My brief history
After having KC for 10 years and exploring various possibilities, I went on the waiting list for a graft in January 2003. Following an episode of hydrops and corneal scarring, I felt it was a necessary choice for my left eye, luckily vision in my right eye is still very reasonable.
What to expect?
This is a great question for KC sufferers in general as each case is different! However fear of the unknown can be the worst so hope sharing my experience may help others.
I was told that the waiting time was about 6 months and was given the number of the waiting list office for updates and queries. Meanwhile I attended any appointments as usual.
I received a letter in July inviting me to the pre-assessment clinic. I was given information about the ward and also told that my operation date would be 2 to 6 weeks after the pre-assessment appointment. On this occasion I was able to ask questions, received routine health checks and saw the ward I would be on. I was given a date for August 5 th.
This took place in the morning taking several hours. Before it began I met the surgical team who explained the procedure and answered any questions. Depending on your eye, hospital and surgeon there are 2 different types of graft.
- DLK (Deep Lamellar Keratoplasty), is a partial thickness graft leaving the bottom half of your own cornea and attaching the new one to it.
- PK (Penetrating Keratoplasty), is a full thickness graft, where the entire thickness of the central part of your cornea is removed.
Now for some of those questions we all want to know but might not want to ask!
How much pain is there?
I must say at this point that I am not at all brave with hospitals,
Initially, the pain was more of a throb. I was given painkillers at nighttime and more if required on request. Since the operation the eye has been more irritable than painful.
How long will I stay in hospital for?
Obviously this varies, but I stayed in for 2 nights.
What should I take to hospital?
I had my operation on possibly the hottest day of the year; the only air conditioning experienced was under general anaesthetic! Whatever the weather, the best gifts I had were chilled soft drinks as my throat was quite sore after the operation.
I also took a Walkman and calming music; Aled Jones was my saviour at nighttime! When you cannot see much it is great therapy. My brother bought me Dave the hippo who was also fantastic! I may be 28 and an independent woman, but when you are feeling vulnerable and have uncertain vision no one is too old for a soft toy!
Friends and Family
Make sure you have someone in line to help you out when you get home. I am now greatly improved at eye drops and cleaning, but needed help and encouragement in the initial stages.
It is a slow healing progress so to make people aware I have printed information from the website to give to others, including potential employers.
Healing and Stitches
I am now 3 months post graft. Even days after the operation, I was aware that my vision was better than pre-op and I do not have the distortion that still remains in my right eye.
However, the changes are slow and gradual. Some days my sight is better but the next day may be not so good. I have a new temporary prescription in my glasses; this will obviously change again when they start to remove the stitches.
The stitches, (apparently I have more than 15!) will be with me for up to a year. As I had a partial thickness graft they hope to start removing them after 6 to 9 months depending on the healing. I have to admit that I am not looking forward to this, but am heartened after reading other peoples experiences on the KC website.
So the story so far…
Although very scared, I went ahead and had the graft. I am both emotional and not a fan of hospitals!
I have already seen improvements in my vision and have survived to tell the tale. I hope that this will continue and I look forward to a clearer world.
People to thank
Miss Voon, Prof. Bron, Mr Glover and team, I was very lucky to get all of you!
All the staff on Doyne Ward at the Radcliffe Infirmary, who were lovely and very patient.
My family and friends for their ongoing patience, support and lifts – very much appreciated.
Bristol Eye Bank and my donor family, for giving me the chance of good vision.
April 2004, 8 months post graft
This saw my first visit to eye casualty. I experienced some irritation and watering in the eye. On the first occasion it was caused by a build up of mucus on the stitches, several later visits followed where 1 or 2 loose stitches were removed. This was all done in eye casualty on the slit lamp. I was given a number to phone at the hospital with any problems and was always given an appointment at eye casualty later that day. I found that you get used to how your eye will feel and react after the graft and so if you notice any changes it is best to get it checked, as generally there is something that needs sorting!
One year on…
Throughout the year I attended check-ups in the outpatients department Following Professor Bron’s retirement, Mr Leyland became my new consultant. In August 2004, it was decided that the rest of my stitches were ready to be removed and I was booked in to theatre to have the remaining 12 stitches removed under local anaesthetic. Again I was very nervous especially as this time I would be awake!! The procedure only took about 15 minutes and is a little odd rather than painful and mostly involves just keeping very still. That evening my eye was quite sore, but by the morning was much improved and just rather sticky!
Obviously this is just what happened to me and each case is different, but I hope that sharing my experience may answer a few questions for other people. Surgery can be avoided in many cases but if you do reach the same point as me, I hope this gives you some idea of what to expect. Finally, I would say try and keep in mind the long term benefits. There were times when I felt frustrated as the healing process is slow but it has all been worth it.