Son at Hospital

[Annie]

My son and I traveled to East Grinstead yesterday to see the consultant about having the cornea graft. His own consultant at our local hospital doesn't do them and decided Simon needed to be seen by the one at East Grinstead.

We had a 4 hour drive to get there but got there in plenty of time for his 9 am appointment. First of all he underwent several tests and then we saw the optician at the hospital, who agreed Simon needed the graft. We then had to wait to see the consultant. He said Simon's keratoconus is very bad in his left eye, infact he is blind in it now, the scarring is so bad. The optician said Simon would need a shallow graft, but the consultant said No, he needed the deep one. He is now on the waiting list to have it done, which we were told could be up to 6 months. They also asked would he go on the short notice list which we said yes.

Now, we were a bit scared of this consultant, He wasn't nasty, don't get me wrong but he had an air of authority about him that made you not want to ask questions. He also said the optician would go through all the for and against having the op with us, which he didn't. The optician just said to us that Simon needed this graft done because no contact lens would do anything for him because his 'cone' is quite deep too and wouldn't hold a lens anymore.

Anyway we just now have to wait for his op.

Annie

[naveed]

Hi

Annie ,

Do try Kerasoft 3 , type of soft lens , before you decide and also get 2,3 private advises before you get grafting done .

NHS is good but not always so do try other options.


All the best

Naveed

[Andrew MacLean]

Annie

If the scarring is as bad as you describe then it is probably right that there is no option but for a graft. No matter what lens you put over a deeply scarred cornea, the light still has to travel through scar tissue.

Before your son goes into hospital for the graft there will probably be a pre-theatre assessment when you will be told all the pros and cons. At that time you will be invited to sign the consent forms.

I think that surgeons cultivate an air of authority to inspire confidence in their patients. It is good to have confidence in the ability of a surgeon but it is also good to be able to ask questions. That is why I always write down any questions before I go to see my ophthalmologist.

If you feel a bit intimidated, say something like, 'I have a few questions, if you don't mind my asking them'. Your ophthalmologist will be delighted to hear your worries and answer your questions.

As a veteran of two grafts now, and having delayed the first until I was legally blind in both eyes, I can say that my own experience has been overwhelmingly positive. Do not expect your son to be able to see well immediately after the operation, but if his experience is anything like my own, his sight will recover and as he is young he should look forward to a life time of good vision.

All the best.

Andrew

[Annie]

Thanks Andrew for your reply. You have given me more confidence now. My son's scarring is very bad. I saw it myself on the monitor. Both the surgeon and opthamologist said his scarring is really bad and that he couldn't see even with a lens. The opthamologist did say it would take at least a year for the operation to settle and even then he would need either glasses or contact lenses. They also said after around 18 months they might even be able to laser to improve his vision but all this is down the line, so to speak.

We will have to write down all our questions next time. My son is resigned to having it done as he has tried umpteen different contact lenses and they just won't fit. And he is nearly blind in that eye now.

Annie

[rosemary johnson]

Hi Annie,
I too was given figures of 12-18 months for a graft to settle down to be refitted with lenses.
In fact, you CAN wear lenses before then - ut the eye is still changing so fast that the lens goes "out of date" as fast as they can be prescribed adn ordered and collected.
It is possible to wear sclerals much sooner - because they are so big (c. 1" diamater) and fit well clear over all the grafted area with a reservoir of tears behind the lens, a fair amount of the lens changing shape can be accommodated within that tear-space. HOwever, you can still be rushing out to the supermarket for cheapo reading glasses every couple of months.....)
I was also given figures of: roughly 50% of poeple wear a lens post graft and about 40% wear glasses and only about 10% get good enough vision not to bother with either.
Good luck to your son - keep us posted.
Rosemary

[Annie]

Can anyone tell me how long my son will be off work when he has his graft done? We have been told nothing about this. We don't really know what to expect. I have read somewhere that he will have to keep his head still for a couple of weeks, but that is all we know. He has received his letter from the hospital to say that he is on the short notice list and they will call him when a donor becomes available. Can anyone advise us how and what we have to do after his op?

Annie

[Anne Klepacz]

Hi Annie
I know we keep saying it, but everyone is different! I took 3 weeks off work after each of my transplants. Some people here have gone back to work quicker than that, others have taken a few months off. It partly depends on the work people do and the sort of conditions they work in. General anaesthetic takes about 10 days to work its way out of the system, so that's probably the minimum time to take off. And some people manage to negotiate with their employers to go back on reduced hours initially, rather than going straight back full time.
30 or 40 yrs ago, people were kept in hospital for 3 wks after the op, but those times have long gone! Most are out the same day or the next. The main restrictions are not to lift anything heavy for several months. Beyond that, people are usually given a shield to wear over the eye at night. This is to prevent anyone accidentally rubbing the grafted eye in their sleep. And of course, there are regular eye drops to take for 6mths or so. Every few hours to start with, but then gradually reducing down to 3 times a day if my memory serves me right. I was quite light sensitive in the operated eye for several weeks after the op, so wore sunglasses all the time. There's lots of people here who have had grafts more recently than I have, so will be able to give more information and advice.
I hope the wait isn't too long, and that all goes smoothly.
Anne

[rosemary johnson]

Hi Annie,
Depends really whether he is having his op under local or general.
If he has it under local, he could be back two days later (not the next day, as they'll undoubtedly want to see him back at the hspital for a check up and dressing change and set him up with his eye drops,e tc). That is, so long as his work doesn't involve heavy lifted (Banned for several weeks), dirty or dusty atmospheres, or bright lights he cannot tolerate.
If he has a general, they'll probably tell him to allow two weeks.
I actually went back to work - sitting at a desk shuffling paper about at a temping job - 13 days post op... and ended up lying on the floor in A&E feeling faint, gasping for breath and too dizzy to sit up on a chair - and being treated as a stupid, drug-addled moron by a hospital whho apparently had no-one at all on the premises who knew anything about anaesthetics or people who might have adverse reactions to them!!!! - formal complaint about that still pending, but believe me will be seriously acidic!
It does really depend on how well he recovers - in terms of the eye itself healing (if all is well, no problems, but sudden rejection episodes or infections could mean dashing back to hospital), and in terms of things like how much pain he gets, how light sensitive, etc, and how he recovers from any anaesthetics. And, of course, what the job is.
I've still not gone back to my "official" self-employed work, and am still not yet healthy enough to be "pulling my weight" properly at the jobs around the stable yard (my interest in life!) - though both of these are because of my, hopefully uncommon, severe reaction to the anaesthetic.
I hope and trust he'll have none of these problems! (Is E Grinstead one of those hospitals where they routinely do grafts under local?- he's lucky, if so.)
Rosmeary

[Andrew MacLean]

After my first graft I was off for six weeks. I think that this was because my ophthalmologist didn't trust me to be careful over the Christmas period

After my second graft I was off for two weeks.

There is no particular need to 'keep your head still'. What you have to avoid is bending over; straining or doing anything else that would tend to raise the pressure inside the eye. Someone handy to peel grapes is a good idea

Andrew

[lcogrady]

Hi Annie

I am booked in to have a graft on 8th Jan and I have been advised 2weeks and then go from there which seems pretty reasonable to me. I also have bad scarring right in the centre of left cornea so sympathise with your son. A friend of mine has had both his eyes grafted at East Grinstead and has had success with both for some time now, he also had about 2-3 weeks off with his ops.

Andrew- I will let my hubby know about his grape duties!!

If your son goes in before me I wish him the best of luck otherwise I will keep you updated on my recovery

All the best

Lucy