Should I or shouldn't I (have a cornea transplant)?

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Marc E Brown
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Should I or shouldn't I (have a cornea transplant)?

Postby Marc E Brown » Sun 10 Jun 2007 1:56 am

I have KC in both eyes. The vision in my left eye can be corrected with glasses to just about normal. The vision in my right eye, on the other hand, remains blurry, even with glasses. My only real problem is that my depth perception is poor, forcing me to leave the night driving to my wife.

I have not been able to tolerate contacts well. Intacs seem unlikely to do much for my right eye because my cornea is thin and the distortion is substantial.

On the bright side, my vision has been fairly stable in both eyes for a number of years, and there is no current threat of a rupture.
I am 54 and not fond of the idea of missing many days of work, having discomfort for weeks if not months, living under fear of a rejection, and, in general, risking being worse off than I am now. On the other hand, my right cornea is fairly thin and a cornea transplant may become more difficult if it gets thinner.

So what do you all think? Should I dive in and have a cornea transplant now? Or should I continue to put it off and hope that the vision in my left eye will remain correctable with glasses? I am having a heck of a time deciding what to do!

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piper
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Postby piper » Sun 10 Jun 2007 2:31 am

Marc, my fellow AMERICAN......here's what I think..we are similar ages, and my vision was BAD in both eyes, I have not driven after dark in years.....look, if you have a place to have a transplant AND if you have the money for a transplant AND you trust your Optham AND you have the patience for a transplant THEN DO IT NOW BEFORE HITLARY CLINTON screws up health care in America.....

You will be uncomfortable for a day.....back on the job in two days......just don't bend over or play bagpipes for a couple of weeks....there is virtually no pain, this is not abdominal surgery. I had something over 20-900 and was getting to where my left eye was not correctable, so off to the LSU Eye Center on April 19 for a DALK.....virtually no risk of rejection......now, less than two months out I am seeing probably 20-100 or better with that eye, no contact lens.... I was seeing 20-200 two days after the surgery and only one fuzzy image, not the dozens and dozens I was seeing before.

PM me if you llike and I'll give you my toll free phone number. I'd be happy to talk with you and fill you in a bit.....reading this forum is great: wonderful people, lots of support and good info, but the info relates to the Public Health Service in the UK, not the USA.....so contact me.

Piper

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GarethB
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Postby GarethB » Sun 10 Jun 2007 7:57 am

Marc,

Welcome to the forum.

In all honesty it is ony you that can make the decision!

All we can do here is share out experiences.

The operation is usaully a day thing and you are in the fortunate position of having good vision with glasses for the left eye.

Therefore if you were in the UK, then most people would be back at work within a week or two because you still have one good eye so you may well not notice much of a change.

Some here waited until the other eye started to deteriorate and unfortunatly it got worse quicker than expected so when they had their first garft, they had no useful vision in the other.

I am sure you are aware the aim of any surgery for KC is to improve the cornea shape so vision is easier to correct. Therefore you are still likely to need vision in that eye corrected with glasses or contact lenses.

Some questions you need ask is;

Have I exhausted all the non-surgery options?

Intacs seem unlikely to work, should I give them a try, they can always be removed and go for a graft?

What have I got to loose going for a graft?

You do not say what lenses you have tried, many here who have said lenses are hard to tolerate have then gone to try Sclerals with great ucces as in many cases the sclearl lens does not touch the cornea itself. Others have tried piggy backing, a soft lens on the cornea to protect from the harshness of an RGP lens.

I have not had intacs, but I was told there was noway glasses would work for me. That was 3 years ago, but lens technology for glasses has moved on and 6 months ago I was fitted with glasses. Not quite 20/20, but I can now drive OK with them and the vision is far better than the hospital thought I could get. Driving at night is not easy with them, but long journeys my wife do the sensible thing and sghare the driving. It is just I do the day shift and she does the night shift so I still feel I do my part.

Therefore you may have been told intacs are unlikly to work, well if your vision is that bad, what have you got to loose trying it?

For close work, I still find lenses is best but to get the wear time I need I often wear one lens at a time so my monocular vision changes from left to right. It took about 6 months to get used to, but it can be done and you learn what other visual cues to use for depth perception.

Although m,y motorport licence is suspended due to KC, I am still allowed to set the cars up for competition and I often do this with one vision in one eye only.

On the graft front, irritation is usually a week or two. You wont have too long off work, but then let me ask you this; If the operation is a success, what value do you put on days/weeks off work compared to the gift of sight?

If you have a deep anterior lamella keratoplasty (DALK) only the top few layers are grafted and the risk of rejection is nearly zero. A penetrating keratoplasty (PK) replaces all layers and then the risk of rejection is slight. Anyway if caught early, in most cases it is reversed and I know people who have one rejection episode and then no more. Rejection is most likely in the first couple years.

My grafts are neary 20 years old, never had rejection episodes, live life just like anyone who never had grafts. I nejoy my sight every day and am thankfull for it. Never worry about what might happen, live for today and every extra day of good vision is a bonus.

life is for living not existing.
Gareth

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Andrew MacLean
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Postby Andrew MacLean » Sun 10 Jun 2007 8:19 am

Marc

Like you, I waited until all other avenues had closed before beginning to contemplate a transplant. I was 53 when I had my first and 56 when I had my second. I am now 57.

As you already know, you are in control of the management of your condition.

I had been registered blind and was unable to wear any sort of contact lens before I agreed to talk to the ophthalmologist about surgery. I was still at work, and was able to return to work post transplant after a break of about 6 weeks; this would have been shorter if it were not for the fact that my ophthalmologist did not trust me to avoid putting excessive strain on his sewing over the Christmas Season.

You should consider the important issues for you. If you have questions, by all means rehearse them here, and when you have them sorted out in your own mind, write them down. Next time you visit your ophthalmologist, take a friend, partner, wife, brother, sister ... anyone you can trust to listen to what the ophthalmologist says in case you do not pick up properly what is being said in answer to your questions.

When i had my "decision" consultation for my right eye the ophthalmologist let me return to the waiting room three times so that I could go over the questions I had asked and the answers he had given.

After these repeated pauses and then my final time with him in the consulting room I agreed to proceed and he put me on the list for a transplant. I did not have to wait long from that date to my right eye transplant.

I have no regrets: neither for waiting so long, nor for agreeing to the surgery. Having been blind in both eyes I now see clearly through my right eye and will soon have sutures removed from my left.

Welcome to the forum, and all the best.

Andrew
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cherishu2
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Postby cherishu2 » Sun 10 Jun 2007 8:01 pm

i to waited until there were no other paths to take.
In fact i suppose its been left until i have nothing to lose.well that and giving birth.
I am registered blind in both eyes too.
sight is so bad i cant live life to the full, id say what gareth said rang very deeply. About living not existing.
The decision is yours ultimately, but if your sight affects your life then its proberbly graft time. And if there is no other lenses available.
mum to 7. Its a long story lol. cornea graft oct 19 2007.
Son with KC too
registerd blind 17th May 2007

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mike scott
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Postby mike scott » Mon 11 Jun 2007 4:15 pm

well slightly different in my case.

i have good corrected vision in my right eye but am now lens intolerant in my left, with the cornea being less than half normal thickness and apart from light and colours, no vision at all. I asked the question should i wait until my right eye was in the same position before i go for my graft? Andrew and Gareth both gave me the same advice, which was to have it done now while my right eye is still good and then should the right begin to fail then the grafted eye could cover for me so to speak.
after thinking about that advice ,it made complete sense as you would expect from these guys, and so with that advice and of course a very in depth list of questions for the consultant i am now waiting for my first graft.

yes i am extremeley nervous but am also sure that i am doing the right thing too.

welcome to the forum

mike
onwards and upwards


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