My partner's op is in 4 weeks -I need help to help him thru

[Anna_V]

Hi Everyone,
This is my first time on this forum, after having heard of it through my partner, who is a KC sufferer + hydrops, and he is having a full cornal graft mid Oct 08 on his left eye, so in 4 weeks. He finds this site really helpful, and it has got him through some emotionally tough times, when Im unable to understand what he is going through, even though I try my best.

Having said that, I would like to ask anyone out there who has had a KC related operation -or the partners/family members who stood by them, if you could please give me any helpful tips on how I can help my partner post operation - both emotionally and physically. I like to be well prepared and organised and my partner teases me, saying Im more worried about the op than he is and compares my preparations to those of someone expecting a child!

- Should we buy loads of audio books for him to listen to in the week just after the op?(I dont think he will be able to/want to watch TV or films, as it is too straining on the good eye) ?

- he has been told he is not allowed to highten the blood pressure in his eye, for fear the stichtes will burst. Now, to what extent is he not allowed to do certain things in order to avoid high blood pressure? Is he allowed to bend down to pick something up off the floor? Is it that delicate? Is he allowed to lift anything, not anything heavy, but what about a plate of food? a piece of luggage? a basket of laundy (you can see where this is going
Also, if he gets angry with me for some reason, will this highten his blood pressure? (Do I have to just agree with everything he says for 3 weeks?! )

I ask these seemingly silly questions because my partner is a very active person, both in mind and body, and I know he is going to be bored and frustrated during the healing period, and Im going to be the one telling him that CANT go for a run just yet, or he SHOULDNT sit in front of the computer on facebook all day, until he has healed more, etc.

Thank you for reading this long post, and I hope some of you will help my partner and I through the trying times ahead.
Thanks for your support,
~ Anna

[cclman]

I wish him luck and the best and hope he has a good eye sugon or eye doctor. You will also need good advice and information about the operation and what will happen after (this is not always the case) I am sure many people have had that done on the site and I'm sure they will respond.

I had CCL or CXL done 11 days and have been totally dependant on my partner for all driving and unable to watch TV or read. I have been going stir crazy (see my threads) so filling the daily time is the hardest part as well as pain but he will be given pain killers and drops. I have no helpful advice- just to say he will need love, support and patience all of which you will give him as best you can.

Like every good wife agree with everything he says (....oh what a fantacy for me anyawy and my wife!! I WISH !! ) If he is active like you say he is, it will be hard, maybe you can get some good novels on CD so he can listen to them. His good eye will take all the strain while his bad one heals so only use a PC for say 15 mins a day.

I have used Youtube and listen to stand up comedy. I can recommend Bill Baily he can listen to that or Alan Carr and others. You sound a loving lady to him, so if you have time you could record lots of comedy clips from Youtube and he can listen them in one go on PC or CD, also buy some comedy stand up comedy CDs as he wont be able to watch comedy on TV as his eye will get tired. Just some ideas. Laughter is the best cure for that kind of thing and to pass the time IMO.


Good luck.

[Andrew MacLean]

Anna_V

Welcome to the forum! And all the best as you support your partner through the coming weeks.

Do not expect everything to be perfect the moment he comes back from hospital. His new cornea will be held in place by a number of sutures, and these may be holding the cornea in a difficult position so that his vision may not improve for some time.

Consultants vary in their practice. My own used 16 sutures, and with my first graft he removed them in two traunches of 8 each. With my second graft he removed all 16 at one time.

Audio books are a good idea. I rather like Rebus books by Ian Rankine.

Better not to bend over for the first weeks, food is okay, but a basket of laundry is probably a bit heavy. By all means agree with him if you want to, but telling him that he is being unreasonable might also be more honest!

You will find that you get through all this and look back on it with a wry smile. One thing with which he will have to deal is the knowledge that he is looking at the world, even looking at you, through a cornea that somebody else has donated. If he wants to talk about how that feels, by all means listen, but also feel free to tell him that you can't share that experience. For my own part, I keep on being amazed at how beautiful everything is, and (almost) everybody!

Every good wish.

Andrew

[rosemary johnson]

Hi Anna, and welcome - and to Anna's partner.
As regards lifting - I'd say that there shouldn't be any excuse for him not to pick his socks up off the bedroom floor, not to lift a beer mug (if his doc allows beer, of course!!) but trying to lift a bale of hay or a bucket of water is a no-no for several weeks! More practicully - I was quite happy to lift a kettle and teapot but asked the friend who gave me a lift home from hospital to put out the rubbish and the recycling crate.
My experience was that my eye told me when I was trying to strain too much as AIA could feel the tension going up and stopped quickly.
As regards other things...... much will depend on whether he's having the op under a general or local anaesthetic, and if the latter whether the surgeon insists/he agrees on being sedated.
If he'shaving a general, then he'll likely feel more tired and woozy for a week/couple of weeks from the anaesthetic which may well bbe more of an effect onhis life than the actual op.
If he's having a local, then once that's worn off - and any sedative - he's more likely to feel "as normal" bar the eye.
I sincerely hope that his experience will be totally unlike mine - I had a really bad reaction to the general anaesthetic, from which I'm still not recovered and probably never will be (I'll spare you the details here).
As regards help and support - one thing I could have really used and didn't have was someone more compos mentis than me to keep track of the drops schedule and remind me which drop and which tablet was due when, which I'd done and which I still had to do, etc.
(I didn't have this as had to send intended helper home for her own safety- long story.)
Audio books, and/or a radio, are a good idea - the other eye can have a rest from its contact lens (if applicable).
as regards being active - 3 days after my op, I was off on the train to Sandown races. Probably a rash idea and I have very little idea of the form fromt he afternoon's races. (In may case, I was desperately trying to distract myself from the hallucinations...... and was so dizzy I fell over onthe path going back to the station and added a sprained ankle to my list of woes!)
n terms of pain - I gather this can vary. I spent 3 days roughly after the op with an awful splitting headache, which at the time I thought was due to dehydration from being "nil by mouth" before the anaesthetic, but was more likely to be part of the damage caused by the anaesthetic. SO I was dosed to the eyeballs on neurofen for the headache and later the ankle, but the eye itself in comparison gave no pain to bother about.
BTW, it isn't blood pressure; it's the pressure inside the eye itself from the fluids in the eyeball - known in the trade as "IOP" for "Intra-ocular pressure". It ill be measured at each of his appointments and if it rises, they'll probably give him yet more eye drops to bring it down again. The anti-rejection drops can actually cause the IOP to rise, so it is something they keep watching.
all the best.
Rosemary

[pauline collins]

Hi Anna, i have KC but as yet dont require a graft. Should the day arrive I will be leaving lists of things to do for my other half!!.....the type of things we get and do and dont really think about.
Please use the forum to let us all know how you get on and especially if you need to let your frustrations out!! a problem shared is a problem halved!
Take care
Po

[GarethB]

Anna

If hubby follows basic common sense then things will be fine. no one should really be bending down and straining their back, simple manual handling where the knees are bent and avoiding rushing bending will be fine.

Todays current litigation culture means consultants are far mre warey in what they advise now. When I had my first garft 20 yeasr ag, six weeks post graft I was back working on a farm during the harvest shifting hunderds of bails of straw and hay. Dont think it is allwed anymore.

The most important thing is to be there for support. We all react differently I was able to watch TV if I sat close enough the following day. Had to wear sunglasses but that was no big deal.

You might have to help in adapt to being with just one eye as it can take sometime to get useable vision. We are all different so the outcomes varey so learning to adapt is important to maintain independence.

Through this site I have learnt so much through this site that i can do just as much being classed partially sighted as I can fully sighted.

Really take it day by day and both of you use your common sense, it really does count for loads.

If you find yourself in a difficult situation, just break it down to many small steps and work on overcoming those. It's then surprising how quick you then overcome something you initially thought impossible.

Good luck.

[Anna_V]

Hi all and thank you for your replies - keep them coming
I have shown them to my partner and can now say I have backing that he should not use the computer excessively or lift heavy objects! So thank you.
I will see if we can make the meeting tomorrow at Moorfields, would be good to speak to those of you who are joining.
I will continue my preparations and keep checking this space for any new tips from you, and will also post any of my own tips once we are post-op, for those of you who have asked.

For those of you who have had an operation - did you find it too daunting or overwhelming to take a walk a day or two after your op, without or without someone else, fx down a busy high street? or through busy junctions?
Im thinking that a daily leg-stretch would be nice for my partner, but to get to the river promenade we have to walk through several busy junctions. Im worried of busy Londoners pushing their way past, knocking into us etc, which will not be helpful!

Thanks again, and hope you are enjoying the wonderful sunshine this Friday afternoon.
~Anna

[cclman]

Anna if I may say, if it were me I would not walk anywhere on a London street unless its some very quite leafy suberb or park as Londoners will knock him over either because yjey don't look or are in a hurry!!! very unsafe. Also, he may not be allowed to have any light in his eye for a while??? see what other grafters on the forum say or what the doc suggests. Good luck!

[rosemary johnson]

It didn't stop me going out - to GP's 2 days after op, to the races 3 days after.
But I did have a contact lens to put inthe other eye to see where I was going.
Also, it was by then February - not (Indian) summer sunshine.
People vary how light sensitive they are. Shades and a broad-brimmed hat recommened. What he'd feel about going out with the eye patch on is another question.
It would protect against wind and dust - and light, if it has a pad inside it - but may attract too much by way of unwanted attention!
I would think that fresh air and gentle exercise after a few days not a bad idea - again, will depend on what sort of anaesthetic hes having. some of them can make one feel rather dizzy for varying lengths of time.
Rosemary

[cclman]

IMO- Keep him in doors for at least 3 to 4 weeks post graft (maybe longer If they say 3 weeks add 2 of your own). The air can have nasty germs and dust in it. Also get the hoover out and clean the entire flat or house before he comes back after the graft inc under rugs, beds and chairs, you can buy anti dust spays now. As they say prevention is better than cure and other old sayings.... but also you cant take any risks.