advice please... umm again

[Sweet]

Yes that is very understandable, although most people post here because they are in a bad place and they need some help. Sadly we don't hear many stories from people who are dealing well with KC!

There are a few good stories though on how good grafts have been, am hoping that you can find these!

Take care hun ... Sweet X x X

[GarethB]

Now I understand, my grafts have been fine and still are 20 years on and where my KC is at I still consider everythinga success. This is ebacasue with all the eminent people I have spoken too there are only a handful of cases like mine they have seen and these guys have between 150 - 200 years experience between them.

Facts are most people who have grafts have extremely good vision usually with glasses or contact lenses. A few, which included me a couple years post graft and for a further 5 or so years never needed correction to see extremely well.

My feeling is that this forum still has a way to go before those posting represent the general KC community; that is those who cope fine never needing surgery and those who have surgery that have no complications.

I think that is why it is so heasy to find horror storiess, but most find this site when they feel they are in a bad way. Fortunatly that is changing, newly diagnosed people who just want to learn more about the condition and those who have had it a while and just want to share their experiences are coming on board so I feel it will not be long before this forum properly reflects KC and where most people are at if that makes sense.

[Alison Fisher]

I hope my post didn't add too much to your worries Sarah.

Look at it this way, if all hospital staff confidently say that corneal grafts don't hurt then there can't be many people like Nicola and myself. But, for the very, very few of us that do have pain knowing that it can happen will help us when we talk to our doctors about it. I wish I'd known because I was made to feel like a right wuss.

My grafts are the most amazing and fantastic things ever. If I didn't think they were worth it would I have had the second after the first? My life and sight are not quite the same as those of someone who's never had any sight problems but with no messing about with uncomfortable lenses and endless trips to the hospital and optician my KC has a minimal impact on my life. Go for it Sarah and I'll be keeping my fingers tightly crossed that your graft turns out as well as both of mine have.

[Sarah M]

thanx guys x

And nicola, hope everything gets a bit better soon x

[Sweet]

Sarah,

Just wanted to add that i was terrible before getting my graft done. I kept it very quiet from this forum until i went but did panic so much. Even though i am a nurse i was the worst patient ever as i was so dam paranoid that i would wake up!!!!

Needless to say that NO i didn't and i don't even remember counting down! Actually i think that people here (mainly Gareth) came along and knocked me on the head and i didn't really have drugs!! HEHEHE!!

I came around and felt really good with no pain at all. I jumped out of bed which annoyed the nurses to try out the walk in shower!! LOL!!! I only got pain first thing the next morning and paracetamol and brufen did the trick for the next few days. So it really wasn't anywhere near as bad as i thought it was going to be!!

Hoping this helps!!

Sweet X x X

[cherishu2]

Aw im sorry you feel so rottern.
I have my graft 6 weeks after my baby comes so i think ill compare it to labour. Maybe then it wont seem so bad to me

Hope ya feel better soon though

[Prue B]

Is it normal to have your grafts under general in the UK. Here the norm is under a local. They played Neil Diamond for my first surgery and Johnny Denver for my second and the anaethitist from the next room came in and told my surgeon his patient jumped upon him during her surgery. (apparently that was a first for him). My sister had generals because she is a bit whimpy about anything medical, but I am scared stiff of generals and would have a local before hand for anything they offered it. The procedure was explained. My second anaethitist could not do a local and thried to talk me into a general, but I stood my guns and my surgeon anaethitised my eye and she gave me the relaxants and put in a cannula. She gave me a local to put in a cannula which hurt more than the cannula going in would have. Like Gareth I got many years post graft with great uncorrected vision. I know wear glasses. What I was tryng to say is stand up for yourself and let them know. It is your body and you are in control and know what is bothering you.

regards Prue.

[GarethB]

Prue,

In the UK a general is most common for grafts in the UK.

If I had a local, I would need somthing abit heavier then Neil Diamond.

When I used to do hospital radio we were never allowed to play first cut is the deepest or stairway to heaven even if a patient requested it.

The funniest request we did was Cardiacarrest by Madness from the corenary care ward of course and one guy who was suffering after a haemeroid operation requested burn burn my ring of fire

I enjoyed collecting requests from patients who had a real good sense of humour

[Andrew MacLean]

Sarah

I understand. I think it was this sort of worry that led me to decide to delay surgery as long as I had sight with lenses. But, in retrospect, I think I worried unnecessarily.

Yes it takes time to recover from surgery.

Yes there are set backs along the way.

But when sight returns the sheer beauty of everything is so wonderful that everything was worth while. Now, with a second graft, I look forwad to having good binocular vision for the first time in so many years!

Nervousness is inevitable when you are contemplating surgery. If, after the operation, things do not go exactly according tot he text book, then you will have help near at hand. You will continue to see your ophthalmologist at intervals following your surgery, and you will always know how you can get in touch with the hospital if there is an emergency.

All the best

Andrew

[cherishu2]

hey maybe we will get a request "i can see clearly now"