I'm Officially Grafted!

[rosemary johnson]

This may sound stupid.......
I have the big wrap-round polarising sunglasses.
WHen I don't actually want or need them in front of my eyes - and sometimes it is too gloomy to be looking out through shades - I can still sometimes find it very helpful to have them pushed up onto my forehead.
As if they were acting as an extr "brim".
SOmetimes I've even found this indoors - too dim with the shades on my nose, but great help to have them pushed up onto forehead.
I think maybe it is because they cut down glare from overhead lights.
Or maybe I@m just crazy.....
Rosemary

[Andrew MacLean]

Another approach is to wear a broad brimmed hat, or one of those shades that you used to see in American films when people were sitting round the green baize playing poker.

Andrew

[matty102008]

Hi all,

I was just wondering what happens to your eye sight after the graft? Does it rid you of KC? Does anyone know a good clinic in the west midlands as at the moment i am on the nhs and dont feel like am getting enought information from my eye clinic?

Thanks matty

[Andrew MacLean]

The immediate result of the graft will probably be 'no change': the eye is quite inflamed, there are sutures holding the new cornea in place and the healing process has only just begun.

As time goes by there was a noticeable change for me, and this came fairly quickly. My progress was measured in refractions taken at successive clinics, so an objective measure was made of both improvements and regressions in my vision.

I now see well enough to drive wearing glasses for my right eye and a contact lens for my left.

Andrew

[red-eye]

Hi all,

I was just wondering what happens to your eye sight after the graft? Does it rid you of KC?

Thanks matty

I've heard that KC can still return on the grafted eye - is this statement right guys?

HI red eye

Great to hear things going well.

I am sill on chlora 4x a day and dexa 6x a day. Not taking anything else but got the cerlluvisc for when eye gets dry.

I cracked my shield whilst trying to clean it. Each time you peel the tape off it leaves a bit of glue from the tape on it. Got to the point where I thought i better clean it but it cracked as I was doing it.

I've been back at work 4 days now and is going ok. Get bit of headache and having to make sure I have breaks between looking at the screen and stuff. The artificial lights in the office don't help either.

Thanks pal.

As of today I've stopped the chlora, that makes my life just that little bit more easier.

Yeah the shield is great but the stickiness of the micropore takes an major effort to remove, I've been changing the tape usually every 2/3 days.

Couple of questions for all you grafty people... At what point did people start noticing a change in your vision for the better, was it months down the line, after stitches were removed etc? Also when did you stop taking eye drops (except for dry eye)?

Cheers,
Red

[rosemary johnson]

I was on:
antibiotics (chloramphenicol) for 2 weeks - prophylactic. (Note: I gather that in times past, it was common to be on antibiotics for longer. These days, with increasing amounts of antibiotic resistance about, there is more concern about the health professions that giving people antibiotics "just in case" just nothing but encourage the bugs to develop resistance, so they are used much less).
dexamethasone for just over 11 months - though I onserve from a note in my records from corneal consultant to glaucoma specialist that she'd have been happy for me to stop the dexa. after 8 months if he'd wanted (steroid anti-rejection drugs can be cause of glaucoma).
am still on lumigan - anti-glaucoma drops - once a day; started on one type of glaucoma drop in July, changed to lumigan later as first sort was upsetting asthma, later added a third type which I've now stopped.
Dexa gradually reduced in dose from hourly-while awake (theoretically!!!) for a week, then every two hours, then 4 times a day, then twice a day, then once a day...... hourly was only for a week, can't remember dates of changing down each dosage off-hand.
HOpe this helps.
Rosemary

[red-eye]

Hi Rosemary, many thanks for sharing your experience.

I too am on the Lumigan drops (once at night) as I seem to be sensitive to the dexamethasone. You were on dex hourly for a whole week!? I was on it hourly just for one night and found that hard, a week and I would have ripped my graft out lol!

From what you have said, can I conclude that pressure can still rise even if you have stopped the dexamethasone? If that's true then its something I wasn't aware of and worries me. Have you been told how long you will be on the Lumigan drops, are they permanent?

Thanks

[rosemary johnson]

Hi.
I think there's a bit of confusion.
Dexamethasone is to stop the transplant rejecting. It's an anti-inflammatory agent, specifically a synthetic gluco-cortico-steroid. The idea is, if your graft is not all swollen, inflamed and sore it is less likely to be rejected.
However, steroids can actually CAUSE the pressure to go up - and can cause cataracts - hence the hospital keep checking your eye pressure (IOP) regularly, and if it goes up too much, they put you onto pressure-lowering drops too.
I was told to put in dexa drops hourly while I was awake, on the follow-up visit to the hospital the day after the op, and told I could reduce it to two-hourly at the (total mess-up of) week-post-op apptment.
That is, once I went to bed at night I stopped till the morning - I wasn't expected to keep waking up to put eye drops in every hour. In fact, for the first week, because of my awful bad reaction to the drugs I'd been given, I don't suppose I was awake for less than 20 hours any day, and I'd be surprised if the eye got as many as 10 drops a day.... I did not know then it was a huge (for my system) i'v dose of steroids causing the problems - or I'd have stopped all steroid meds full stop - and maybe gone straight to A&E for a rethink. Wish I had; that's another story.
Lumigan is one of the possible pressure reducing eye drops. It's something called a prostaglandin analogue. The idea is that you make new internal eye fluids all the time, and they are slowly draining away all the time. If you start producing new fluid faster than the old drains out, you get a build-up and the pressure rises. The aim of the Lumigan (an dother prostaglandin analogues, such as Travatan) is to speed up the through-flow of eye fluids so you don't get pressure building up as volume increases.
There are other types of anti-glaucoma (pressure-reducing - glaucoma is a disease of the retina caused by too-high pressure).
The normal "first choice" are beta blockers - Timolol is a common pressure-reducing eye drop - but they can't give me those, because I use 3 differen types of asthma inhaler which are all betas - betas and beta blockers together cancel out an dnone of them would work, so that's no good!
Ironically, there is another type of pressure-reducing eye drops which are also betas! - Iopidine was the type I had for a while. They work by reducing the amount of internal eye fluid you make. Then the Lomigan helps it run out more quickly. In my case, not a good idea, as I'm prone to dehydrate badly anyway (!! - the cause of all this mess in the first place) and I kept waing up inthe night with half my head feeling dehydrated and horrible - lubricating eye drops did nothing, only effective remedy was getting up and drinking a couple of pints of water and getting circulation moving a bit. (Then, of course, woke up agian a bit later for another reason...!)
AAfter a it of this, took strategic decision this was no good, and reduced Iopidine. As pressure was better last apptmt they said I could stop that one.
Basically....
the corneal surgeons want you to stick onthe steroids (Dexamethasone; or Prednis(ol)one is another they use, or Lotemax as they tried me on once.
Because they want as No, 1 priority to make sure the graft doesn't reject.
But because the anti-rejection drugs can push up the pressure, they have to keep monitoring your pressure,a nd give pressure-lowering drops too if it's going up.
HOpe this makes sense!
Yes, the eye pressure can still go up even in people not taking dexa, or other steroid eye drops. Or, as in my case, it started to go up 6 months after the op with no signs of it rising before - so whether it was steroid hypersensitivity kicking in (I'd just reduced the dexa to twice a day, IIRR), or "just one of those things", we don't know.
Of course, plenty of people who don't have KC and haven't ever had a graft still get high pressure - take a look at the queues in the glaucoma clinic waiting room! I'm not an expert, but IIRR, risk factors can include family tendency to glaucoma, just getting older, or living in parts of the world where you're taking malaria tablets every day.
I don't know how much longer the Lumigan is going to go on - I hope that next appointment I'll be told the pressure is still at reasonable levels and I can stop it - not least because, now I'm stopped the - anti-inflammatory - dexa, the Lumigan is making my eye feel red and sore and the eyelid tender and swollen and prone to styes - like when they first put me on Travatan (had to change to Lumigan because of the bad reaction to Travatan).
Rosemary

[Andrew MacLean]

Another possible side effect of prolonged steroid use is the development of cataracts.

Andrew

[rosemary johnson]

Another possible side effect of prolonged steroid use is the development of cataracts.

Andrew

I did say that, Andrew!
Unfortunately, if they think they can see a contaract int he offing, there's not an anti-cataract drop they can give you to ward it off. They just reckon that cataract ops are now so standard and routine they may as well let it develop and then do a cataract op.
For most people that will probably work as well as anything (though not everyone gets 100% success with cataract ops, and for me it will be impossible methinks, but htat's another story.)
Rosemary