UK Keratoconus Self-Help and Support Association

Hi all. My husband suffers with kerataconus in both eyes. He is booked in to have a corneal transplant in his right eye and is having doubts about the operation. Is anyone able to give me positive advice or feedback from their own experience to reassure? I wasn't sure where to go and I don't know how to help him. It's such a huge decision. Thanks x

Hi Cheryl and welcome,
I'm someone who had transplants in both eyes (2 years apart) in my 30s and they certainly gave me my life back and enabled me to carry on working full time until I retired. It is a big decision, though in my case my vision was so bad even wearing my contact lenses that I really felt I had no option but to go for it. There can be lots of factors to think about - how bad is the vision with contact lenses? how much does the poor vision interfere with work, study, leading a normal life? is driving vision essential for the individual? how thin is the cornea - is there a risk of hydrops? is the other eye badly affected by keratoconus? You don't say what your husband's doubts are - if he or you would like to ring our helpline 020 8993 4759, I'll happily talk through the concerns. But of course any surgery has risks and there can never be 100% guarantees that a transplant will be successful. So it's a question of weighing up the pros and cons. What is true is that transplants done for keratoconus have the highest success rates compared to corneal transplants done for other eye conditions.
I hope some of that helps. I'll move this thread to the 'general discussion' part of this forum where more people are likely to see it. And hopefully some of our other members who have had transplants will join in the conversation.

Id personally as someone with a very negative experience of a transplant ensure you have exhausted ALL options before consideringn it, I wish I knew at the time what could potentially happen and go wrong, as all I could find online tehn (2010) was positive experiences.

Hi, I had my first and only transplant just over a year ago. It will be helpful if I explain my background because everyone's situation is different. I had KC in both eyes for 30+ years but both had been managed with progressive refittings of different contact lenses over the years. The vision in my right eye was always not so good, and was earmarked for a graft at some point. The hospital advice has been consistently "put it off as long as you can". Then I had a hydrops in my left eye (2 years ago), we had to wait for that to settle down. After 8 months the decision was clear it needed to be sorted with a graft despite fitting a new lens (scleral), I was only achieving 6/18 and was partially "foggy". I am now 13 months after graft.

Discuss any concerns with the surgeon and at your pre-op assessment.

Relax, the procedure went well I checked in the hospital at 12 noon and was on the train home (! hour) at 7 pm. Every patient is going to be different and may have pre-existing conditions that could affect the outcome. The surgeon cannot predict how your body is going to react to the "foreign" tissue of the new cornea (but you are given drops for that.) After the operation, take it easy for the first week, get plenty of rest and use the drops you are given exactly as instructed. Keep everything meticulously clean. Don't rush back to work (if necessary get your GP to sign you off). Some people go back after a couple of weeks - but I think that is optimistic. You go back when you are medically ready, and then maybe shorter hours depending on what you do.

My situation is more complicated because I have always been longsighted and needed to wait for things to heal enough for a new scleral lens to be fitted. Some are lucky and don't need lenses or spectacles. I had a new lens at 6 months post-op and now well within the driving standard. 6/18 to 6/6 in 6 months has been a good outcome for me, and my right eye can now wait a while longer.

There is some good reading here if you have not seen it https://www.keratoconus-group.org.uk/index.php/when-to-go-for-the-transplant/

Hi Cheryl,

did your husband finally be operated to get a corneal transplant?
What type of operation did the surgeon consider, deep anterior lamellar keratoplasty or penetrating keratoplasty?

Philippe