possible graft

[ChrisK]

Hi Mike, I look forward to following your progress whichever path you decide to take.

I would also class myself as a wimp Needles and blood don’t overly bother me but anything to do with the eye and I cringe. Hence I was actually more concerned about having my cornea transplant than my heart ablation. I must admit I dread having my stitches out but then again just over a week ago I dreaded having eye drops. Now I’m used to them I don’t find them an issue anymore. Naturally I still occasionally suffer from an uncontrolled urge to close my eye and deflect the droplets away.

I also believed I could cope with my KC and for a long time I did. In fact I had KC in my right eye for over a decade before I realised it. I just thought I had a weak eye but as my left eye was so strong I went through life relying on it. It was only when pain, light intolerance and increased headaches occurred that I went to the opticians for a pair of glasses and came out with a diagnosis for KC. I was so naïve of KC at the time I actually left the place rather pleased that I didn’t need glasses. In fact I rather foolishly thought I’d take a trip to a hospital, have a minor adjustment and then have 20/20 vision. Needless to say I’ve learned a fair bit since then.

I’d suggest the question you probably need to ask yourself is what effect on your life does coping with KC currently have on you? For example I didn’t realise all the sacrifices I had made until I listed them.

If the effects are minimal then perhaps for the time being it’s possible and maybe easier to avoid the graft for now. At one time I had hoped to hang on until laser grafts were the norm as the healing process is so much quicker. But these are probably still years away sadly.

On the other hand whilst you have such a good and strong eye it’s probably a good time to have a graft. This because you’ll still be able to manage to a similar degree you do now just a couple of weeks after a graft. Or as I saw it, I wasn’t able to use my bad eye so having a graft I lost nothing. (bar the initial recovery period after the operation)

As you mention there is also the issue of independence straight after a graft. You’d definitely need help with walking the dogs as you wouldn’t want them pulling and you’d need to avoid bending down for a little while. Saying that I’m already doing about 85% of things I did pre graft and I haven’t needed nearly as much support as I thought I would.

Starting a blog would be great, I really enjoy reading the progress of others and it certainly helped me prepare myself better for my graft.

All the best for Thursday, I look forward to reading how you’ve got on. If possible just try not to pressure yourself and always remember that the decision is yours and you can take as long as you need to make it.

Chris.

[GarethB]

No need to worry about needles, i was so busy talking to the doctor I never noticed the needle go in the back of my hand.

Having stitches removed was the same, you are looking at the microscope an do not see the stitch being removed. There is no blood either.

If you can manage contact lenses, you can manage eye drops.

Whimp or not there is nothing to wory about.

Your concerns are no different to anyone elses when going for an operation.

[Alison Fisher]

I worried myself silly about things before my first graft - the psychological aspects of it being a transplant more than the actual op itself. I felt really badly that for me to see again someone would have to die. I just kept reminding myself that they would be dying anyway and that it was their wish for other people to benefit from their death. The 'opt in' system helped me deal with a lot of my feelings. Years after my grafts it still doesn't sit comfortably with me but I wouldn't be without my grafts for anything.

I am one of the rare people who had a lot of post graft pain but even on the worst days I never, ever regretted having them. The freedom from having to deal with painful lenses day in day out has never got old. Doing nothing more than popping a pair of glasses on to get good sight has never got old.

Yes it's scary but when you reach the point where you have so little to lose and everything to gain, well, why not grit your teeth and go for it? Or you could turn it around and look at it the other way - how would you feel if the possibility of a graft was taken away from you?

All the best for Thursday, and in making the right choice for you.

[Andrew MacLean]

Try to remember in all this that nobody is going to die in order to give you sight.

The death is entirely separate. Yes, somebody will die: possibly in tragic circumstances.

Following their death, their relatives will be faced with a question: can the salvagable parts of the body be used to give life or sight to complete strangers? It is a glorious testament to the generosity of the human spirit that folk in these extreme circumstances often say "yes", and so comes the possibility of sight for people like some of us.

Andrew

[GarethB]

I know I follow dangerous sports, but I live life to the full. I feel I owe it to the people and their relatives left to get out of life and give something back that I should enjoy life and my vision to the max.

[mike scott]

hi every one
ok so i have now had my appointments and the news
my right eye as known is very strong as yet remaining sable though taking the full strain.
my left however is kaputt
i was treated very well by the staff and a very nice lady called debbie did a topography that revealed the full extent of my KC.
the nice picture showed nothing but a complete mass of red with a spot of white in the middle. she told told me that the cone is one of the biggest she'd ever encountered and was complete accross the whole cornea hence all the red. the white in the centre signifies the thinness of the cornea.
her prelim diagnosis was that it was inevitable that the transplant would be offered on the basis that there was no useful sight to be obtained , that the thinness of the cornea means that on the outside i'm at high risk of perforation or rupturing and on the inside hydrops is just waiting to happen . so basically if either of those two occurr which apparently is highly likely then a transplant would have to take place almost immediately wether i want it or not
she then proceeded to discuss all the pro's and cons and the reassuring spiel so to speak before introducing me to my consultant/surgeon.
my surgeon spent over an hour with me and told me i have only the second worst cone that the hospital has ever had on their books.
not sure if all this information was supposed to make me feel any better or not ,
so i am now on the transplant list, which is apparently up to 2 years long, but will in his words hopefully be much shorter for me, should i suffer a rupture or a hydrops then it could be very much as soon as that occurs anyway as an emergency transplant.
so i'm pretty shocked at the moment with the realisation that i've been treading such a fine line and still am at present.
however being told that i'm now a transplant candidate isnt really a surprise, as the other stuff is

as promised i intend to keep in close contact with everyone and will keep a diary for you all if you want.

i've just had this thought that i now feel like that runaway bus in the film speed where it leaves everyone to jump the motorway bridge. not knowing what the hell is on the other side but they got to get there anyway

catch you all later

[ChrisK]

Sorry to hear that Mike,

I know it sounds terrible news but you may find in the long run it's the best possible news you could have had.

My eye was kaputt too, but already I see much better than I have done in well over a year.

Start that Diary!!!! The road may seem long and uphill but it's surprising how much of the time we freewheel.

[Sarah M]

Mike,

I was told there was at least a 6 month waiting list - 2 months later the op was over and done with.

Its been said before, once you've had it, you really will worry about what all the fuss was about.

In my case, I wasnt worried about the op itself, it was the aftermath - if there would be pain, the drops etc, but in all honesty a few weeks after its done, and youve got into a routine you sometimes forget. I dont mean this in a bad way, but the people around you at work etc, although they probably care (maybe), its not a big deal to them, and i think that helped me - they give no sympathy (which i love) so you have no choice to get on with it.

Rambling there, but back to the point in hand. You have absolutely nothing to loose at this stage, and chances are you will gain something. I havent been able to see out my right eye for yeeeears, had graft in Nov, and can now read 3 lines (with them oh so attractive optican glasses things). So im very happy. If it turns out thats all I can see - well its 3 lines more than I could before.

Hope that helped u a little. More over this board is a wee lifesaver, and in your times of need, there is always someone here to offer u some friendly words.
Sarah

[John Smith]

Hi Mike,

It sounds a bit like you may have keratoglobus rather than KC - but the conditions are very similar. There are slides of keratoglobus in John Dart's presentation on the DVD.

I understand that if you have a hydrops then they usually wait for it to dispurse before performing a graft, but it may be different if the cone is so huge.

Best of luck though whatever the outcome.

[mike scott]

hi john
thanks for your comment
unfortunately it is definately KC. it has been for 22 years now, i wish whole heartedly that it wasnt, but it is.
what the surgeon has said (mr brahma) is that over the last 2 years it has become very unstable and is very active at present , which is a bit of a worry
mike