UK Keratoconus Self-Help and Support Association

My mum is in the process of deciding whether or not to have a corneal graft transplant. She has suffered with Kerataconus for over 20years. We have both read lots of leaflets and used the search function on this forum, but there are some questions that can only be answered by people who have been through it.

From your experiences how long does it take to gain any benefits? How has it changed your lives?

Does anyone regret having a corneal transplant and why?

How common is rejection? And for those who have been through it, what happened next? Did everything work out?

Is it very painful post op?

I've seen how much my mum has suffered with this over the years and I just want her to have a better
quality of life, but I want to make sure this is the best thing for her.

Many thanks in advance for your help.
Nadine

Hi Nadine, and welcome to the forum.

I've had 8 or 9 rejection episodes in my PK grafted eye, but I'll still say that the graft was the best thing that I could have done.

I was gaining more useful vision from my PK grafted eye from the morning after the operation. My DALK graft was 5 months ago, and still no useful vision yet, but things are certainly improving.

There was certainly irritation post-op, but not really any pain to speak of. The irritation had gone within a day or so.

Everyone is different though, so gain as much information as you can before letting your Mum make her decision. Remember that a graft is permanent; the various contact lens types are not.

Nadine.....the benefits are immediate, even if we all agree that vision is really unfocused for a while. With KC, one's vision is declining......with a graft it is on the mend, no matter what else. That fact alone is a good one to carry around with you as it is a liberating and positive thouoght. In my case, with a DALK, rejection is a slight, very slight possibility. There was no, let me say that again, THERE WAS NO PAIN.......I had the procedure on a Thursday, visited the doctor on firday to have him look at it.....and went home. I went to work on Monday, and did my best to do my work with my non-grafted eye.

the pictures you see of stitches look painful.....if done right, and the knots run in right, they don't hurt. Tell her that a deeply torn fingernail is 100-times worse.

Now, about nine weeks post graft, I am seeing much better with the graft eye than I do with the ungrafted eye and no contact. I can watch TV with my "new" eye in the evening when I take my contact uot of the other eye. I CAN READ AGAIN!!!! with the graft. Have not been able to read in years!!

Find a good, EXPERIENCED, trustworty, friendly specialist......and march forward into better times. By the way, my family is happier now that I have had a graft, because I am not the invalid I used to be around the house, and I have HOPE of recovery.

Best wishes to your mom......keep us informed how all this is working out for you both.

Cheers, Piper

Nadine

In answering your questions

From your experiences how long does it take to gain any benefits?

Very open. Some take 12-18 months, some more immediate. Example, I was able to get vision through glasses at 7 weeks after my graft; yet if you read on this site some waited well over a year before they could get anything

How has it changed your lives?

Oh boy where do you start. From being in a position where you can see people until there very close to you, people waving at you and you not noitcing, squinting to read basic things, losing confidence as your concerned thatw hen you go out you may not be able to see properly etc...to now being in a position where I wake up, put my glasses on and hey-ho off to work I go, without the stresses that were previously associated

Does anyone regret having a corneal transplant and why?

No. I dont...as it saved my livlihood, allowed me to work, and lead a more normal life...


How common is rejection?
Grey area as theres limited stats on this. However, if caught early it has an extremely high success rate in reversing the process of rejection. In fact a corneal transplant has the highest success rate of any transplant in the body


And for those who have been through it, what happened next?

Woke up with a little soreness as there was a minor complication during my procedure. Howeevr, the next 10 days I stayed at home, and then returned to work......over the course of the proceeding 3 months I had an avereage visit to the Opthamologist every 7-10 days.

Did everything work out?
Yes, for me it was the best decision I could have made, and in an ideal world I should have done it 6 months earlier

Is it very painful post op?
No, youll just feel a slight dull pain in the operated eye, when its opened it will feel scratchy and it will be red. However, everyones different. Some need to recovery longer from the anesthetic, whilst others are up and jiving in about 8 hours, some need pain killers, others dont...

One final thing I will say. If you have the choice, then go to an Opthamologist that has a reputation and also the experience for performing this procedure. A CT is an art, as its a very delicate process and needs alot of experience. I firmly beleive that the success if my graft was down to my Optham, and the recovery procedures and foods I ate after the procedure. This bit never gets covered by Opthamologists.....as its not their forte to comment on......

HTH

J

Hi Nadine

From a purely personal point of view/experience I'll try to answer your questions.

I benefitted from both my grafts from the moment they removed the patch the day following the ops. I went from not being able to see the chart at all to reading around four lines down. But from reading other people's experiences on here I'm just about the only one that's happened to. I've no explanation why.

They have totally changed my life. Without wanting to sound melodramatic they have given me my life back.

I have no regrets at all about having them done. I found the whole donor issue a bit hard to feel comfortable with - especially when I was on the waiting list over Christmas and I wondered if someone out there was unknowingly having their last Christmas and the following one I would have their cornea. I just found the whole thing hard to get my head round, but the benefits are so great that they totally outweigh any 'uncomfortableness' with the whole process.

Touch wood I've never had a rejection episode.

I found the first op the most painful thing I have ever gone through in my life. But again I appear to be very much in the minority on this. I was very worried when I had the second one done but it was much, much better - very sore rather than painful.

I hope this helps.

Hi Nadine

thank you for undertaking this research on your mother's behalf. She is blessed indeed to have such a concerned and attentive daughter.

You will have gathered from the posts here that the answers to your questions are not easy. but in addition to the things that have to be weighed in the decision to have the graft, your mother may also care to weigh another set of considerations: what would be the consequence of doing nothing?

I waited until I was blind in both eyes before having my first graft. This was my decision, deliberately taken, but it may not be a decision that your mother wants to take for herself.

all the best

Andrew

Thank you all so much for replying. I really appreciate you sharing your personal experiences, its been a great help. I relayed everything to my mum and she is really grateful. It makes a huge difference to have some support when going through this difficult decision process - my mum really finds it comforting.

Ooops , i forgot to ask quite an important question. Can anyone recommend a good Ophthalmic Surgeon at Moorfields? We saw Mr Gartry privately who recommended that my mother is a suitable candidate for CT. However rather than continuing on the expensive private road we are going to get referred via NHS. Recommendations would be much appreciated.

Nadine,

I'm sure that John Dart and Stephen Tuft both perform transplants at Moorfields; and I am also sure that there are many others (I know that Chad Rostron does it at Tooting (a branch of Moorfields), and Hanna Laganowski does it at Sidcup) too.

All the best,

You wont go wrong with Dr Gartry I can tell you that....he is renowned....

But please bear the following in mind, on the NHS you cannot ask for a particular Surgeon to do the procedure...its who ever is available on that day...unless of course some strings are pulled....