Mum’s getting a corneal transplant this week (finally)!

[babykera]

First time posting on this forum, though I’ve tried getting my mum to join! (I don’t have keratoconus).

My mum has keratoconus and she’s finally had the call to say she’s to go in on Tuesday for a corneal transplant! She made her mind up a couple of years ago and went on the waiting list, but with covid it’s been a bit tricky and everything’s been pushed back. She’s starting to panic a bit, and I’m just wondering how to reassure her before the surgery (<48h). What would you guys with keratoconus find most helpful if you were/have been in this situation?
I’m putting together a little care package for post-op to help her out: waterproof eye patches for in the shower (I’ll be washing her hair over the bath when it needs doing), dry shampoo, her favourite chocolates, a fancy relaxing candle, cooling gel eye mask, flowers, audible gift care, MASSIVE (funny) moonpig card. But not sure about what else to add. Obviously me and my dad will be taking care of her in terms of food, showering etc.

Just wondering if any of you guys have any suggestions about what you found useful following any kind of eye surgery (esp corneal transplant) or made recovery easier, and how best to support her.

Bit of a long post, but I want to make sure she’s as least stressed and best cared for as possible!
TIA guys!
Xxx

[Anne Klepacz]

Wow, what a lucky mum! The best remedy for anything is lots of tlc, and she's clearly going to get tons of that. It's been such a difficult time for people waiting for surgery, and of course your mum's a bit stressed now that moment has finally arrived. But it'll soon be done and then it's just time to relax and take it easy for a week or two. It's a few years since my last graft, but I do remember with my first one that I came out of hospital to find snow on the ground. And the whiteness of it was dazzling! People do tend to be light sensitive for the first few weeks, so a good pair of sunglasses might come in handy. And I remember leaving the curtains closed when I first got up in the mornings to let my eyes adjust to the light gradually. My eye felt a bit 'gungy' first thing for a week or two, so wiping around it gently with some gauze helped. And don't worry if the vision in the grafted eye fluctuates in the first few days. A graft isn't an instant cure like a cataract, so vision can take months to improve. But it's all worth it in the end!
Do come back and ask any more questions over the next weeks and months. And all good wishes to your mum for tomorrow.

[gsward]

Hi, best wishes for tomorrow. Most of us who have had transplants recently have generally found (dare I say?) a little better and quicker than we imagined. Let's hope your mum's is too. Apart from the practicalities the hospital will advise you and Anne has mentioned, here are my 'top-tips'.

• Get plenty of rest if possible, lying down. Scheduling a long audiobook, rediscovering the radio or BBC Sounds is a great way to do this.
• Make sure you use you drops exactly as prescribed. You can set alarms (lots of them on your mobile).
• Eat well - you know, the five-a-day stuff.
• If you have any concerns, check with your hospital, they should give you a number.
• Keep everything absolutely clean. Cotton pads and boiled water (cool) for cleaning. Use once only and wipe once away from the eye.
• Don't expect your vision to be good and settle for.
• Wear your eye-shield at night (10 days).

I think that's enough, but come back to us in the coming days/weeks if you have any more questions.

[Walmd365]

Hi there,

I do hope that it goes well for your mum today, I’ve my fingers crossed for you all. I had a corneal transplant mid October last year, like your mum after being delayed due to covid. I also had a transplant in my other eye nearly 15 years ago now. It sounds like she has a great support network in you and your dad, such a lovely lot of things to try to make it better for her today!

The two replies are full of good advice. I would add that for the initial first couple of weeks, it is really important that your mum does very little, nothing strenuous, no lifting and to move her head slowly (care when doing shoe laces up, that sort of thing). I used to do some exercise (rowing machine, golf) but all of that went on the back burner.

All the advice regarding cleaning your eye is correct and the hospital should tell you want to do as well. She should be careful not to rub the operated eye at all. In both my operations, I didn’t really experience any itchiness or pain, just a bit of discomfort in the first couple of days, hopefully she will be similar. I was worried that I might accidentally hit myself when asleep so yes the eye shield is important.

You will leave hospital with probably several types of drops to take a different number of times a day. In all probability, the number of types of drops and frequency will reduce quite quickly within the first weeks, but it is really important to take them exactly as the hospital say. I recall I worked out and wrote down the times to take them for each medication on the hospital sheet they gave me and left it out in the kitchen so I could make sure I was doing it all.

Right from the start I did try to get out for walks with my family, a cap and wrap around sunglasses to protect the eye were a good idea.
I would guess that the hospital will tell you to go back within the first week. Make sure they tell you exactly what to do if anything is unusual in terms of her eye, and what would constitute “unusual”.

As the hospital staff will have told you, the road to recovery of good eye sight and feeling back to normal, is quite long, I’m afraid. My vision was really blurry after the operation, and as Anne says it does vary quite a lot over time. I could (and can) see through the cornea, but probably things will be out of focus to start with so to speak. It was life transforming for my vision to have the operation, but in my case my vision improved when they fitted me with my contact lens and they can’t do this immediately. Patience is needed unfortunately but it is all worth it in the end.

Generally if you are unsure about anything, ask the hospital when you go back in a couple of days. Make a list of questions.

Please try not to worry though, the hospitals know what they are doing and do these operations regularly.

All the best, David