Planning for surgery

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jessiex21
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Norfolk

Planning for surgery

Postby jessiex21 » Fri 15 Jul 2011 11:27 am

Have struggled with poor vision and problems with lenses for some years, the time has come for the graft to my right eye which is booked for Moorfields in October.

Having expected wait much longer for an actual date this has set my head in whirl of trying to organise everything from travel, hotels, children petsetc and amsure i will miss something which becomes obvious when its too late


I know lots of you out there have already been through this processand so would be grateful for any advice / ideas on what to plan and organise before surgery and how to cope afterwardsetc

How long might I expect to be off work?
Will I cope at home alone for those first few days ( hubby will go back to work the following day)
I have 3 children so will I be able to manage to look after them or rely on the generosity of friends to help out etc

I appreciate it is different for everyone but any tips would be gratefully received :D

Many Thanks

longhoc
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Joined: Sun 26 Dec 2010 11:13 am
Keratoconus: Yes, I have KC
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Re: Planning for surgery

Postby longhoc » Fri 15 Jul 2011 12:17 pm

Hi there Jessie

First off, great that you're already thinking ahead and doing as much forward planning as you can. It will certainly help. Of course, don't worry about trying to do everything right. Just do the best you can and you'll be fine.

As I had my graft on Wednesday, will reply in the form of a brain dump so appologies if it's a bit random, thought it best to write everything as it comes to me while it is still fresh in my mind.

Okay, first off, things to try and do before the procedure:

1) Get a good supply of food in, store cupboard essentials (don't forget pet food!) all in good supply, freezer full, perishables like milk bought with a good sell by date on them. You won't feel like doing the chore of shopping when you get home, even if you've got others helping you they probably aren't as organised as you and will need a list which you'll have to write and basically, it's not going to be sorted the way you want it to be -- so try and get that done ahead of the day of admission. I wish I'd set up deliveries from the supermarkets who do internet ordering. I've got to do this now, and while I can do basic typing like this, navigating through those infernal online order sites isn't where my brain is at the moment. Lifting is to be avoided post-op so I'm not up to actually going to the store myself. Really should have thought this one through better ahead of time... never mind. At least you can benefit from my experience !

2) Get up to date with laundry. Everything washed, dried, ironed if needed and put away. You won't feel like it when you get discharged and misery is a full laundry basket at the best of times. You may well have low vision post op for a little while so it's a harder job to do that normal. I was pretty good, but I was running out of socks, it took me half an hour to sort out quite a small load and was a real strain on the eyes I could do without.

3) Clean. Get the house as tidy as you can, at least so it can be left a week. Was really nice to come home to a house in reasonably good order and know I don't need to worry about doing any serious work for several more days

4) Arrange GP appointment for two or three days after your discharge date. If yours is anyhting like mine, they get booked up and you'll want to stop by your GP just to let them know how things have gone and discuss getting repeat prescriptions set up etc. If you need a Fitness for Work certificate (i.e. a sick note!) you can get that in place. Glad I did this bit of logistical planning before hand. The minimum is two weeks off work I think for DALK. I think that is on the optimistic side. I don't think I'll be ready to go back to my usual hours for at least a month. If you can do a phased return to work, e.g. half your normal hours for a couple of weeks, I think this will be a lot easier. Everyone is different and so is their recovery time. Do only what works for you. Don't be tempted to rush back to work too early.

5) Stock up on tissues and (plain white) kitchen roll. They'll make life easier for the hygene and care routines you have to follow.

6) Clear a good space in a cupboard to store eye baths, saline, dressings, medication etc. Aim to have it all in one place, near your bathroom. Amazing how much room it all takes up and you don't want it getting in a muddle.

Next, during your hospital stay:

1) Take a mobile phone and charger. I did the former and not the latter. Most peeved when my battery ran out !

2) If you're not being driven door-to-door to the hospital, take cash for taxis. I slumed it on the underground and I really should have not been so stingy (I'm not normally -- usually I take taxis in London, certiainly if I'm not going that far, I can't think why I didn't this time... think I was just determine dto prove I could get back to "normal" quickly). You'll feel a little tired and your eye will be prone to soreness, so just having someone pick you up, take your overnight bag and worry about getting you to the right place is worth every penny.

3) Don't overpack. Just a simple change of clothes for when you get discharged. Don't bother with books, magazines etc. You'll not really be up to reading while in hospital.

4) Listen and take notes of the post eye operation care instructions. There's a lot to take in. I think I remebered everything, but I wasn't at my sharpest during the immediate post op recpvery period so I wish I'd made notes. If you've got a good memory you probably are better than I am at recalling details, but if not, worthing keeping in mind.

Finally, when you're back home:

1) DO NOT TRY TO LIFT ANYTHING REMOTELY HEAVY. I stopped by M&S Food at Waterloo station on my way home, only got a few things (see comments about provisions earlier !) and wanted fresh fruit and veg. Hardly anything at all in my shopping basket, but it adds up. Coupled with carrying my overnight bag, getting everything back home was a struggle. By the end, I could actually feel the effect on my grafted eye of trying to carry what was for me -- under "normal" conditions -- nothing much at all in terms of weight. Now I'm not picking up anything which registers as "not light". Will keep this zero-tolerance approach for at least the next week or so. Then will only do very un-strenuous loads e.g. four-pint bottles of milk kind-of weight. Even then, will be very very cautious.

2) Think of life like it is running in very slow motion. It's not that you can't do anything (apart from the weight lifitng issue above) but everything you do takes far, far longer than normal. Take everything in small, managble steps. I just did beans on toast for lunch. Broke the job down into small, simple, tasks. Opened the can of beans. Found pan. Empied beans into pan. Had a break. Found bread, put in toaster. Laid table. Another break. Warmed beans. Break. Did toast. Served. Break. Cleared away. Break. Set dishwasher. End to end, took over an hour. Frustrating, but don't be tempted to rush. If you rush, you'll get tired. If you get tired, that seems to set your eye off.

3) Allow plenty of time for eye drops, bathing, clearing away associated paraphenalia. The post op care routine is timeconsuming.

4) Here, I'll have to speculate a bit. It sounds like you've got a busy family to support. Now, I'm going to be a little contraversial. If you can, it might help to drop the childern off with relatives for the first two days you're out of hospital. I'm sure at this point I will get flamed by others who say that it's no problem and actually a good thing to get back to a normal life and routine. Feeling they way I do today though, I'm not sure I could sort out a family and my own wellbeing. I could do one, or the other. But not both. This is a major operation you're having and getting yourself well needs to be your first priority once discharged. I think by the third day, you'll be a bit more up to taking care of everyone else. But I'd have a serious think about the risks of neglating your own needs if you try and run the family at the same time. Disclaimer: we don't have children so my actual experience is zilch ! So I may very well be completely wrong here. If anyone has real, actual experience of this subject, do please pitch in and correct me if I'm not right.

Can probably think of a lot more, so if you've got anything specific you would like to know, do please say.

Good luck ! It's a big step having a graft. I know at least a little of what's going through your mind right now. As I mentioned at the top, really fantastic your planning ahead so well. Lesson to us all :)

Best wishes

Chris

jessiex21
Newbie
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Posts: 9
Joined: Sat 04 Sep 2010 5:10 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Norfolk

Re: Planning for surgery

Postby jessiex21 » Fri 15 Jul 2011 1:24 pm

Chris

Thank you so much for your response, you certainly covered lots of things i hadnt even considered (like making the GP appoint in advance)

Like i mentioned in initial post ,my head is in a complete spin at the moment, so the more things i can write down or arrange even so far in advance the sooner my head might stop spinning.

I am sure most people in this position feel just the same, so hopefully your reply will help others as well.

Sending you every good wish for a trouble free recovery

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Planning for surgery

Postby Anne Klepacz » Fri 15 Jul 2011 4:14 pm

Not much to add to Chris's comprehensive list (and my grafts were 25 years ago, when we had the luxury of staying in hospital for the first couple of days post op and being waited on hand and foot. Not much chance of that now!)
I do remember being told much later that a general anaesthetic takes up to 10 days to clear out of the body, so I put my general 'doziness' in the first week or so down to that.
You don't say how old your children are - are they old enough to enjoy the responsibility of looking after Mum for a change? I was a bit nervous of friends' very young children, who seemed to flail their arms around uncomfortably close to my grafted eye at times! So if your children are young, some help with the family would be very useful for the first week or so.
You're the important one in the family immediately after the op, so grab any help you can!
All the best for October.
Anne

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melissa
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Joined: Tue 18 Dec 2007 3:08 pm
Keratoconus: Yes, I have KC
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Location: South Africa

Re: Planning for surgery

Postby melissa » Tue 19 Jul 2011 8:31 am

HI jessie,
lots of good advice there. i also think you should try to temporarily pass over as many household responsibilities as possible. The anesthetic made me very drowsy and i was light sensitive so i really just wanted to be in a dark bedroom. the problem was boredom! i suggest setting up a radio/cd player in your room. and then audiobooks are essential (in my opinion) . i listened to a whole book and a few Black Adder skits... as well as the radio and ipod
Good luck


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