UK Keratoconus Self-Help and Support Association

I had a DMEK & Cataract recently to the eye with x2 failed PK grafts.
Since my last PK re-graft I experience severe post-op/post intervention pain, as in quite debilitating for nearly a week.
It was helpful to meet another patient who has also experienced extreme pain reactions which opiate painkillers do not touch. I wonder how common this is, why it happens, and whether there's any research into why some of us experience this?

I received excellent care, but I still wish there were overnight stay facilities at Moorfields, even a couple of rooms, 2 beds for pt & relative or friend, toilet, sink, microwave, kettle, mini fridge, for a nominal fee, no staff required. To be available for those of us who have track record of severe pain (also for people not living close by).
It's hard to go home blind unable to open the other eye with pain, cab journey movement & bumps causing more sharp pain when all you want to do is lie down. And then to repeat it the following day before 9am.
The list of nearby hotels do not come cheap.
Does anyone else have a view on this?

My graft had detached a bit, re-bubbling was attempted at the slit lamp (local anaesthetic, eye clamped open, forceps then injected air bubble to push the graft down).
Unfortunately I felt the forcep, jumped, and had a panic attack.
I felt bad for the Dr and apologised afterwards. Staff were very helpful & kind to me, a nurse in particular, letting me lie down and recover, my consultant also supportive saying it was no problem they'd seen it many times before. I appreciated that.

I had the re-bubbling done the following week under sedation & LA, the same anaesthetist, also highly commendable who listened to my fears and gave me painkillers with the sedation which was a good combination for me.
Sure I had the extreme pain again afterwards for 3 days back home (& lying flat to aid the re-bubbling), but I appreciated the good care from everyone.

Pain restarted a further 3 days later, I was concerned if there were a problem so used the video consultation service (that works well), saw a consultant in A&E who thought the front surface was dry and a bit rough, possibly the drying effects of steroid/antibiotic drops, so I'm using Hylo-Forte hourly, and hoping my scan tomorrow will show its re-attached.

Looks like it's mostly re-attached, so I'm hopeful

I've not had a DMEK, but have had two grafts one PK and the second a Femtosecond Laser-assisted DALK. If there is a 'trick' to travelling, obviously you need someone with you but be ready to go as soon as the hospital says you can leave.

I'm about 1.5 hours door-to-door by bus/underground and train. In the first 2-3 hours you still have the local anaesthetic in your eye and a bit of a 'bounce' after the general anaesthetic. Didn't seem as bad as I imagined it might, but pleased to see my bed when I arrived home!

I know it depends on the surgeon's clinic schedule but I did not need to go back for 2 days.

I'm glad your experience was good, but that doesn't change mine. I was ready to go, had to be accompanied, but I have severe pain from the point of recovery even after Oramorph and LA, please believe my experience, there is no trick with that kind of pain and I met another patient who has experienced the same. Some things can't be mitigated.

I'm finding my eye is not liking looking at the screen, it gets red & painful, even after a short period, I'm lubricating.
Any alternative to covering the eye eith my hand?
Shield is very plastic so that doesn't work for this, can't find anything of a plain cover, not sure skin will like it during day as well as night

*Shield is clear plastic

I've used a variety of eye patches - most chemists stock them. The most widely available is a black 'pirate's) patch but I've also got one made of thin plastic (not see through). There's probably more choice online. I remember being very light sensitive post graft for several weeks, but it should settle down in time.

Thanks Anne, I'm going to try that, might get an inflatable shoulder parrot too!!
I wish I could find no prescription glasses with one side blacked out

The pain is really hard to cope with there's no let up

I think you need to go back to A&E, I've found evenings and weekends a a good time to turn up.