# New Cornea, but it's not working yet



## ChrisandJohn (Feb 3, 2008)

Last week I had a corneal transplant in my left eye. Stayed in hospital overnight then home. The next day I had to go back to see the surgeon and he pronounced it 'perfect'. At the moment though the sight in that eye is terrible, I can just see light. I know it's supposed to improve over the next 3 months or so but thought it should have started to clear a bit by now. I see the surgeon again on Tuesday, when it will be 2 weeks since the graft, so perhaps I'll be reassured then.

In the meantime I have poor vision in one eye (the right, as yet untreated eye) with which to use my computer, so I've been rationing my visits here. Hope I'm not missing much.


Chris


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## SilverF1 (Feb 27, 2009)

Hope Christmas does bring a better outlook for you, no pun intended. Good luck with it.


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## UncleNorm (May 1, 2005)

Hi Chris! I too hope it works out well for you. Give it time, but not too much! I hope to goodness that your man CAN reassure you. 

Good luck!


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## suedew (May 10, 2005)

Son had a corneal graft 6 years ago, took about a year for it to settle down, fortunately at the moment his other eye does not require treatment. 
He has to wear a contact though but perhaps his was done for a different reason, he has kerataconus.
Hope all goes well with you.

sue


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## ChrisandJohn (Feb 3, 2008)

Thanks for your good wishes, SilverF1, UncleNorm and Sue.

It's interesting to hear about your son, Sue. By coincidence my daughter also had a corneal transplant 2 years ago for a totally different reason from me. She developed an infection / ulcer in her eye after a long flight during which she probably left her contact lenses in for too long. This damaged her cornea.

My condition is Fuch's Endothelial Dystrophy, the same condition as the man in this link. I also had the same partial graft called a DSEK, in which only one layer of the cornea is replaced. My daughter had the full thickness corneal graft in which stitches are used. This is said to take a year or so for the eye to settle down from but the DSEK should be quicker both to repair from surgery and to gain good vision. We shall see! No pun intended. :lol:

I do look a bit like this :wink: at the moment. Over-sensitivity to light is is one of the symptoms of my condition and it's particularly affecting the grafted eye at the moment so I'm tending to hold it closed. I've been shopping in Lidl and Morisons today wearing wraparound sunglasses over my own glasses to protect me from the glare of the strip lighting. Sometimes I'll wear a peaked cap as well! 8) :roll:

Chris


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## rowley (May 14, 2005)

Here is hoping that your vision soon picks up Chris. Best wishes.


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## UncleNorm (May 1, 2005)

Just remember, Chris, Rome wasn't built in a day... it took at least two!! :roll: :wink: Be patient and judge your progress in a couple of months' time!! :lol:


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## rosalan (Aug 24, 2009)

All the very best Chris. There are few of our senses that we treasure more than sight so I can appreciate your concern over the slow improvement but were you able to go back and compare how it was just after the operation, you should, I hope, be able to detect some hopeful signs.
Please keep us in touch with your results.
A Happy Christmas and an even better New Year
Alan


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## ChrisandJohn (Feb 3, 2008)

Thanks for your encouragement, Rowley, Norm and Alan.

On Tuesday, when I see the surgeon again, I'll really check what kind of progress I can expect. When I last saw him it was only 2 days after the operation and I asked what normal progress would be. He mentioned 3 months and I took that to mean that by then I'll be getting the better vision that I had the operation for. At the moment there is a long way to go before it gets as good as it was immediately before the operation!

So far there doesn't seem to be any improvement from the day the dressing was taken off. It does appear to be slightly better in the afternoon and evening, but by the next morning it's back to square one. If this is all I can expect at the moment then that's fine, I can be patient, my fear is that it isn't working as it should. I should get a clearer idea of what to expect on Tuesday. :? 


Chris


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## Hezbez (Feb 7, 2009)

Isn't it amazing what they can do for your eyes now.
I don't think most of us realise just how much we take our sight for granted when it's working properly.

Hope thing's improve for you Chris.


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## ChrisandJohn (Feb 3, 2008)

Hezbez said:


> Isn't it amazing what they can do for your eyes now.
> I don't think most of us realise just how much we take our sight for granted when it's working properly.
> 
> Hope thing's improve for you Chris.


Apparently the first corneal transplant was in 1905, according to this Wikipedia article, which I think is pretty amazing. The DSEK version that I had, where only some of the layers of the cornea are replaced is more recent and must use quite sophisticated microtechnology.

Chris


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## makems (Jul 26, 2010)

The RNIB website has the following to say about postoperative progress:

_"When the eyepad is removed after the operation you may find that your vision will be blurred. This is quite normal. Your eye may also be a bit watery and sensitive to light. You will be given eye drops to use, some of which you may require for months and years. The drops help to reduce the likelihood that your body will reject the transplant. It can take more than a year for the transplant to heal completely.

A few months after the operation, it may be necessary to have either spectacles or contact lenses to obtain the best possible vision from the transplant. However, your vision may fluctuate as the transplant heals." _

So basically you need to give it time - up to a year!

I have considered a corneal transplant as my right cornea has been damaged from repeated corneal ulcers which have left the surface uneven - a bit like a ploughed field!
I deceided not to proceed as the virus that causes the ulcers will still be in my body and could (probably will) damage the new cornea leaving me back in the same position in a few years.

Hope that helps.
Mike


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## ChrisandJohn (Feb 3, 2008)

I had a routine appointment with the surgeon again on Tuesday and he is still pleased with the way the graft has taken. I can now discontinue the anti-biotic drops as my eye has healed sufficiently for infection not to be a risk.

I continue with the two hourly during the day steroid drops to prevent rejection and in addition I've been given two other sort of drops to try to speed up the process of my eye clearing. I think the doc was perhaps expecting it to be clearing better by now but doesn't seem worried about it so I'm not worrying either.

Makems, thanks for the RNIB link. I think though the information they gave about recovery relates to the full thickness corneal grafts, where the entire cornea is replaced. This has to be stitched in position and individual stitches are often removed over time and the shape of the cornea might shift, possibly causing problems with astigmatism. My graft was partial and lots less invasive. Only the layer of the cornea that I need (the epithileum which pumps away excess fluid) has been replaced. I started out with blurred / misty vision, in both eyes. I now have the same blurred / misty vision in my right eye and extremely misty vision in my left. It is like trying to look out of a completely misted up window, but what I can see depends on the direction of the light. If I'm looking towards light I can't see my hand when it's six inches in front of my face. When the light is behind me I can see my hand and count my fingers if they are held against something of a contrasting colour / tone. What I'm trying to do here of course is work out some sort of objective way of measuring improvement, as at times it doesn't seem any better than when they took the dressing off in the extremely brightly lit hospital ward. At other times I think I can see an improvement but I'm not sure how much is just a change in lighting conditions. Next appointment is 5th Jan so I'll see what is said then. Meanwhile I'm getting used to mainly one-eyed vision or :wink: or using sunglasses. 8) 


Chris


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## rosalan (Aug 24, 2009)

You could create something like the old television test card.
They used horizontal and vertical lines that were drawn with various degrees of closeness. This enabled the tv technician to adjust the set to get the best focus.
Try not to be too ambitious, perhaps using broad felt-tip black lines to begin with, getting closer and closer together. The gaps initially too close for you to detect but as you sight clears over time, you may be able to detect the finer gaps.
Just an idea... I hope it may be of some help.
Alan


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## UncleNorm (May 1, 2005)

When I was in junior school teaching, I often complained to the headteacher that I wasn't making much progress with the kiddies. He would respond by saying, "Ah, you judge the children everyday so you see little improvement. I judge them maybe every fortnight or month, and I do see great progress."

The head's comments I found very reassuring. I learnt to be more patient, and started making my own judgments less frequently.

So Chris, be patient and please stop expecting progress from one day to the next. 

Yeh, I know... easier said than done! :roll: :wink:


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## ChrisandJohn (Feb 3, 2008)

*Update*

Update

In January I had two hospital appointments but saw a different, rather taciturn, consultant as mine had had an accident and was on sick leave. Mistiness continues as before but I was just told to carry on with the drops until the next appointment.

On Friday I had yet another appointment with another consultant (mine still off sick). This one was brilliant, she did a scan of my eye and could see the donor cells were not attaching themselves and operating as they should. Basically, the graft has failed, as I had suspected for some time, but it hasn't been rejected.

The plan now is another appointment in four weeks, either with my original surgeon or, if he's still on leave, with the one I've just seen. She feels it would not be a good idea to repeat the operation with another partial graft (DSEK) but if I want further surgery it would be best to have the full thickness corneal graft (PK). She did add, as I suppose they have to, that any eye surgery carries a 1 in 1000 risk of infection leading to the loss of the eye.

I was of course disappointed, to say the least, but I was also relieved that the problem was finally acknowledged. If I have the PK it really will take about a year to eighteen months to recover vision properly. At the moment the eye with the graft doesn't give me any useful vision. My visual acuity with the other eye is 6/18, which means that from a distance of 6 metres I can see what a person with 'normal' vision can see from 18 metres.

I've allowed myself a day and a half to feel miserable about all this but that doesn't do any good so I'm now being positive. We have a trip to France planned for April. We thought we'd try to fit two in as we usually go in September, but hopefully I'll have just had my second new cornea by the end of the summer so a UK tour then might be better.

Chris


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## MrsW (Feb 8, 2009)

Sorry to see things haven't gone well with the transplant and that you may well need further surgery. I hope that whatever descision you make will be the right one for you and your sight will soon be a bit better. Keep cheerful!


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## ChrisandJohn (Feb 3, 2008)

MrsW said:


> Sorry to see things haven't gone well with the transplant and that you may well need further surgery. I hope that whatever descision you make will be the right one for you and your sight will soon be a bit better. Keep cheerful!


Thanks MrsW

We had an excellent service recently from NHS Direct, by the way. We were staying with my son's family in Dorset when I ran out of the steroid eye drops. I had taken what I thought was a spare bottle but it turned out to be the anti-biotic drops which I no longer need (similar name, similar box). NHS Direct were able to give us details of a late night chemist in Dorchester and tell us what information they would need in order to let me have the medication without a prescription.

I hope the government's proposals for changing the service don't ruin what we already have.

Chris


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## sparky20006 (Apr 18, 2011)

Hi Chris

don't get down. Absolutely anything to do with your eyes is a slow process. I've had trouble in the past. It's human nature to want a quick fix but eyes are so sensitive that the slightest messing with them can take ages to settle down.

If it ultimately doesn't map out then surely it can be done again? It's not a drawn out process surely.

I have been through the trauma of injections into the side of an eye so I know how ragged off you must be. Stick with it and (know it's easier to say than do ) try to be positive.

Paul


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## MrsW (Feb 8, 2009)

I'm glad NHS Direct were able to help you when you needed assistance recently Chris. I used to work for them as a Senior Nurse Advisor and it was a fairly thankless job so it's good to hear praise for them. I too hope that the government don't ruin the good bits of the NHS. Some bits don't work too well but others are superb and need protecting.


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## ChrisandJohn (Feb 3, 2008)

sparky20006 said:


> Hi Chris
> 
> don't get down. Absolutely anything to do with your eyes is a slow process. I've had trouble in the past. It's human nature to want a quick fix but eyes are so sensitive that the slightest messing with them can take ages to settle down.
> 
> ...


Ouch, injections in the eye sound painful. I must say one problem I haven't had is pain.

Yes, I probably can have another transplant but the process _is_ quite drawn out. It'll probably take about three months on the waiting list then, as I said, it can take a year to eighteen months for vision to settle down to a point where they're prepared to prescribe new spectacles. Once the first eye is successful and functioning OK I'd like the other one to be done. That could be another 18 months before I'd have two good eyes working together. So we're perhaps looking at 3 years here if all goes smoothly from now on.

I am being positive now, I sensed from quite early on that the graft wasn't working as it should and it has been frustrating getting that acknowledged. Now I know where I stand I can plan ahead better.
8)

Chris


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## ChrisandJohn (Feb 3, 2008)

Another update

In March my surgeon had told me he could schedule another corneal graft for me in early May, so off I went at the beginning of April for a few weeks in France. Whilst away his secretary rang me suggesting 12th June for my operation. 'Oh Dear, I thought (well, it wasn't quite 'Oh Dear'), that means I'll miss the Highland Gathering meet on 22nd June. A return phone call explaining my situation, including that this is a repeat graft and that I'll need that to heal before my other eye can be treated, and I was told they'd try to sort something.

I arrived home to a phone message to ring, and I've now been given 15th May as my operation date. So, I can still look forward to the summer solstice in Scotland if all goes well.

I also had an appointment with my surgeon yesterday and he removed the one and only stitch from last December's graft. The new graft will be of the full cornea and will require more stitches.


Chris


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## UncleNorm (May 1, 2005)

It sounds incredibly painful, Chris, and is clearly very frustrating for you. But you said you were being positive. Please continue with that attitude! :wink: 


Can't the NHS be helpful and accommodating at times? This time last year, I needed radiotherapy and hormone treatment. I let it be known to the Consultant that we had a ferry booked for the beginning of June (2011). Suddenly, the start date was through for the start of May 2011. Several people commented on our plans for a month in France and commented along the lines of "wasn't it nice to be seen so soon".


I sincerely hope that things work out as you want them to.

Good luck! :wink:


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## MrsW (Feb 8, 2009)

Chris I'm really glad you've got a date for the new transplant. I do hope it all goes well this time and that you soon have much better vision.


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## Penquin (Oct 15, 2007)

I am pleased that oft criticised NHS has apparently responded with humanity and concern for your overall well-being.  

Like others I hope it all goes well and that you will achieve trouble free crystal clear vision sooner rather than later!   

Best wishes, do keep us informed how things go, :wink: 

Dave


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## ChrisandJohn (Feb 3, 2008)

UncleNorm said:


> It sounds incredibly painful, Chris, and is clearly very frustrating for you. But you said you were being positive. Please continue with that attitude! :wink:
> 
> Can't the NHS be helpful and accommodating at times? This time last year, I needed radiotherapy and hormone treatment. I let it be known to the Consultant that we had a ferry booked for the beginning of June (2011). Suddenly, the start date was through for the start of May 2011. Several people commented on our plans for a month in France and commented along the lines of "wasn't it nice to be seen so soon".
> 
> ...


The condition, Fuch's Endothelial Dystrophy, isn't particularly painful for me. It can cause blistering of the corneal surface but whenever I've had that the pain is so momentary that it's over and done with in less than a second. I haven't had that for a while but my eye does feel swollen sometimes. This is due to the endothelial cells, which clear fluid from the cornea, dying off quicker than normal. So the symptoms for me are more visual than painful.

Having the stitch taken out wasn't painful either. He said it'd take a minute but I'm sure it took about three. I could hear him snipping away but the only problem for me was wondering what would happen if I blinked or moved my eyeball. I'm sure I didn't dare to breath. 8O :lol:

Thanks for good wishes everyone,

Chris


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