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About one and a half month ago I underwent a corneal transplantation to treat the advanced Keratoconus in my right eye. To make my experiences available to readers outside the Netherlands I decided to write an article in English with all my experiences with the corneal transplantation.

My history with KC

I was diagnosed with Keratoconus when I was about 20 years old. Before that, I went through the usual phases. First near-sightedness, then astigmatism corrected by switching from soft to hard lenses and finally a visit to the eye hospital of Rotterdam where I was diagnosed with KC and scleral lenses were fitted.

After that I had years of “just” wearing scleral lenses. Now and then some irritation but overall these lenses didn’t cause much trouble and my life was only slightly impacted by KC.

Lens troubles and ophthalmologist visit

Fast forward to 2008. Because my lenses were getting old and scratched they tended to pick up dirt easily and cause irritation. First I went to the lens specialists in my own town of Utrecht. After trying to unsuccessfully fit a lens they referred me to an orthoptist in their company. He also tried to fit a new lens but didn’t succeed. He explained that it was very hard to fit a lens because the KC in the eye had progressed to the point that it is hard to make a lens that corrects the vision and fits the eye properly.

Shown below are the topographs of both eyes. Red means “large difference from normal eye curvature” if that wasn’t obvious 🙂

And another picture showing my right eye from the side. Even an average person without any knowledge of this eye condition would easily see there is something wrong.

Some time after visiting my orthoptist I had an appointment with an ophthalmologist at the Utrecht University Hospital because I wanted to know what to do next since I had basically lost the use of my right eye. The doctor told me that both eyes had very advanced KC and that eventually both eyes needed to get a corneal transplant. I told that my right eye didn’t tolerate a lens any more so that eye needed get surgery first.

I was put on a waiting list for the corneal transplant. This took some time. In the mean time my orthoptist was able to fit a new lens for my left eye. He was able to get as much vision out of the eye as possible and make the lens fit perfectly.

Surgery

After months of waiting I finally got a date for the surgery. I had to stay in the hospital for about 3 days. On the 1st of July I was admitted to the hospital. Basically you were shown your room, various things such as facilities were explained and I got an identifying bracelet.

There were also various examinations on my right eye. Drops were administered to dilate the pupil to get a better look at the cornea. My eye was also shown to a medical student who looked at my eye with a slit lamp. She probably saw an eye with KC for the first time. A doctor who did the actual examination explained to her the typical signs of KC, thinning of the cornea and scarring at the top of the conus due to malformation of the cornea.

I was also examined by another ophthalmologist who was going to perform the surgery. He decided that it was best to perform an PKP surgery which stands for Penetrating KeratoPlasty. The surgery would be performed using the “mushroom” method which refers to the shape of the donor cornea. Because of the mushroom shape there is more contact between the donor cornea and the remaining cornea tissue. This causes the wound to heal more quickly and ensures that the new cornea is more strongly attached to the surrounding tissue.

I spend that evening reading some magazines and a book and talking to other patients in my room. I had some trouble falling asleep but a  sleeping pill took care of that.

The surgery took place the next day in the morning at about 10:00 AM. I drank a cup of coffee (black, no sugar and/or milk) at 7 AM because I was not allowed to eat for 6 hours before the surgery.

Again eye drops (picture above) were administered, this time to constrict the pupil, probably to make the surgery easier. I removed my left lens because they are not made to sleep with, and I would be “sleeping” for a while. So, half and hour before the operation and several hours afterwards I had to rely on my residual vision of my left eye, which does not amount to much.

At about 9:45 I had to lay down in my hospital bed and I was brought to the operating room. This was a little bit stressful because I had never experienced general anaesthesia before. After various sensors (heart rate, blood oxygen) were attached I heard a machine beeping to the rhythm of my not-so-slightly elevated heart rate. The anaesthetic was administered and in a few seconds I was gone.

After surgery I woke up in the recovery room with a big bandage on my right eye and an IV drip connected to my right hand. People were running around tending to the recovering patients. Soon they discovered I was awake and I was taken back to my room.

After that I spend the rest of the afternoon resting. At the end of the afternoon I got out of bed, took a shower and put on some clothes. I was visited by my parents, my sisters and a friend. They stayed until 8:00 PM when visiting hours were over. I was glad that they visited me but I was also glad when they had left because I was still tired. Not surprisingly I slept really well that night.

Below is a picture from they day of the operation, made by one of my sisters. I still have the bandage on but I don’t look that messed up:

I guess some people will be wondering if there was any pain. On the same day the operation I did not experience any significant discomfort besides being quite tired, probably from the anaesthesia. I felt that something had been done to my eye but there was no such thing as pain. I also had this big bandage over my eye that gave some protection. I noticed that it was possible to see the light coming through the bandage and I was able to move my eye, again without pain.

Leaving the hospital

Next day I woke up at about 8:00 AM and had some breakfast. After that the nurse removed the bandage and I took a shower. Needless to say, my eye was quite sensitive and red as hell. After showering I put in my lens for the left eye and walked a little bit around in the room. I looked out of the window and noticed that my right eye really did not like the light. Because of KC I am already quite sensitive to light but this was definitely worse.

Because I was still quite tired I went lying in bed again to doze off for an hour or so. I was awoken by a nurse who told me that a doctor needed to examine the eye to see if the operation had succeeded.

The doctor (thankfully!) put some numbing drops in the eye and proceeded with the examination. Everything was OK so I could leave the hospital to go home. Since I had arranged to stay some time with my parents after the operation they were called to say I was ready to be picked up.

Some time later I had packed all my stuff and I walked to the main entrance of the hospital where my parents were waiting in the car. It was blazingly hot outside for the Netherlands, about 30 deg. Celsius and quite humid. We drove to the center of the city where I live to have my parents pick up some more things from my room. I also went to the pharmacy to pick up the eye drops that I had to use.  After that I joined my parents again to drive to Reeuwijk, where they live.

Staying at my parents

The first days after the surgery I was quite tired and I often slept for some hours during the day. My eye was still very sensitive to light so even with sunglasses on going outside in full daylight and sun was not comfortable. I also had the tendency to keep the eye fully or half closed. Generally the discomfort in the eye varied, usually the worst when waking up and slowly decreasing during the day.

I also had to use eye drops containing antibiotics and corticosteroids 6 times a day. During the night I had to use an ointment containing corticosteroids and wear a plastic shield over the eye to protect it. Using the eye drops was quite easy, it was just a matter making sure I got 6 drops in the eye during the day. I found the eye ointment to be slightly annoying, because it contained petroleum jelly it tended to make the eye and it surroundings greasy. To remove the greasiness I had to take a shower and gently wash the area with some soap. My eye was also giving of tears a lot in the first days of the operation. It didn’t really bother me because it seemed a natural reaction of the body to an “irritated” eye. To keep the eye clean and remove any excess fluids I just used a lot of soft tissues.

Below is a picture of the eye about 2 days after surgery. Still quite red and irritated:

After some days after the operation I slowly picked up my usual activities. I went to the city of Gouda with a friend on a bike, operated my computer and did some reading. Before the operation I had put up an antenna for ham radio use. I had brought my transceiver with me so it was easy to connect everything up and operate on various frequencies. I made some contacts on short-wave bands, with one station being 2200 km away from my location. Because there already was a VHF/UHF aerial on the roof it was also possible to communicate with local stations. I was even able to talk to people in my home town of Utrecht, some 30 km away.

Below is a picture of my set-up at my parents house:

First check-up, going home

On the 10th of July I had my first check-up. Everything seemed OK, but the doctor noticed a small blister on the back of the transplanted cornea. Another doctor also looked at it but it was decided that it was not a big issue and they would keep and eye on it in case it caused any trouble. I had to use the ointment at night until it was all used up, but I had to continue the eye drops during the day.

After about a week I went to my room in Utrecht for one night to return later because my grandparents were visiting my parents. Later, about 1 and a half week I returned home. My parents and me were surprised about how soon I felt ready to return home.

Second check-up and progress until now

On the 24th of July I had a second check-up. First my eyesight was measured but there was no improvement from the last check. After this examination I went to a different doctor who examined my eye with a slit lamp. The small blister was still there so the doctor who did the surgery was called in to have a look. He decided that it still didn’t seem to be a big issue.

However, there seemed to be a different problem with the eye that needed more immediate attention. Because of the use of corticosteroids my eye pressure had risen causing the donor cornea to be over-saturated with water. Normally the cells at the back of the cornea pump back excess water but too much water was entering the cornea causing it to be slightly opaque.

In normal lighting it is hard to see that the cornea isn’t completely clear. However, I made the following picture with a flashlight that shows the problem. It is not very visible but clearly present if one knows what to look for:

The doctor decided that all corticosteroids including the ointment needed to be stopped. I had to use Cosopt, an eye pressure reducing drops 2 times a day.

I was a little bit disappointed with these slight complications but overall I did not have any pain or irritation so I thought it would be best to be patient and wait for the cornea to clear up.

Currently I am unemployed so I also have to find a new job while I have only one eye with less than satisfactory vision to see with. I’m not completely happy with this situation but I will just try to find work and see how well it goes. I am still able to use a computer but sometimes it is tiring to look at the screen at high resolutions.

I hope you enjoyed reading about my experiences. Next check-up with the doctor will be at the end of this week, of course there will be an update about it.

Feel free to comment on this article, I will happily answer any questions about KC and corneal transplantations. I think it is a good thing to talk with people about upcoming or past medical treatments.

By the way, there are some more pictures of my eyes in my on-line photo album for you to look at.