UK Keratoconus Self-Help and Support Association

Hi Folks,

Its been a while since I last posted so Happy New Year to you all. I hope you all had a good time over xmas.

I 've had a lot going on in recent months with ill family members, preparing to take my employer to a tribunal together with trying to move house.

As you know ny employer was extremely unhelpful, unsupportive and blatantly ignored my disability and needs. AFter being of sick from Jan last year, having intacs that didnt improve my vision I set about with help from Action For the Blind to return to work with the installation of visual aids. My employer never contacted me whilst I was off and was never concerned as to how I was progressing following my intacs op. I had information that lead me to believe they were trying to make me redundant and this is exactly what they tried to do when I initiated a return to work plan - they even ignored my calls and letters for a couple of months. I sought legal advice together with help and support from my local Action for the Blind and instigated a grievance that they had discriminated against me - which clearly they had. Initally I was prepared to take this all the way to court .After 9 months of wrangling, a legal bill of £1000 and also being told that a court date wouldn't be till Sept this year I decided enough was enough and settled my claim and took my redundancy. It was a very very long story, the games they played, the lies they told are too long to list but should anyone need to know any facts or are finding themselves in the same position then please shout via a PM. The toll of preparing documents and many appointments/phone calls with legal people wasn't easy and I just wanted it over and be able to move on with my life before my graft next week.

So that brings me to my graft!! I am really worried. I've read so many good and bad stories sometimes its hard to believe that I am going to be any better off. But all I can do is hope that it will be successful.
It was very disappointing that intacs didnt improve my vision as I was very much hoping that they would. I never thought 12years ago when I was diagnosed that I would be having a transplant. I am so concerned I will loose my vision. One day I feel positive and the next its negative.

I am really interested to learn from those who have had a graft in recent years what there activity levels were in the first few weeks. We are in the process of moving house. Moving out was originally planned for early last week, but unfortunately its dragged on and we are still here and are likely to be for a couple of weeks. The house is about 80% packed up but still there will be a lot to do when the time comes and I am not the type of person who can sit and do nothing when there is so much to do. Needless to say I am wondering how much I am going to be able to do.

Do I have to sit and do nothing for a month or so???

ali x

Yes, sit and do nothing for a month or so. Let somebody pick up your socks and peel your grapes. Let somebody else do the lifting at the time of your move, and the unpacking at the other end. DO NOT RISK your new graft.

I am sorry that your employer carried on being difficult, and that you had such an unsatisfactory resolution.

All the best with your graft. If you end up as well off as I am, then you will do very well indeed. Do not expect instant results; your new cornea will have to 'heal' into your eye.

All the best.

Andrew

Welcome back Alison, though I'm sorry you've had such a hard time over the past year. It's really sad that, despite all the discrimination legislation these days, there are still employers out there who take such an obstructive attitude.
All the very best for Monday - we'll all be thinking of you. As Andrew says, the main embargo in the weeks post graft is on lifting, which could put a strain on stitches. So please don't be tempted to help with the removal! I hope new cornea and new home will be the start of a great new year for you. Do let us know how it all goes.
Anne

Hi Alison

I had a PK op back in January and I ended up having 5 weeks off work. I would advise just to take it really easy for the first month as Andrew has already mentioned. I joined the 30 day trial of a well known DVD rental company which certainly killed a few hours!!!!

What graft are you having done? Is it under a general or local?

Good luck with it all

Lucy

Hi Lucy,

Nice to hear from you. Are you fully back at work and driving now?? Whats your acitivity levels now?and your VA ??

My op is under a general anesthetic and I will be in hospital till at least Tuesday evening. I had my pre op assessment a couple of weeks ago. I've read so many stories of patients not being able to exercise much for the first 8 weeks, it scares me a little. Although I don't visit the gym as much as I used to when I was younger, the past year I have started running and visit the gym about 3 times a week, so sitting still is going to be hard. I'm not the one that likes people looking after me - much the opposite!

bye for now

ali x

Hi Alison,

Sorry to hear about work troubles.

It's natural to be worried and to be having second thoughts, I went through the motions as well. It was people on this forum that have helped me a great deal, the first thing I was advised to do was meet up my consultant and ask all the questions I had directly to him. Doing this reassured me that I was doing the right thing and that I'd be in good hands.

My graft was done exactly a month ago and I am back doing things I previously was except the gym unfortunately! The first week post graft was the laziest I have ever been, couch potato would be an understatement It's been a major issue for me not doing any cardio or weights but I keep asking myself 'what's more important, the gym or my vision', It feels as if I could do some light stuff but I don't want to risk it. I take my dog for daily walks, that will have to do for a couple more weeks.

As mentioned by others, for your own good, get someone else to help with the move, don't risk lifting things, try to rest as much as you can especially the first week (easier said then done).

I wish you all the best with your graft.

SO sorry to hear about the problems with the employer. I hoep the settlement wassatisfactory inthe end.
Best wishes witht he op! - I'm sure you will have a far better time than I did!!
As regards activity - the main ban is on lifting, or bending, or anything that will possibly push up the pressure inthe eye.
It sin't too hard to feel it, actually - anything that you have to strain for - lifting, pulling, pusshing, stretching - and you start to feel a "pull" in the eye and that tells you"I shouldn't be doing this" and you ahve to stop.
As regards a move - if you're having a general, leave time to recover from it, quite apart from the eye. I was told before mine to leave two weeks, which fits with my experience of looking after my mother after an op. Be aware that after a general you may feel woozy, sleepy drift off to sleep a lot, and also be very forgetful, clumsy, dizzy, or just not feel your brain is firing on all cylinders ("Sudokus plastered with Tipp-Ex").
These could be as much of a problem as not being allowe to lift packing cases, so do be careful.
In terms of being active - 3 days after my op, I was off (on my own) on tube and train across to the far side of London to Sandown races (for which I had a season ticket). WOuld probably have insisted on going anyway if op had gone well, but had to do something to keep the hallucinations at bay! And fresh air and sunshine probably a good thing. Survived with nothing owrse than a twisted ankle and lots of travel sickness.
Tried going back to work - well, a bit of temping for a friend - 13 days post-op and ended up in A&E after feeling faint and dizzy - I think some of the anaesthetic chemicals got pumped out of some dormant tissues when I started using work muscles again.
As regards regaining full strength - I still haven't! - but that, 13 months on, is because of the adverse drug reaction (technical term is "Iatrogenic Cushing's syndrome" I gather). Unless you've also developed a steroid hypersensitivy anything like as rare and severe as mine, no reason it should take you the same way.
I was probably lifting and carrying things - like hay and woodshavings - at the stable yard as soon as my jelly-like muscles let me, and my eye told me if I was overdoing it occasionally - though not as often as the CUshings0affected muscles.
BOttom line, I think, was that the op had gone so wrong the eye was the least of my priorities and caring for it far lower onthe list than the rest of my health or recovery.
I'm sure you won't have the sae problems.
If you do find yourself organising a move, though - Do make checklists of everything, not rely on memory, do keep double-checking you haven't put something down and forgotten to pick it up again, and do get someone else to handle the caluables and glassware - I knocked over jsut so much in the first week! - and left my favourite hat on the tube, never to be seen again.
Rosemary

I don't know if this is the best place to ask but the thing is I was wondering if anyone could help me decide.

I have KC in both eyes and I have dry eye. I was knocked back when I asked about CXL (thank goodness) and next month I have an appointment with the eye doc. I was wondering if I should ask her to put a graft back on the agenda? Rosemary had a bad experience but lots if other people seem to have done well.

Should I keep going with lenses?

AJ

AJ

It is clear from your post that you have meetings with an ophthalmologist as well as an optometrist, so you start in a pretty good position: you are in the system!

Why not ask your ophthalmologist to talk to you about the relative benefits and dangers of having a transplant now? Ask about the risks of surgery, ask whether a graft would be PK or DALK, ask about the differences and the advantages of each.

Ask about the risks of waiting. You have said elsewhere that you have dry eye, ask if this presents any additional challenges for a graft.

Write down the answers you are given, and say that you would like time to consider what you have been told.

All the best

Andrew