Corneal Graft Pain and Irritation // advice?

[laurajm]

Hi Guys

This is my first post. I had my corneal graft in my left eye done in May, with a folloup appointment cancelled in June and rescheduled for tomorrow. This has left me since May with no one to talk to about how i am feeling and if it is normal.

My left eye flares up with pain and irriation, very bad light sensitivity, and feels like there is something under the eye lids. If i close my eye the pain eases, and after 4-5 hours it stops being painful again. When it flares up my eye appears red and looks a bit puffy. When i have mentioned this to my specialist just a week after the operation (it was so painful i went straight in fearing rejection) she prescribed artifical tears. My vision seemed to have improved a lot, though i still cannot see things without glasses and struggle watching TV or reading for any period of time.

Recently i have noticed my eye seems cloudy and my vision is affected. It feels really cloudy and like a film is over the eye and i cannot see out of it. Both of my eyes are badly affected with KC and whilst i can see i can only see things cloudy. This has been like this for a few days.

Sometimes i wish i had not had this done as it hurts so much some times and it can be very difficult as i know no one who has been through this to ask if this pain/irritiation/vision levels are normal. Today is a bad day for my eye, and i could not see the screen, so i have had to get my husband to write this post for me. I do hope someone, perhaps who has had a corneal transplant, can help with some advice or just their experiences so i know if this is right. I will notify you guys of how it goes with the specialist tomorrow but in the meantime if there is anyone who can post, that would make me feel less alone in this condition.

Thank you for reading this post, and i hope you understand today is a just one of the bad day, but other days are not always this bad. I hope to share my experiences for others, and could do with a bit of help/advice.

The eye drops i use are:
Artifical tears (cant remember the name of these!)
Dexamethasone 0.1%
Chloramphenicol 0.5%

Thank you!
Laura

[rosemary johnson]

Hi Laura, and welcome to the forums.
I had a graft in January and I'm regretting it too, but for different reason ... long story.
I thin it is good you have an appointment tomorrow. Cloudy vision can be a warning sign of an imminent rejection, so if you didn't have an appointment, I'd be suggesting you get yourself to Eye A&E as soon as possible.
So are redness, pain, getting more sensitive, streaming, etc.
I hope it is nothing serious and the consultant can sort you out tomorrow - please do keep us posted how you get on.
My grafted eye still feels dry and itchy all too often - like "I can't wait to get home and take this contact lens out" and then I remember I don't have one it in!
It's also more light sensitive - as if, when I look up the street and there are car headlamps coming towars me, say, and the floodlights from the car sales places at the corner of the street, its like now the vision is a bit better focuessed, the pain is more focussed too.
As regards vision - this is likely to keep changing over the first year or so, or even more - and it's quite likely you'll still need glass or lenses. 6 months post graft I can read at about 5" distance, but further is still a blur and full of multiple images - also very astigmatic (about -8 in one axis and -14 in the other). The grafts, for most of us just make it easier to fit glasses/contacts and don't give us perfect vision unaided, so that is nothing unusual for you, I@m afraid.
Please do talk about the pain and the cloudiness with the "professionals" though - and best ishes, hope it all gts sorted out.
Rosemary

[Andrew MacLean]

laurajm

Welcome to the forum, and congratulations on having found us.

I really find it alarming that they cancelled your follow up appointment after your surgery? You are only today going to see a surgeon after having surgery in May? If it were me, I would think this delay completely unacceptable, and I'd want to ask serious questions of my ophthalmologist about the reason for the delay.

It may be that they had in mind that you would attend ophthalmology casualty if things started to go wrong, but even though this would be a good thing to do, there ought to have been some routine clinic before now.

The general advice is that if there is any of the following symptoms, or if more than one is present, you ought to seek immediate help from ophthalmology casualty:

R S V P
■ Redness
■ Sensitivity to light
■ Vision changes
■ Pain

All the best today, let us know how you get on.

Yours aye

Andrew

[laurajm]

UPDATE:

Hiya, i am writing on behalf of Laura just to let everyone know the situation...

Bad news: She went to the appointment and i am afraid it is certainly rejecting. They currently have her admitted and will do for some more days to come. They are giving her loads of drops and steriods and trying to stop the rejection. They seemed worried by the rapid nature of her rejection, and i have already had cause for concern when told the specialist who did the operation could not see laura until Thursday this week, even knowing the fact she is suffering rejection.

The biggest part that has upset me has been that i was never told the symptoms and clearly when we got concerned, a day before the appointment, it was rather late. I feel that they should have told me more about the procedure and again perhaps about the condition. Everything we know about KC has come from this site or from brief discussions with opticians (yes, no real consultants appintments to speak of).

Background / rant: Laura has always had bad eyesight and needed glasses to do work or close up things when i met her in 2004, but the opticians grew concerned when they could no longer do a prescription for her right eye and sent her to the eye department of the hospital. That appointment led to another one where she was told she had KC. She had been briefly told this was a possibility by various opticians but this was the first confirmation from a specialist. The consultant put her on the list immediatly for a graft. Fast forward to May, and top of the waiting list. She was they before her opertation having had no real talk about what she would feel or suffer and they cancelled saying her consultant had "unforseen personal leave". It was rebooked and she saw her consultant for the third time only when she operated that very morning. Her follow up was cancelled for similar reasons. It was not until Monday 4th that they saw her again. I am disapointed this has gone with such little advice from specialists. I had expected to have seen a consultant lots and got a good deal of information and perhaps some leaflet or something and maybe put in touch with a help group or something...after all this is someone who has gone from being able to see without glasses for the most part to someone who cannot see faces or read in just a few years and now facing rejection.

One of the things i do know is that she is OH+ blood group. I do not know how this affects rejection or things like that but i always thought OH+ meant she could only have organs from OH+ group. I know that the Blood Donor service used to love her as they can use O+ on anyone, but i do not know...Any thoughts?

They hope to keep the eye from rejecting and i hope it is not too late. I hope this consultant takes the time to ensure she does not lose this cornea. I do not know what happens if it does reject. Has anyone suffered from this kind of thing before? I always thought it was 98% sucess rate for corneal graft?? Is this right...is it just unlucky?

On a strange twist, she can actually still see better now even with it totally milky and clouded over than she could before she had the operation. Her words were "100 times better even if everything looks like a misted window"...there is some irony here, i am sure!

I shall keep updating the group for what its worth, and perhaps i might learn some more along the way, to help laura and i am sure this can act as a reaffirmation of the information a surgeon gives (or is meant to) about the signs of rejection. RSVP...I shall always remember that now, thanks Andrew. I would say everyone and partners included should be on the lookout for these, but i guess people are, which is good. I wish i knew earlier but i hope it caught early enough to do good. Has anyone ever had a rejection on this group?

Yours,

Adam

[Andrew MacLean]

Adam

Thank you for keeping us up to date with Laura's situation. Let us hope that they are able to turn around the rejection episode.

Meantime, if you are concerned about the quality of her care you have a perfect right to ask for her to be transferred to the list of another NHS consultant.

Rejection episodes are not all that uncommon. Some people in the forum have lived through several, and have emerged with their corneas intact and their vision good.

Andrew

[rosemary johnson]

Adam,
Manythanks for the update, and indeed the background info.
COntinued best wishes for Laura. I hope they turn the rejection round. I gather that rejection episodes can be and often are turned round satisfactorily, and hope this is one of them.
Please do keep us posted.
The background does not sound too good - I only met my consultant (now former consultant, but that's another story!) on the day of the op, but had certainly had plenty of chances to ask his deputy loadsa questions, and got given a copy of a paper about transplants and the procedures, risks, etc at a pre-op appointment - and indeed had long ago found this group, heard much through it and even been given a copy of the paper by someone in the group already!
I'm surprised she should have gone straight from diagnosis to being put straight onto the transplant list within so few years - but then, I hadn't seen what state her eye was in.....
I can actually believe the vision is better than before even with the mistiness, from personal experience. Of a graft, that is..... fortunately I'm not yet one of those with (physical!) rejection experience; my misty bits have so far cleared up again after a while when I take the new contact lens out.
Anyway, I do hope that Laura is on the mend very soon.
Good luck if she does try changing consultant - I can't really comment on what's been going on "behind the scenes" there, but it does sound as if there is not a very good therapeutic doctor-patient relationship in existence.
Rosemary