Been told by hospital I need a graft

[Karl R]

Hi all,

I was diagnosed with KC in both eyes by Southend Hospital in July after having had several prescription changes over a two year period, have had severe astigmatism for many years. At the time they said that I would need to have contacts fitted but due to a nimpending move ie next day they would not be able to do this.

After a 4 month wait I went to the eye clinic at my local hospital Ormskirk. The hospital confirmed the KC diagnosis so I was expecting to be told that I would have to go back for lens fitting etc. After discussing the options available and the apparent current thinking medically, mainly due to past experience of having tried contact lenses, I was told that I would be referred to St Pauls Eye hospital in Liverpool as I need grafts.

The prospect of having this major eye surgery daunts me somewhat and I would appreciate expereinces of other forum members who have had grafts. My main questions are:-

How long is the average wait?

How much time will I need to take off work bearing in mind that I have to drive 30 mile to get to work?

How succesful have other operations been?


Many thanks in advance.

[jayuk]

Hi Karl

What can you see currently with and without lenses?..have they told you how advanced your KC is?..have they given you other Contact Lens options?

To answer your questions

How long is the average wait?

For a graft on NHS ranges from 3 - 12 months depending on where you are in the UK

How much time will I need to take off work bearing in mind that I have to drive 30 mile to get to work?

I would suspect that they shall do ONE eye at a time, and thus if you can see from the other, there is no reason why you cannot drive after 6 weeks (maybe sooner) as long as you are legally allowed to drive. In terms of taking time off, I was working one week later from my op,

How succesful have other operations been?

Difficult to quantify, but the results of Grafts are generally good. However, what would be more valuable is to ask your Eye unit how many they have done, and the general outcome of the grafts. The current data available on Graft success rates are not worth the paper there printed on as there all misleading.

Hope that helps

[Frederica Bull]

How long is the average wait?

We made the final decision to have a graft in Jan and I had my op in early April. I was told that there would be not wait for the donor graft but rather I might have to wait until a slot was available in theatre.


How much time will I need to take off work bearing in mind that I have to drive 30 mile to get to work?

I too have a significant drive to work and no possible public transport. I don't know if you can drive at the moment, but I could not before my op, so I had to wait until I could drive until I returned to work. I had not driven at night for months, and did not drive for several weeks prior to the op. I started driving again 5 months later.

I expect you will be shocked by this. But I really would suggest take time off work if you can and rest. The op is not that painful or demanding but I found doing anything accurate with my eyes VERY tiring. I am very right eye dominant with a badly affected right eye so I guess this may be why I was so affected. Take time to allow your brain to adapt to the new vision - they say it takes up to 2 years to get the full effect of surgery. I had most gains by 5 months.

I was fortunate to work for an organisation that offers 6 months sick pay.


How succesful have other operations been?

Brilliant. I can wear glasses or contacts. I can drive, read at speed and work! I do have very short sight in my operated eye but I can cope well. Before the op I could not find the eye chart with my right eye and now I can see lines 3/4 with correction. I have not had any rejection episodes.

I do still have photophobia - and wear sunglasses alot. But hey! this is better than being partially sighted and not able to drive!

BEst wishes

Do email me if I can be of help

Freddy

[Susan Mason]

Freddy - sounds like your graft & graft experience went well, this is good and hope it continues for you. Must be great to be able to read and drive etc.

Karl

I haven't had a graft yet however, it is probably just down to time so can't help you much there.

I can however give some advice on St Pauls Eye hospital and getting to work when you can't drive.

St Pauls Eye Hospital - I was asked to go there for an RNIB Low Vision Assessment. It took all day as they tested all sorts, which I wouldn't expect they would do in your case, my report asked all sorts of questions about field of vision etc. I also saw a consultant for about 30 minutes at the end of the day, he was really good (sorry I can't remember his name). He spoke to me quite a bit about KC management and various contact lenses (at the time they were trying at my local hospital to fit me with RGP's without much sucess, too steep on one cornea for a lens to sit). He explained about scleral lenses (large contacts which sit on the whites of the eye - see main page for pictures of different lenses), which can in some cases help and buy you some time before a graft is needed (shortly after I was fitted with scleral lenses by my local hospital and for 12 months was 'almost' normal).
He also talked to me about grafts and how they worked and was quite thorough on this I felt. He made it quite clear that a graft would not 'cure' my KC only remove the tissue that had been damaged (cornea) and replace it with good tissue which then would hopefully mean I could see without the distortions created by KC, although I may still need glasses or contact lenses of some sort. He also explained that in some cases a graft patient may still need to wear a contact lens, even a scleral in some cases.
What he did make clear to me was that normally it is suggested that a graft is last option, once done it can't be undone and sadly in some cases may not work as well as we would all hope (other posts on here will show how various people with grafts all have different experiences, Gareth B, jayuk, John Smith to name a few).

What I would say is push for the appointment, explain you need to work etc and find things difficult with the uncorrected KC hopefully you won't have to wait too long and then at the appointment see what they say and ask lots of questions - go prepared, with a list and take someone with you if you can it can all be a bit much to take in.

Getting to work - Access to work may help here. If you can't drive and there is no public transport you can use and you have sight problems ATW will most likely pay towards taxi costs for you. Worth looking into.

Also you may find that Action for Blind People and the RNIB can all help and give advice.

If you want any more info or have any questions please let me know.

Best wishes

Susan

[Karl R]

@ jayuk

Currently I can just see well enough to drive although I am now starting to find it difficult at night. In daylight and lit environments I can see most things well close up but struggle to read anything at a distance, this tends to vary day by day with some days being better than others. This is coupled with a halo effect.

Approx 9 years ago it was recommended by an optician that I have RGP lenses in order to help with my astigmatism. I managed to wear these for three weeks befor going back to glasses. I found that during this time my eyes were both very painful, bloodshot and irratible. Because of this the consultant at my local hospital has said that lenses would not be a viable option.

@jayuk, Frederica Bull and Susan Smith

Many thanks for your replies, I now have a long list of questions prepared for when I get an appointment.

[jayuk]

Karl

From what you have said I would def recommend that you re-visit the contact lens route. If you have only tried these for 3 weeks in your entire KC Path than you may be surprised what you can gain from visiting them again.

There are alot of different lens types available now, and the materials etc used have changed.

Having not tried the lenses enough, I would not even consider the graft right now, if I was in your shoes.......exhaust the Lenses again!....

[Frederica Bull]

Karl

I agree with Susan and jayuk - definitely try the different lenses on offer - things have changed a lot in lens technology. It will take some time though - so be prepared for a trial and error series of visits as they get the fit right and the prescription.

I only went to a graft because I could only reach 3-5 hour a day wear for my lens in my bad eye - just not enough for a teacher!

Good luck with your investigations.

Freddy

[Karl R]

jayuk and frederica.

It was the consultant who suggested that I go straight for the graft as she reckoned that even if I could tolerate lenses I would get at most 6 months use. She also stated that the current tinking in our area is that grafts are best done in eyes that haven't had lenses fitted.

I am now very confused!

[jayuk]

Grafts are best done in eyes that havent had lenses fitted??!?!?!?!?!?

NOW Id like to see the reasoning on this!!!

I am HOPING the consultant is speaking from a "lens causing corneal scars" angle (which also hasnt been conclusively proced).

I can now see why you are soo confused!

However, for KC you will find that the majority of eyes that have had Transplants would have had years of Contact Lens wear.........

I am also surprised how the consultant thinkgs that you will only get 6 months lens wear?....When the condition itself is soo unpredicatable...

[GarethB]

Karl,

I understand your confusion.

At the KC confence in June this year over lunch many voiced the opinion that the lens specialists would do all they could to keep us from the operating table while the surgeon would do all they could to do a graft. The upshot was each was justyfying their position without consideration for the patient and no communication.

From my experience the optician is best to listen to regarding lens tolerance and if lenses can be made to fit which can take a couple of visits which is why once first fitted you go back about four weeks later to check the fit. If it needs changing then they do it but in the eman time you manage will the ill-fitting lenses to maintain the weartime. This is what I have had to do for the past three months while we try and get a lens to fit properly.

Grafting should in my opinion be kept as a last resort as I have not seen enough published information to show that grafting a cornea that has not had lenses fitted is better than on that has been exposed to lens wear.

As for saying lenses will only last six months, well that depends on how quick the KC is progressing. 17 years ago my KC progressed at a rate that lenses prescriptions had tobe changed every 2 - 4 weeks and eventually resulted in 2 grafts. Lens technology is such now, that if they were available 17 years ago, my KC may have got to the point it settled and the grafts would not have been necessary. KC is that unpredictable.

I am all for grafts as mine have been a success, but I would still urge caution as when there are problems post graft, I get the impression that they are usually sereous.

If you have any doubts, any good specialist will be happy for you to seek a second or third opinion. I do know of some surgeons who 'sell' grafts as a KC cure which is WRONG. It is a long term management. Although grafts have been done for a long time, the information regarding their success is vague at the 10 and 20 years post op.

A medical definition of success is very different to the patient definition. The graft can be medically succesfull and leave you with less sight than you had before. For me a success is where the outcome means you have good useable sight when corrected with lenses or glasses allowing you to lead a near normal life. Anyother improvement on sight and quality of life is then a bonus.

Keep asking questions and sharing your concerns and as you gather more information, hopefully the confusion will clear and you will have the comfort of knowing any decision you make is an informed one.

Regards

Gareth