UK Keratoconus Self-Help and Support Association

Hi, I'm new to this forum but have found it so helpful in the past few weeks.

I've had KC for a few years now but a couple of months ago I was told I would need scleral lenses. Unfortunately before I received them I suffered a torn cornea in my left eye. It was very scary and extremely painful. I did, however, have the scleral lens for my right eye, which was brilliant. Even with just the one lens my sight was better than it had been for years. However, only a couple of weeks after having this lens, the cornea tore in this eye. This really was my lowest moment - I had virtually no sight. My hospital (Cheltenham) was brilliant and I was able to see a cornea specialist the next day. He said the tear in my right eye wasn't as bad as the left and hopefully (with the help of steroids) it would improve to the extent that I would be able to wear the scleral lens again. I am now on the waiting list for a cornea transplant for the left eye. I've been told that this will be at least two to three months.

I am due to go back to see the specialist in a couple of weeks time, when I will have more questions to ask him, but I know many of you have had experience of these transplants and hope you can help with some of my concerns. What will my sight be like after the transplant? Will I still, eventually, have to wear a scleral lens on the transplant eye? How long before I can return to work? My employers have been OK so far but I am worried that I will lose my job if I have to keep taking time off.

Thanks for any help or advice you can give.

Stef23 wrote:What will my sight be like after the transplant?

Impossible to say, the idea of any corneal surgery is to try and get a corneal surface where vision is easier to correct. As far as I know the split is pretty much 50:50 between those needing contact lenses and those needing glasses to get good vision. This depends on your healing abilities, quality of donor cornea and abilities of your surgeon to name just a few factors.

Stef23 wrote:Will I still, eventually, have to wear a scleral lens on the transplant eye?

Dont inkow anyone that wears a scleral lens, just because you needed one pre graft doesn't mean you'll need one post graft. The corneal shape will probably be distinctly different to what it was so any of the lenses you've had before might be inappropriate. Very much a case of see how the healing process goes.

Stef23 wrote:How long before I can return to work?

Depends on what you do, if you do a lot of heavly lifting it could be six weeks or more, if it is a desk job and getting too and from work is easy, it could be a matter of weeks. Working in a very dusy environment it could be much longer. Here youe really need to be guided by how you feel post graft and follow the advice of your health care providers.

Stef23 wrote:My employers have been OK so far but I am worried that I will lose my job if I have to keep taking time off.

My interpretation of the employers information provided by the KC group is that your employers have to make reasonable adjustments. The recovery period is often 12 - 18 months but hospital visits get less as time progresses. Would you employers sack someone if they had cancer and had to take time off for chemotherapy? I'd be very surprised if they did and a fact of life is that you are more likely to return to full health and good vision than someone being treated for cancer. As your employers have been good so far, I suggest you do as I have always done and give them a brief update of how each hospital visit went and when the next appointment is. It at least gives them oppertunity for both of you to plan work accordingly so any hospital visits have the least amount of disruption. Remember that it is in your employers best interest to keep you on as it could take a replacement for you 12 months to get up to speed with your job. It usuallu works out more cost effective to work with you. By looking after you, there is an increased chance of you staying loyal to them and once your vision is sorted you may well be working more productively than you were pre graft.

Ask these same questions of your consultant to.