4 more questions

[tf5]

i have 4 more questions further to my previous post, thanks again for your kind responses.

1- is taking immune boosting herbs and supplements on daily basis , going to be a danger to the transplanted corenea?
like green tea,vitamin C,echinacea . so all these must be avoided for the rest of my life? i hope not...

2- cross-linking , one doctor told me it stops the the disease in its place, another doctor told me i should never do it , as it only stops the disease temporarily (1-3 years tops) with some additional unknown risks.
in your opinion or experience, who is right and who is wrong!!?

3- i have nightmares during all the last 2 weeks , i also wake up several times in midnight to check if i still can see!, how fast can the progress of the disease be? is it possible that one day i will wake up in the morining with a sudden decrease in vision because of the disease? or am i being too anxious?

4- how does the failure of the corneal transplant occur? same question, is it possible that one day i will wake up in the morining with a sudden decrease in vision because of the failure? or does it happen very slow so i have time to arrange for a new transplant?

many thanks

[rosemary johnson]

Hi - some attempts at answers:
1. you should tell the hospital staff when you go for your pre-op appointment about any medications you are taking - including herbal remedies, things you buy yourself from pharmacies or health stores, supplements, etc. If you've any concerns about them, do ask the staff you see. If they have any concerns, they'll tell you about them - for example, you should stop taking those for a few weeks.
Most people who have grafts (unless they've had to have regrafts, anyway) just use steroid eyedrops, and aren't on actual immune suppressing drugs.
2. This is a fairly new procedure, so probably no-one is totally sure! there are studies on effectiveness, but no data more than 10 years old.
3. if you wake up one morning and the whole world looks very foggy, or worse still completely white - through an UNGRAFTED eye - this is probably a hydrops. There are other threads on hydrops and iirr an explanation posted somewhere onthe site. Basically, it is where the membrane at the back of the cornea splits and lets fluid through that soaks the tissues in the cornea. It WILL heal up - but it may take a few weeks. SOme heal up very well, some actually stiffen the cornea and make the KC better (or slow it down), and sometimes unfortunately they leave scarring that interferes with vision. ut the whiteness and fogginess don't stay with their initial impact.
These are quite rare, and it is apparently very very rare for anyone to have two inthe same eye. Of course, Muggins Here had three inthe same eye........ you have to rewrite the rule books for me.
4. If a grafted eye ever becomes red, sore, streaming, and the vision getting blurry and/or white and foggy, this could be a rejection episode. YOu need to get to your Eye Hospital A&E or nearest eye A&E centre, and tell them you've had a transplant and what is happening. It may be a rejection episode. If so, they will probably give you steroid eye drops to fight the rejection, to be put in with monotonous regularity. It is not the end of the world, as most rejection episodes can be reversed if they are caught intime and given the right eye drops.
Very occasionally, rejections episodes do take over and can't be reversed and the transplanted cornea is rejected. Or very occasionally, the graft just doesn't take at all. In which case, you'll have got rather fed up of trips to the hospital to have the specialists peering at it, trying different steroids, or actual immuno-suppressant drugs, antibiotics if they thinks it might be infected as well, etc etc, and debating what to try next.
SOme people do have repeat transplants.
If/when you get lined up for a graft, you'l have a chance to talk to the medics about the signs to watch out for, and what to do about them.
Hope this helps.
Rosemary

[Anne Klepacz]

Hi tf5
The only point to add on q3 to Rosemary's comprehensive reply is that only 1 or 2% of people with KC ever get a hydrops (though there's probably a higher percentage on this forum because we tend to be people with more advanced KC). And apart from a hydrops, the changes to the vision are much more gradual - which is why deterioriation in one eye can 'creep up' on people who don't realise it's getting worse because the good eye takes over.
Anne

[tf5]

thanks rosemary and anne
i hope for more answers from other group members ...