Bit anxious

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Green
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Bit anxious

Postby Green » Fri 17 Jun 2022 1:55 pm

I've got a DMEK for PK re-graft failure (and cataract), coming up in a couple of months. I'm anxious about this because I'm guessing this is the last chance for that eye, but I'm also worried about immediate post-op because of what happened after the re-graft.
I had immense pain immediately with the previous regraft, it was 10/10 pain which I had no expectation of because grafts are not associated with pain.
I really didn't want to move, I just wanted to lie flat & still.
I couldn't open the other eye because it caused more pain into the operated eye. I have no idea why this occurred.
So I had to leave fully blind, the cab driver drove as slowly as he legally could which doubled the journey time but every single movement hurt, it was excruciating and distressing.
I had this level of pain for a few days then it lessened but still some pain for a few weeks before it stopped.

I'm not assuming that will happen again, but obviously it's hard to not think of it as a possibility. It was very distressing, especially that journey home.
Moorfields don't appear to have the 'hostel' anymore and even if they did my understanding was no one could stay with you, given I was fully blind that wouldn't have worked.
The cheapest hotel nearby is the Premier Inn but I could book it and not need it and lose my money, as you can only cancel up to 1pm.

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Anne Klepacz
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Re: Bit anxious

Postby Anne Klepacz » Sun 19 Jun 2022 10:45 am

That was a horrible experience. But like you say (and know from your previous grafts) pain isn't usually associated with transplant surgery and the level of pain you had is highly unusual. I wonder if having a DMEK, which involves replacing just the back of the cornea, means the chances of it happening again are even less likely? Did you ever ask about why it might have happened? But of course it's hard not to be anxious. Have you got another clinic appointment before your surgery date? If not, could you ring one of the corneal nurses or maybe one of the nurse counsellors at Moorfields to talk about whether there could be a contingency plan for the day, just in case. I'm assuming you will have someone with you on the day of surgery? Hopefully things will go much more smoothly this time. I know everyone here will be rooting for you.

Green
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Re: Bit anxious

Postby Green » Sun 19 Jun 2022 11:24 am

Yes Anne I was really shocked to experience that pain, I wasn't prepared for it, and as you rightly say it's not associated with grafts. I am hoping this DMEK & cataract op will be a normal experience.
I tried to ask once in clinic but received no answer, and the consultant I was under at that time was unapproachable.
On the ward before I left, it was clear how much pain I was in and being unable to open my other eye. I asked for more pain relief but I hadn't been written up for anti-emetics, it was an opiate I had no prior experience of so I was worried about risking it. The sister said she could not contact a doctor, so I had none.
I'm very happy with the consultant I have now but changing was a big deal and not easy even though I never complained. I guess I didn't want to say how traumatic it was last time because I was so relieved to be under a different consultant didn't want to rock the boat.
I thought I'd try to raise my concern with the anaesthetist on the day as pain relief is their specialist area.
I don't think Moorfields has any overnight provision for NHS patients now, maybe only for the most invasive procedure enucleation.
Yes my mum will travel home with me, don't think we're allowed to have anyone with us before surgery.
Thank you Anne


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