UK Keratoconus Self-Help and Support Association

Hi
I had a corneal transplant on 6/10/10 and im trying to make some understanding of the situation. As far as im aware, everything is going well but im beginning to feel like im alienating everyone around me by babbling on about it all the time. Im probably just stressing because of the amount of different drugs im currently taking to stop rejection and the fact that i only had a scleral graft on the 20/9/10 which hasnt worked leading to the corneal graft but am i normal to freak out this much??? Is it normal not to quite understand that despite knowing ive had a condition for 14 months, that to suddenly be told that id be having an operation in 3 weeks, for that not to work, then to be told that id be having a corneal patch graft and after being woken in immense pain to be told the next day that instead everything had been changed during the op and that they had done the full corneal transplant and that im now on long term immunosuppressants and currently on a high dosage of steroids. Has/did anyone feel this way following a transplant as im beginning to like i said alienate everyone around me and im not sure if im suposed to feel this way or if its the drugs...? I no longer know what normal is or if this is how im suposed to feel?? Would it be normal to act normal and accept that i have someone elses flesh in my eye and that this is the way life is going to be at the age of 24 that im going to have a low immune system etc and maybe change my lifestyle (which has already recently been altered by not being able to work etc since the 1st operation and still currently unable to work or even think about being able to go out with friends like normal.) Sorry to rant but i dont really feel i know anyone else who could or would understand how i feel....??
Any help / support / suggestions would be greatly appreciated!!
Jo

Hello Jo and welcome to the forum
It seems quite normal to me to be stressing just 3 days after a corneal graft operation that you weren't expecting! It's very early days after the op, and I'm sure things will start to settle down. I'm a bit puzzled by some of the things you say. I haven't come across anyone having a scleral graft for KC before - can you tell us any more about why that was the first step? And what were you told about long term immuno suppresants? For most of us, anti rejection drops are taken for 6 months to a year. Do you have any other health conditions which mean you're more at risk of rejection?
It's over 20 years since I had my corneal grafts so I don't qualify as a 'recent' transplantee! But I do remember it taking several weeks after each op to get back to feeling more or less normal (at least partly because of the after effects of a general anaesthetic). I'm sure we all vary in how we react to a graft. I was just very grateful to be given the chance to have good sight again and have always felt that the graft was part of me. But I know not everyone feels the same. And the changes in my lifestyle after the grafts were all for the better. With good corrected sight working full time was no longer an ordeal and I could even go out with friends after work (impossible before the grafts because of limited lens wear). So don't be so hard on yourself at this very early stage. It sounds as though everything was a bit of a shock and not what you expected, so it's not surprising you're having a reaction now. There's lots of people here with more recent experience of a graft and I'm sure they'll understand how you're feeling.
All the very best
Anne

Thanks anne.
I had a thinning of the cornea due to occular rosacea but ive had so many different conditions thrown at me in the last 14 months i now have no idea which is the term for what i have (but keratoconus was one of the titles ive had). Its very reassuring to know im not the only person who feels a bit weird. Im trying to put alot of this down to the medication as one minute im fine and then the next (mostly when tired), i tend to find myself slightly unstable emotionally. If anyone else can also shed some info on feelings following a transplant that would be great!!

Jo

Welcome to the forum. I guess we all tend to 'babble on' about our transplants at first; the realization that somebody has agreed to tissue from someone they loved and who as recently died being used to help restore good sight to us is a bit overwhelming.

It takes time for transplanted tissue to settle down. Don't worry if your sight is not immediately perfect. In time, your sutures will come out, and it will take a bit for your sight to settle down again after that.

Every good wish as you embark on this journey.

Andrew

Hi Jo

I had a transplant done 2 years ago on wednesday.
It did feel very wierd at the time that i had someone elses cornea, i used to joke that it might be from a girl and i might start drinking barcadi breezers as a result, but so far so good

Initially i was off work for 7 weeks recovering, the first 4 of which i made myself bed bound so as not to stress the graft. The whole ordeal was far more stressful and upsetting than i could have guessed. i was on immuno suppresants for 12 months in total and have not had to apply any since,
I am now getting 20:20 corrected vision and am about to get on the waiting list for my second eye.

The questions, confusion and stress will relieve over time, i assure you. The best thing you can do for now is to relax, enjoy the time off work and let your cornea heal properly during the most critical first 4 weeks.

Here is the link to my blog that i filled in for the first week post graft. http://www.corneatransplant.blogspot.com/

All the best.
Tom