, 1997. I've kept a diary of my experience since that time at Transplant II: The Sequel, and you might want to check that page for the other half of the story.
For more information and links, you might want to visit my main Keratoconus and Cornea Transplants page.
Introduction
Keratoconus is usually diagnosed in the teens or early 20's, and I was average in that respect. Before all this began, I was an avid photographer. When I was 19 I noticed that I was seeing double through the camera viewfinder, and that reflective signs at night seemed to be doubled. My regular eye doctor suggested it was just "something I'd have to learn to live with" but fortunately I went to an opthalmologist and got a slightly more detailed diagnosis.I've worn contact lenses since then. At first, my vision wasn't badly affected, and I could get a correction with hard contact lenses to 20/30 or so in each eye. Wearing time with the lenses was always an issue, though, and I could never do more than about 14 hours. Since I can't see well enough to do anything when I don't have my lenses in, that put a crimp in my lifestyle.
My comfort level improved greatly several years ago, when my current optometrist, Dr. Greg Bruchs, fit me with "piggyback" contact lenses -- a soft lens worn in each eye, with a hard lens worn on top of it. The soft lens protects the cornea from the hard lens and really increases comfort and wearing time. While some keratoconus patients can wear their lenses only a few hours a day, I can keep my piggyback lenses in for as long as 20 hours if necessary (once I actually did a stretch of over 40 hours straight, with the hard lenses out for an hour or so in the middle).
Unfortunately, however, my vision has continued to deteriorate to the point where the corrected vision in my left eye was 20/50, and my right eye could only be corrected to 20/80. In August, 1996, Dr. Bruchs and the opthalmologist he works with, Dr. John Bullock, recommended a cornea transplant for my right eye. Dr. Bullock did that surgery on October 2, 1996.
This web page is a diary of my experiences, as they happen. I'm making this information available because I was unable to find anything like it as I was searching the web for information about cornea transplants -- there wasn't much information about the post-operative period, the (lengthy) healing process, or the final goal of getting corrected vision. Of course, everyone's situation is different, and so will be their experience with surgery, but I hope this information will provide some idea of what a person undergoing transplant surgery can expect.
What I knew going in was that the procedure has a very high success rate, that with any luck I'd end up with near-normal corrected vision, and that it would take a long time to get there -- the cornea heals very slowly, and the stitches would stay in my eye for a full year. If things went well, it might be possible to fit a soft contact lens while the stiches are still in, but there are no guarantees of that. Everything else is an unknown right now; you'll learn about it as I do.
Please forgive any typos in this diary, as much of it was typed with one moderately-functional eye, using a computer screen that's entirely too small.
My Transplant Diary
October 2, 1996 (written 10/3/96) -- the day of the surgery. One thing that may surprise you: as gory as "cornea transplant" sounds, it's done on an outpatient basis. I showed up at the hospital at about 10:45, sat in the pre-op ward until about 12:45, had the surgery, and left the post-op ward for home by about 4:30.The operation can be done under either a local or a general anesthetic; I chose general anesthesia, and everyone from the doctor on down seemed to think that was the right choice. I'd never had anesthesia before, and I have to say that the stuff really works -- one minute I was talking to the anesthesiologist, and the next thing I knew, I was in the recovery room.
Waking up wasn't particularly pleasant, but I didn't have any problems. My right eye had a bandage and a metal shield. It didn't hurt at all. After a while of slowly regaining consciousness and coherence I got dressed and my wife, Jody, drove me home.
The anesthesia really did a number on me, and I didn't do much but sleep from the time I got home until right before I had to go to the doctor's office the next morning for the post-op visit.
One interesting note -- I was the youngest patient in the surgery that day by about 30 years (I'm 39 years old). Most of the other folks were having cataract implant surgery and were in their 70s or even 80s -- the fellow in the cubicle next to me was 84.
October 3 -- my post-op visit was at 9:15 a.m. Dr. Bullock removed the bandage, took a look, and pronounced everything fine. I didn't know what to expect when I first looked through my new, improved, right eye -- it was very blurry, and somewhat hazy. But the vision was totally different than before. The incredible distortion and double vision I used to have when I didn't have my contacts in was gone, and that's an improvement. The vision will change over the next weeks and months as healing goes on, but it certainly seems to be on the right track.
I'm to use two different eye drops -- one to fight off infections, and one to reduce irritation -- but don't need to keep any bandage on the eye. I do need to wear the metal shield or some other protection whenever I sleep, or do anything that could result in something poking the eye.
I was still pretty groggy today, and didn't do much but doze around the house. There was some discomfort when I blinked, but nothing too painful.
October 4 -- my tear ducts started working overnight, and I woke up several times with tears running down my cheek. I had some discomfort when blinking, though it wasn't excruciating. A call to the doctor seemed prudent, and the office told me to come in for a followup visit. Everything was fine. I guess it's important to remember that this is a fairly major event in the life of my eye, and it's bound to be a bit irritated about it for a while. The doctor said that the first week typically was the most painful, and after that the comfort improved considerably. I have a one-week followup next Thursday, so we'll see how things are then.
I put the contacts in my left eye today, and was able to do a bit of reading. I watched some TV, and have been spent the last half hour or so writing this web page. It's probably time for a rest now, so more later.
October 5 -- my daughter Allison's 10th birthday, and I went along to the roller-skating rink for her party -- making sure to wear my shield so some little elbow didn't poke me in the eye. No, I didn't go out on skates -- sitting and watching was plenty!
I think I'm seeing a pattern of having lots of watering in the eye overnight, and some discomfort in the morning. By noon or so the watering stops and the discomfort pretty much disappears.
Vision in the right eye is improving, and is noticeably better than in my uncorrected left eye. It's still too fuzzy to do much with, but it's improving day by day. I suspect it'll never reach anything close to 20/20 without correction, since I was very nearsighted before the keratoconus began. The transplant doesn't replace the lens in the eye, so I think the underlying myopia will still be there and need either glasses or a contact lens to correct.
October 6 -- Definitely a pattern of night-time discomfort, followed by gradual improvement during the day. Last night I don't think I slept for more than an hour at a stretch -- I was awakened constantly either by watering or burning (or both).
It took until about noon today before things calmed down enough to allow me to read a little, and catch up on email. I was able to take a couple of walks around the neighborhood for the first time since the surgery, and that was nice.
Today's experiment: I'm putting in artificial teardrops just about every hour, in the hope that keeping the eye nice and moist during the day will help alleviate the problems at night. In a few hours, I'll see how that theory works...
October 7 -- Went back to work today for the first time. I did about a half day, arriving at 10:00 and leaving at 2:30. Jody drove me there and picked me up, as I'm still a bit leery about driving. I wore an eye patch, which made it a bit easier to focus on the computer screen with my good eye, but the doctors would rather I keep the eye uncovered, so I'll try not to use the patch too often.
I don't know if it's lingering anesthesia, but by the time I got home I was wiped out and took a significant nap.
Last night was better than Saturday night, but my eye still watered and burned quite a bit. I called the doctor's office and got permission to try using "Refresh PM" which is a gooey eye lubricant (made of mineral oil and petroleum jelly) which has helped my dry eyes in the past. I'll put that in right before bedtime and see if it helps.
October 9 -- It's one week after the surgery, and things are getting better. The Refresh PM did help my eye overnight, and I've had decent sleep the last two nights. The redness in and around the eye is starting to decrease, and during much of the day today there was no noticeable discomfort at all. The vision in the right eye has remained fairly stable -- it's definitely better than the uncorrected vision is in the left eye, but not nearly clear enough to be of any use.
October 10 -- Saw the eye doctor for my one week followup this morning. All is going well. My next appointment is in one month. The doctor thinks he'll be able to try fitting a soft contact lens to get at least some vision correction in another month or two. In the meantime, I'm to continue taking the antibiotic drop twice daily, and reduce the steroid drop (Pred Forte) to three times per day.
October 17 -- Well, I suppose as time goes on there's less to report, so a weekly update isn't being too tardy. Things have been going well. My eye still has some burning and watering, particularly at night, but nothing intolerable. I have some light sensitivity in the mornings, but by late morning that seems to clear up. My vision in the eye has cleared slightly, but it's still a long way from being usable.
I went back to work half-days last week, with Jody driving me in at about 10:00 and picking me up at 2:30. This week, I tried for something closer to full time, but found two days of 8:00 to 5:00 were a bit much. The biggest problem is that I cleverly chose a career where I spend much of my time looking at computer screens, fax printouts, and other hard-to-read things. It's taking my "good" eye some time to get used to doing all the work.
The doctor said he didn't want me to wear an eye patch full time, because they don't want the eye muscles to atrophy, but I got permission to wear the patch during the morning, when the eye is most light sensitive, and as needed later in the day. I find it's a lot easier to work on the computer with the patch on.
I started driving again this week, and have found the patch pretty much a necessity to be able to see and concentrate well enopugh to feel marginally safe.
October 30 -- It's now four weeks since my surgery. The pain in my eye has pretty much disappeared, though the lids are still swollen and I get some occasional scratchiness. This morning I was able to get to work at about my normal time (a bit before 8:00 AM) for the first time.
The biggest problem I've had in the last week or so has been with my left eye. The strain of doing all the work has made it get quite scratchy and uncomfortable. After experimenting with various drops and switching to a new soft contact, the irritation seems much better in the last few days. But fatigue in the left eye is still more of a limitation to my work day than any discomfort in the right eye.
A side note: several of the folks I've corresponded with have mentioned great changes in the vision of their transplanted eye during the weeks after surgery. I haven't seen any of that. My vision in the right eye is very fuzzy and nearsighted, and while I think it has gotten somewhat better over the last few weeks, there have been no dramatic changes, and it's never gotten close to being usable. Perhaps my underlying nearsightedness is so great that it masks any changes that result from the cornea's healing.
My next appointment with Dr. Bullock is next Tuesday (election day!). I'm very anxious to hear when he's going to try fitting a soft lens to the eye -- I really want to get back to having two usable eyes, even if the correction isn't great, or is subject to change.
November 5 -- Apart from being election day, today was my one-month (actually, five week) followup visit. Everything seems to be OK, and my eye drops were reduced to once daily for the antibiotic and twice daily for the Pred Forte steroid.
My next appointment is in six weeks, so I guess I won't be getting a contact lens in the eye in the six to eight weeks post-surgery that has been mentioned.
November 6 -- I think that more of the irritation in my eye has been due to the antibiotic drop (Ciloxan) than I had thought. With the change in dosage, I didn't put Ciloxan in last night before bed, and I woke up this morning with much less burning than I've had. My overall comfort today was quite good, and I didn't have to wear my eye patch this morning to avoid light sensitivity. The Ciloxan instruction sheet says that the drop may cause burning, and it certainly does for me. Today's improvement may be a fluke, so I'll make another entry in a few days to see whether this is a (minor) turning point.
November 14 -- Dropping the Ciloxan down to one drop per day has very definitely reduced the amount of burning and light sensitivity I'm having. By doing both drops at night, and just the Pred Forte in the morning, my drive in to work has become much easier, and I've found I don't need to wear the eye patch during the morning anymore.
On the other hand, I still need to be careful not to overdo the reading and (especially) computer work. I spent the last couple of days doing a lot of word processing at work, and both eyes are definitely feeling the strain.
The other good news is that I'm now six weeks post-op, and that means several of the restrictions I've been under are gone -- no more bending or lifting limits, and I don't need to tape the metal shield over my eye before bedtime any more.
The six week period seems to make sense, as in the last several days I've noticed that nearly all the physical sensitivity around my eye has disappeared. For example, a couple of weeks ago rubbing my forehead above the eye hurt. That's no longer the case.
December 17 -- Doctor's appointment today, just about 11 weeks after surgery. Good news -- I can stop taking Ciloxan, which I'm quite sure has been causing most of the burning and light sensitivity I've had. I'm still on Pred Forte twice daily, but that doesn't seem to cause any trouble.
Even better news -- I can get some correction on my eye. The machine says I'm -12.00 spherical, +5.00 cylinder with a 43 degree axis. Dr. Bruchs (my optometrist) put a couple of lenses in front of my eye and I was able to read the 20/30 line!!! Dr. Bullock (my opthalmologist) has cleared me to start wearing a soft lens. Unfortunately I won't be able to get in with Dr. Bruchs for a fitting until January 10, and I wonder if he'll be able to fully correct the astigmatism with a soft lens. In the meantime, I'm going to consider getting a pair of glasses with a flat left lens, but correction in the right, to get me started.
Note -- there were several typos in the previous paragraph that I corrected today (1/11/97).
January 11, 1997 -- I saw Dr. Bruchs today and have quite a bit of interesting news.
First, I've been having some scratchiness in my right eye. It didn't seem severe enough to indicate a broken stitch, but I couldn't figure out what else it might be. Dr. Bruchs said that the knot in the running stitch had popped up so it protruded from the surface of my cornea. It doesn's stick out far, but it's right at the 12:00 position and perfectly placed to irritate my eyelid. It's not too annoying, and the news below will make it less of an issue.
We talked about the alternatives for getting some correction on my right eye, and decided that since I'm wearing the piggy-back hard/soft lens combo on my left eye, it's probably best to do the same on my right one, at least for now. He did a refraction and was able to come up with 20/20 at distance, and by adding an additional diopter (I'm getting old, *sigh*), 20/20 for reading.
Interestingly, the soft lens will be the same as I wore before the surgery (-6.50, 8.8 base curve, 14.0 diameter Surevue). I thought the lens would change, but apparently the change in shape caused by the new cornea is insignificant in the context of a soft lens fitting.
The new hard lens will be an RGP with a bifocal-like feature -- the power is slightly greater at the edges of the lens than at the center, and this can apparently provide for distance as well as near vision in a single lens. The hard lens should be in on Wednesday or thereabouts, so a bit more waiting is in store.
Since I had clearance to wear the soft lens, I put it in this morning, mainly to see what would happen, but also in the hope that it would protect my eyelid from the protruding stitch. I was quite surprised to find that the soft lens alone gives me vision out to at least five feet or so that's *better* than the corrected vision in my left eye. In particular, at reading and computer screen distances, I see *much* better than with my left eye! As I'm typing this now, I can see the computer screen much more clearly than I can ever remember seeing it before. Maybe I'll have fewer typos from now on...
January 17, 1997 -- I got my piggyback lenses yesterday, and it's amazing how well I can see with my right eye now. I'm seeing 20/20 (maybe even a bit better) at distance, and about 20/30 for reading (I'm getting old, and bifocals are in my future. Sigh.).
Dr. Bruchs wants me to build up wearing time over the next week, so I was only able to wear the lenses for a couple of hours yesterday, and about 4 1/2 hours today. I should be up to full-time wearing by the Wednesday or so.
The most interesting thing is that I'm surprised not so much by what I can see now (although it's a delight to discover details that I've never seen before in common things), but rather by how absolutely horrible the vision is in my other eye. It's been so many years since I've seen anything tack-sharp that I guess I didn't have a frame of reference to tell me that I really couldn't see worth a damn. Although I was right-eyed before my KC set in, since then my left eye has always been my "good" eye, and I've been relying on it to do most of the work -- and it's all I've had between the transplant and now.
After seeing with my new, improved right eye, I can't imagine how I ever got along by relying on the left one (which corrects to about 20/50). The brain must be an awfully powerful signal processing system to take the crud my left eye was feeding it, and convert it into something I could use.
I think the biggest adjustment now will be to teach myself to use my right eye instead of the left one, but that's an adjustment I'm happy to make...
January 28, 1997 -- I've been able to wear the contacts in my right eye pretty much full time for the last several days. It's great to be able to see!
I do have some occasional problems with a cloudiness that I think is related to the soft lens drying out. I noticed this before the operation, but it wasn't as much a bother then as it is now. Interestingly, this doesn't happen at all with the left eye.
I'm still getting used to using my right eye as the dominant one after so many years. It only took a day or two for the right eye to predominate at distance, but reading is more of a challenge -- I'm just farsighted enough that the reading distances of my left and right eyes don't overlap at all, and I have to force myself to hold papers and books far enough away to let the right eye take over.
Changing subjects a bit, my light sensitivity is now essentially gone. I think a combination of being off Ciloxan, and wearing the soft lens to shield my eyelid from the stitches, did the trick.
March 30, 1997 -- I haven't updated things for a while, so here goes. Getting to the important stuff first, my right eye corrected vision is about 20/20, so there's nothing to complain about here!
The cloudiness I referred to in the previous entry was actually some edema (swelling of the cornea) that resulted from not getting quite enough oxygen through the hard and soft lenses. A change to a more gas-permeable hard lens solved the problem.
As of the end of February, I own a pair of glasses -- my first in about twenty years! The correction in the right eye is quite good, but the lens is very thick and there's a lot of "barrel" distortion. The left eye, naturally, doesn't correct well at all; it's better than nothing, but not nearly as good as the 20/50 the left eye will do with contacts. Overall, the glasses make a good backup, but it's obvious they won't be my correction of choice -- the distortion is pretty severe. I'm doing some international travel for work, and the glasses are a lifesaver on long overnight flights, so despite the limitations I'm glad to have them.
At my checkup in February, my intra-ocular pressure was quite high, so I was taken off the Pred Forte steroid drops and put on another drop, Vexol, instead. Apparently the steroid drops can cause increased pressure in some people. After a month on Vexol, the pressure was back within the normal range.
Not much else to report. My next appointment is scheduled for June. Assuming all goes well, the next visit after that will be in September or October, and will be for stitch removal.
August 5, 1997 -- Gee, my first update in four months! That shows how well things are going at this point, I guess.
I had an appointment with Dr. Bullock in late June and all was well. My corrected vision (with piggyback contact lenses) is still about 20/20, though I've noticed that the correction for my glasses doesn't seem to be as good as it was when they were first prescribed back in January. Perhaps the astigmatism has shifted and the contacts are hiding it. I had my dosage of Vexol reduced to once every other day.
My next appointment is October 2 -- coincidentally, one year to the day after my surgery. I expect that the stitches will be removed then, and we'll talk about scheduling for my other eye; I'll probably have it done right after the first of the year.
By the way - a brief update on wearing glasses for the first time. I've found them to be useful, but not as much so as I'd hoped. The vision out of the left eye through the glasses is pretty bad (no surprise there). The correction with the right eye isn't too bad, but the lenses are so thick that there's a very significant barrel effect if I look off to the side. I tend to wear the glasses for a bit at night, or first thing in the morning, but not much otherwise. I can read with them, but wouldn't want to have to drive or do anything else dangerous while relying on them.
They have been invaluable, though, on a couple of very long plane flights I've taken this spring. I had a trip to Asia and found being able to swap my contacts for glasses on the 11 hour flight from the west coast to Tokyo made the flight a lot easier.
October 6, 1997 -- I had to reschedule my October 2nd appointment to September 29, so I had my stitches removed one week ago today. Although it wasn't painful, it was a very unpleasant experience. I had great difficulty aiming my eye "up and to the right" as Dr. Bullock kept asking, and although he remained calm, I think we were both a bit stressed by the time he was finished. I know I was...
I was told to keep the lenses out of my right eye for a couple of days, and to use Tobradex ointment nightly until my next appointment on October 14. The eye was quite scratchy and uncomfortable the rest of the day, but by the next morning, it wasn't too bad.
It appears that removing the stitches has changed the shape of my cornea, because my lenses feel just a bit different (although not uncomfortable) and my vision has been varying quite a bit, particularly in low light. Dr. Bruchs said that most of the change in shape takes place during the first 24 hours after the stitches are removed, but that there is some change for as much as two weeks. So, he'll do a new refraction on October 14, and hopefully I'll get my final prescription for a soft toric lens for my new right eye.
The other bit of news is that I'm scheduled to have my left eye transplanted on December 3, so it looks like I'll be starting another diary...
October 14, 1997 -- I've recovered well from my stitch removal, and had a near-final refraction today. It looks like I'll meet the goal I had before the transplant, which was to be able to wear a soft lens for full correction. My eye healed well enough, with mild enough astigmatism, that I can wear a soft toric contact lens. The lens is on order and should be here in a week or so.
I asked Dr. Bruchs to pull all my post-transplant refractions from the file. Here they are; they show an interesting progression (in the right direction!):
12/17/96 -12.00 +5.00 x 43 02/17/97 -11.00 +3.50 x 177 10/14/97 -10.25 +1.25 x 19 In each case, the refracted correction shows as 20/30, but the actual correction with the piggyback lenses I've worn since last February was 20/20, and Dr. Bruchs thinks I'll get very close to 20/20 with the new lens, as well.
An update on medications: I'm off the Tobradex ointment that I used after the stitch removal, but I am still to use Vexol drops once every other day, and will probably be on that indefinitely as a precaution against rejection.
I've also confirmed my left eye transplant for December 3.
November 13, 1997 -- I now have what will probably be the final version of the soft toric lens for my right eye. The vision corrects to "20/20 minus" and isn't bad at all in daylight conditions. The same isn't true at night, however. There's a very strong flaring effect -- I see three spikes, spaced at 120 degrees, from any bright object. I could probably get used to it, but it's sure troublesome for me now.
I've ordered a new lens for my glasses to match my new prescription, and am planning to give the glasses a serious try instead of the soft lens. This particularly seems appealing with my upcoming transplant in the other eye. Glasses, assuming I get good vision with them, may be a good interim solution until the other eye is stablized and we can figure out a system that makes sense for both eyes.
December 2, 1997 -- I've been wearing the new soft lens with pretty good success, though the flaring at night is still bothersome. I also have a lens in my glasses that works quite well, so for the first time in 20 years I'm not reliant on contact lenses to see.
Tomorrow I'm having a transplant in my left eye, so I think it's time to close this diary and start a new one...
Go to "Transplant II: The Sequel"
Return to "Keratoconus and Cornea Transplants"