Looking for advice

[Mrskluther]

Hi all, new to the forum.
I was first diagnosed with KC when I was 17...i was sent to a specialist where I was then treated with a contact lens. I was able to use this until I fell pregnant and stopped going to the eye infirmary. Back in 2014 I done something to my affected eye and it scarred. Whilst there I found out KC was developing in my right eye and had cross linking which so far *touch wood* has been effective. (Sorry for going on I'm getting to the point of this)
Today my optician noticed that due to the KC and my left eye being bad with it my eye was drifting to one side (something that I'd already had pointed out to me by my MIL and husband) she told me to mention this to my consultant when I seen him. I have what I can only describe as the most insensitive, patronising and condescending consultant ever. He is very harsh when he speaks so I was a bit worried about mentioning it to him. But I did as I wanted to know what could be done. He mentioned I could have surgery to fix the drifting but as my vision is so poor it would continue to drift again. He's decided I should give the contacts another go but if that fails to help my drifting eye or my vision isn't helped the only option would be for a cornea transplant. He was very negative and basically scared me by telling a load of negatives to the surgery and no positives. I broke down to my husband as I have no idea what to do if it came to that. Has anyone had a transplant and got any positive stories please x

[Anne Klepacz]

Hi and welcome to the forum,
There are lots of us here who have had corneal transplants with good results (and a few for whom a transplant hasn't worked so well, but there are never any 100% guarantees with any surgery). But it's also true to say that a transplant is usually only done if contact lenses can't correct the vision. So it's definitely worth trying contact lenses to see if they would work for you. I'm presuming that the consultant was suggesting lenses for both eyes or for the left eye so that you would be using that eye again and that might stop the 'drifting'.
And if you'd like more information about KC, including our information booklet about the condition which gives details of all the options available, do e-mail your address to me at anne@keratoconus-group.org.uk and I'll send you a copy.

[mattcox]

I would seriously consider finding another consultant. You need trust the advice that your consultant is giving you and be able to discuss the pros and cons of having a graft.

[Muddy]

Hello
I don't think you have a very sympathetic consultant I am so sorry you have been treated this way don't give up.
Here is my story it began when I was 6 years old in 2 weeks I will be 69 so it is not brief.
One day when 6 years old I rubbed my right eye the vision i n my left was far from normal. I had cortisone and atropine drops for a number of years was in hospital a coulple of times but had no real treatment just observation I think. When 12 years old my consultant decided on a corneal graft I was very excited and looked forward to seeing properly with mt left eye. The graft did not happen after the the pre surgery preparation the consultanat looked at my eye and thought wrongly there had been some improvement no graft! I was devastated. For the next 13 years I visited the Leeds General Infirmary with ever longer gaps between appointments seeing a different junior member of the team every time. Having been married for a few years and wanting to start a family I decided to ask searching questions at my next appointment.
The doctor I saw told me the eye was blind and I need not attend any more if I thought the appointments wasted my time! I was speechless here we were in the 20th century I had been attending hospital for 20 years and he was telling me to walk away with no change in my condition NOT ACCEPTABLE!!! I asked if a graft would help yes he said it was the only thing "So can I have one?" I said. Yes I had one about a year later. However my left eye had become a lazy eye the brain had turned off the switch so to speak after 20 years of trying to see through fog. My vision was slightly better I could see my feet again not clearly but enough to fend for myself in a house if relying only on that eye but no way could I use just that eye to cross a road. That was February 1974. I was in hospitalfor 3 weeks much shorter now I understand I met Carole she had had a graft a few days before we became good friends and still see eachother. The sister on the ward was unbeliveable saying we woud not be able to go in a room where wallpaper was being removed bugs from behind the paper would attack our grafts neither could we be near a boiling kettle the steam would be no good for our grafts we would never be able to wear eye make up nor lift anything heavy. Carole had 2 little girls one was too young to walk and this sister had her thnking social services would have to intervene. We had the most amazing young Ausrarlian doctor who did the grfats his answer to all this was ignore it!
So what have I done with my post graft life? LIVED IT! To be honest once the post operative phase was over with I forgot I had a graft. I have had 2 children in that time in fact I had the stitches out under full anasthetic during my first pregnancy. I worked for 17 years using computers every day. I holiday abroard and have done so a matter of weeks ago in strong sunlight but always wear sunglasses, most of the time I forget about the graft. However I have had 2 possible rejection episodes after 22 years and 35 years but the graft survived them. I have always driven I have done aerobic classes these days zumba gold. At the moment I am experiencing the third rejection episode and hope it will survive that too but I have now had it almost 43 years. I have read a few messages on this site ( which I only joined tonight) which suggest there is no reason not to expect a graft to last the recipiant's lifetime. There are so many factors for instance how old was the donor, I have no idea how old my donor was I was told nothing about him/her all I can say is I am eternally gratefull to that person and their family and wish I could have told them so. I do no know whether Herpes Simplex was the cause of my keratitis or whether it was measels had the donor ever suffered from herpes simplex? Also I have been told fresh tissue is preferable to frozen there were no frozen corneas in 1974. When I ask doctors and I have had the opporunity to ask quite a few over the years how long a graft will last the answer is always the same .....a sharpe intake of breath! No one really knows because there are so many variables. Today I was told my graft had done very well so I am beginning to think that perhaps a second graft my be not so far off . I have been very fortunate to have an amazing right eye and hope it c ontinues to be amazing.
The current rejection episode seems a little more complex than previous ones as I have an ulcer on the eye as well as rejection symntoms the steroid drops to stem the rejection aggravate the ulcer. Today was the thied day I went to the the hospital and I was told things have improved a little I am back there tomorrow and maybe well into next week but I will do whatever I can to keep this graft.
I hope this has been helpful to you and wish you the best of luck with you sight.

Muddy X

[Anne Klepacz]

Welcome to the forum, Muddy and thank you for your inspiring post! You're not the only member to have a 40+ year old graft - as you say, no one can predict how long an individual graft will last but the new partial grafts that are usually done these days may well be longer lasting. My first graft failed after 28 years but I had a successful regraft 2 years ago. Crossing my fingers for you that you do manage to keep your graft. If it does end up needing to be redone, you'll probably be out of hospital the same day - things have changed a bit since the 70s!
All the best
Anne

[Muddy]

Thank you Anne for your very informative reply yes I guess a regraft would be a very different experience for me ........such progress to be out the same day. I find that quite amazing thought it might have been an over night stay at the very least. So far so good things are settling down but I imagine a regraft could be on the cards some day.
Muddy x