Scared and need advice :(

[Mabs]

hey guys

i havent really posted much here but i need some advice on what to do, or if i am doing the right thing here? Basically i will be getting a cornea transplant in my let eye on the 10th of march, but i am really scared on whether i should go for it or just cancel . my vision is very poor in my left eye.also have very bad. scaring, i use to wear a rgp lens in that eye but recently my eye started to swell up and it started to get some irritation from the lens. i just don't know what to do now

ive read so may post here about people having them done and still no improvement or such. to be honest ,me reading some of the post. which have been posted has put me off and frightened me. Its all negative. im sorry for the lame post but i need to talk to someone who knows what i am going through

thank you

Mabs

[Anne Klepacz]

Hi Mabs,
The trouble with any forum like this is that's there's always more posts from people who are having a hard time and need support. But there have been lots of people here who have had transplants which have worked well for them. It's just that they have stopped posting because they don't need the support any more! It also depends how you define the 'success' of a graft. Most people will still need to wear contact lenses after a graft to get the best vision. BUT lenses are usually easier to fit and more comfortable after a graft. I had grafts in both my eyes over 20 years ago. I can now get good vision with either contact lenses or glasses and I've never regretted the decision. And I hope some more people will reply to you who have had positive outcomes after a graft.
From your previous posts, I know part of your problem is that you've been offered very few lens options. If you're still really worried at the idea of having a graft at this point, could you ask your GP to refer you to another hospital for a second opinion? All the best whatever you decide.
Anne

[Amarpreet]

Hi

I think you should go for it. I'm presuming you live here in the UK hehe If you do, you should know that there is quite a long wait for corneal transplants, due to a shortage of donor corneas.This is your opportunity to get one!!

I also have a lot of scarring in my left eye and the e hospital tells me that this really affects my vision in my left eye (which is now beyond Cross-linking or anything else.. ), so I partly know what you are going through.

Don't forget that the recovery time is about 1 year, and like with any surgery, there will be pain and disappointments for the first few weeks/months, but it should improve over time! In the end, it will probably have been worthwhile! Positive thoughts!!!

Best of Luck with your decision

[Mabs]

thank you both for the feed back guys, i really appreciate the advice guys thank you . i think i will go ahead with it and get it done, better than sooner than later. im just really scared bout it, like i mentioned iv read so many people who had a bad time with it. But i will not leave the site i will still keep posting and telling people on how i am getting on. but if there are anymore advice. i will appreciate it a lot

thank you again

[space_cadet]

I don't have much in terms of advice to offer you other than speaking via this forum to many people via both this forum and a facebook group has majorly preserved my sanity over the last 10 months. Asking questions aout all aspects of KC has really helped my confidence and my ability to explain to others what KC means to me.

Feeling alone and isolated is possibly one of te worse affects of KC as unless you have it is so hard to comprehend and explore what it means, as lack of wide cirulated information is hard to figure out, ignorance is distressing and the knock on affect on mental ill health can leave isolation a prominate emotion to many.

if you want to chat feel able to PM me anytime

love hugs and positive vibes
Lea
xox

[Andrew MacLean]

I have never regretted having either of my grafts.

All the best

Andrew

[Mabs]

yet again thank you for all the help, i m gettin nervous about the operation as well im a very active guy and i like to be very independant lol just seeing that me having this will probably take it away from me, but thats just the negativity talking lol

i hope to get back to my weightlifting cant live without it, well im a body builder lol so i dont really wanna stop doing that, so i guess me rambling on so much will this stop me lifiting heavy weight sorry if this didn't make sense.

[Andrew MacLean]

Mabs

Take time to recover. The straightforward answer to the question about lifting heavy weights is that you will probably be advised to give that a bit of a miss for six to eight weeks after surgery. When you get back to the weights you will probably be advised to start with light training and then build up to the greater resistance.

Take advice from your ophthalmology team and you will find a safe way back to your peak fitness.

Andrew

[Mabs]

thank you andrew, yea i may just do light weight for the time being, but its going to be hard from going doing 45 to say 10 lol but thank you for the advice thou

[rosemary johnson]

Hi Mabs! - understand the feelings all to o well.
I'm one of those who had the truly horrible experience of a graft - I personally thoroughly and utterly regret going for it; the biggest mistake in my life was not putting my coat back on and walking out of that hospital.
But I am I gather inthe inority,a nd in my case the worst of the problem were adverse reactigons to the drugs, not the eye itself (but see below).
Good luck with whatever you decide.
One note of caution, apart from my experience, that strikes me is: the chances are you'll still need to wear a contact lens on top of the graft (I was told 50% end up with a contact lens, 40% inglasses, and only 10% without either - and that 10% without either includes people like me with grafts that can't be corrected at all for various reasons).
if you are only getting the chance to try a limited style of lens - or, do I gather, only one type? 0 then will you be in the same situatoin post-graft? - that is, they can only offer you the same one type, and if that doesn't work, you're stuck?
If you don't tolerate that type now, will a graft make it any different? - you may have a more regular shape that is easier to fit, but that is not the same as the eye tolerating the lens.
ANd in fact, a graft may make the eye less able to tolerate a lens - one of the known risks is that a grafted eye does not get the oxygen supply it should through the back of the graft tissue, and can get low oxygen and go cloudy when wearing a contact lens for any length of time.
[No-one told me this was a risk and in fact it has happened to me - they can fit a lens which gives 6/5 vision in the clinic but after an hour and a half the world has gone all cloudy and misty.]
If they might be able to offer you the chance ot be referred elsewhere to get a better range of lens options post-graft, why can't they do this now? - they may be an option out othere that gives you better vision without a graft.
Of course, you may be one of the many peopel who are very happy after a largely trouble-free graft experience and end up glad they did it. I hope so, for you.
Once you go for it, they will never unndo it (believe me, I've tried to get them to cut mine out!)
Rosemary