UK Keratoconus Self-Help and Support Association

Hey everyone, I hope you're all well. On Monday I had the graft in my left eye and I ended up staying overnight due to other health issues, yesterday I was discharged and I didn't see the consulaltant a single time post-op despite the wards best efforts to get hold of him.

I've had no post op care and I have no idea what I should or shouldn't expect or what I can or cannot do. I'm completely lost and worried and I didn't start the eye drops for rejection prevention until over 24 hours after the operation. So I'm very concerned. I had DALK and I only know this because it's on my prescription letter.

Can anyone here help me? What should I be doing? My eye is aching and constantly watering, should I be worried about that? Should I be trying to use my eye or do I keep it closed as much as possible?

I'm sorry if all of this is basic stuff but I've been left to work it all out for myself because I've had no help from the consultant, trying to get hold of him is lile trying to get blood from a stone atm. I just want to stop stressing

Thank you.

Oh dear Cab, not a fine experience to go through. Someone will be here soon no doubt to give you some proper advice (I’ve not had a graft so can’t help unfortunately) but I hope you recover well and soon.

Keep positive and look after yourself

Hi cab1337

Sorry to read your story. You don't mention which hospital, not because we should start 'hospital bashing', but there is a chance someone else has been seen there on the forum and knows how things work.

Normally you and your GP should both get a discharge letter (which may be exactly the same). That should explain what has been done and post-op management. Most consultants (or their team) arrange to see you within a week of surgery. You should have a telephone number for the ward (or get it from the hospital) if you have any concerns in the first few days.

Commonly you are given two sets of drops, one is a steroid (something like Dexamethasone or Maxidex) and the other an antibiotic to prevent infection. It is important that these are used as indicated on the bottle. If you are still in any doubt you could try the hospital's Pharmacy (who are usually easier to get hold of).

If all else fails, check the hospital's website for a nurse-led helpline or even A&E to make initial contact.

Practically get as much rest as you can for a few days. Laying down is really the best and try an audiobook/music. Definitely use normal painkillers as they may well reduce the discomfort. If it is more comfortable with your eye closed, do so.

Do come back to us. Clearly, we can't give you specific medical advice but we will try and point you n the right direction.

Graham

Thank you RedOnion, I'm trying to stay as positive as possible

Thank you too Graham, I did finally manage to get in contact with a consultant, not mine but another of the hospitals eye specialists. He helped ease some of my concerns with the watering and uncomfortable aching I have, telling me its normal and to rest/use my eye shield if I feel worried about any discomfort.

I was given 2 drops, Maxitrol and Clinitas Gel. I've been told I can use the gel more than 4 times a day if I feel I need to and the maxitrol is my steroid/antibiotic which I take 1 drop 6 times a day.

This was done at the Heath hospital in Cardiff, every step of the way they were brilliant but the after care was lacking but the doctor explained what happened over the phone which I now understand, basically covid related stuff and I was in a green zone ward where everyone had tested negative a day before arrival but the surgeons were in a red zone, meaning they were not allowed to visit green zone areas.

I'm feeling optimistic now at least, a lot more than I was earlier today. I've been laying down a lot just watching films trying to look after this new cornea as best as I can. I'm due to see the consultant on Monday, hopefully everything will be OK.

That’s good to hear, as I say I can’t relate to grafts but I remember my CXL was unnerving at first and spending my days in a dark room with music playing almost 24/7! Well I never really slept properly for a few days so it just stayed on. But we all get through it in the end. The optimism will honestly help and to be honest, try and enjoy your relaxation as best as you can!

Please keep us posted with how you get on and good luck with it

That's all encouraging to hear and for you. The best tip I can give you us be rigorous with your drops. Bring regular and not missing a dude is important. Some of us use alarms on our mobile phone which can work well. The Clinitas should be good for relieving any irritation, in fact keeping it moist should stop problems before they start.

Graham

Just thought I'd give a quick update on my experiences so far. I've increased the amount of times I use the Clinitas Gel as suggested here and by a doctor, I still get a very dull ache, like the type of pain you feel a few mins after poking yourself in the eye but it's manageable, more annoying than anything really.

My eye still waters a lot, especially when I open it to put the drops in which I guess only 3 days after surgery that should be expected. Gotta take baby steps.

I've been resting a lot with music and films, just generally keeping myself occupied but not causing strain.

Now for the best news, though a very minor thing, while I was cleaning the eye, I had my phone on mirror mode so I could zoom in and see what I was doing better and for a very short second, my eye focussed on the time in the top corner, it was a little blurry but I could read it, something I haven't been able to do with this eye for years! Although minimal in the grand scheme of things right now, that was huge for me.

Still a long way to go but I'm so much more positive now than I was when I first made this thread. Thank you guys, I'll keep updating as I progress

Some encouraging signs there. It sounds like a bit of bruising which is not uncommon and not unexpected considering what's been done.

Take care and keep resting.

Graham

Sounding good there, very positive news. Early days still but it’s sounding encouraging, I’m sure you’ll be able to update us in time with even better news!

Look after yourself and keep resting

Sorry its been so long since my last update. Not too much to tell really. I had my 1 week check up, everything looked great and I was advised I could lower the usage of the steroid drops from 6 times a day to 4 starting this week.

My eye is still closed for 95% of the day, not through pain but just light sensitivity. After about 10 seconds of opening, both my eyes start watering until I shut my left again. I'm slowly increasing the time I have it open though, trying to get over the light sensitivity by using it more, it will just take some time I guess.

Other than that, all very smooth so far, slight discomfort from the stitches but the eye gel helps with that. Still have 2 1/2 weeks off of work before my next review but I could be returning soon.

Thanks