Re-graft

[Loopy-Lou]

Thanks and yes if anyone else has experience of re-grafts please do post here and let me know your experiences I would really appreciate it.

Anne are you aware of any research papers relating to risks to the other eye?
This worries me because I'm assuming it would mean no lens wearing which would leave me substantially visually impaired.
Rosemary, I have heard of unpleasant reactions to steroids leaving permament effects before, not relating to eye surgery. The usual topical one after surgery was mentioned, Dexamethasone, but no mention of oral steroids which I assume wouldn't enter the equation unless they couldn't control it topically or with the horrible jab. Then the question would be how long do oral steroids get prescribed for. Big difference between a couple of weeks and a year. I wouldn't currently have any opportunity to enquire further because I will be sent a date and so I guess the pre-op check appt would be the only time I could enquire further. Consultants don't have much time to answer questions. I also wanted to know more about exercise restrictions because the reg said 12-18 months for weight lifting but I think that means heavy weights, not lighter ones [I ain't no Arnie] and also CV equipment or dancing. I wish I knew the answers to those questions in advance as well.
God I didn't think about half of this last time...

[rosemary johnson]

Lou, it sounds like you've lots of queries, and I think you should insist on seeing someone to talk these through before a pre-op appointment a week or thereabouts before you're due for th eop - at which time rearranging your life at such short notice may be a bit awkward.
Consultant not have time for you? - do you want a consultant who doesn't have time to be bothered with your justiied concerns chopping your eye open??
Soory to be blunt...... insist on some answers!
As regards steroids - it was dexametasone they used on me; both i'v, in my eye during the op, and as eye drops. I've also heard of people "going loopy" on the dry powder asthma inhalers (pulmicort - budesonide), and I found a research paper on the web with a case report of someone having the same sort of "steroid psychosis" after an i/v dose of dexa the same as I had.
Or at least, I found the abstract and the link to the full paper, but couldn't actually read the whole thing. I pointed out the link to Matthew, whose first comment was that it wasn't clear why they thought the effects had been caused by the dexa not anything else, but later also referred to it as a previous case report in a letter to my ex-GP.
I don't know about oral steroids (tablets, I mean, rather than inhalers). NOrmally, they just rely on eye drops as rejection-prevention strategy. If for whatever reason, they decide to put someone on full-scale immuno-suppressants, I don't know what form those take.
Maybe someone who has been put onthem will chip in here.
As you
r regraft would be on account of the shape, rather than previous graft failure/rejection, they'll reckon that the drops will be OK.
BTW, is it usual, if you have a rejection episode, to be on HOURLY dexa? - even if you get straight in to A&E, I mean, and they don't reckon you need the horrible jab?
Rosemary

[Anne Klepacz]

Lou - I'm afraid I don't know of any papers on 'second eye rejection' - but I do know that John Dart in the talk he gave at the 2005 conference said it was much less likely to happen now that surgeons know more about keeping the endothelium healthy. And a lot of the stuff on the net about regrafts is about regrafts for all sorts of conditions where failure is more likely. My understanding is that KC has the best results both for first and repeat grafts. I also get the impression that a regraft done because the original graft has failed because of rejection is higher risk than one done because of a poor visual outcome. But I may be talking through my hat here - perhaps another question to add to your growing list!
Anne

[Anne Klepacz]

Rosemary - the hourly drops were only for the first rejection episode. Subsequent ones, when I went at the first sign, just involved upping the dose a bit, but not to an extreme level.
Anne

[Loopy-Lou]

Thanks Anne that's helpful, KC does seem to yield the best results overall, I'm trying to locate anything on second eye rejection, it's trying to find the correct way to ask the question to do a search! Anything I locate I will let you all know about.
My left eye did have episodes of rejection [about 2 or 3] then the vessells growing into it.

Has anyone been prescribed oral steroids and/or immuno-suppressants for rejection?

I've definately felt a bit mad with a 5 day course of oral Prednisolone but then I have existing madness

Well it's not that consultants don't have the time it's just you're aware they are going from patient to patient rapidly and it's hard to think of and bombard someone in 5 minutes, things are said, decided quickly and then it's the next person, know what I mean..I did ask the reg a question which she said he would have to answer but it seems like I wouldn't get stuff answered till the pre-op appt. I would imagine it would be hard to see a consultant before then.

[Andrew MacLean]

Lou

The volume of patients that a consultant will see in a clinic is one reason why I have adopted a policy of asking for 'time out' during my own consultations.

Actually, sometimes i have not needed to ask; my consultant has wanted me to go off for some examination or other and then return to see him. I use the time out of his consulting room to take stock of what has been said and think of more questions. If I am sent for a refraction, I get a chance to bounce my questions off the optometrist and refine them for the ophthalmologist.

I take a notepad (actually its my iPhone ) and jot down things I want to raise. I tick them off as we go through the process. If I am being asked to make a decision I ask if I can have time back in the waiting room while he sees his next patient.

This means that I not only have all the information I need to make a decision, but that I have also had time to process the information.

All the best

Andrew

[rosemary johnson]

Rosemary - the hourly drops were only for the first rejection episode. Subsequent ones, when I went at the first sign, just involved upping the dose a bit, but not to an extreme level.
Anne

Upping them a bit?
YOu mean, you were still onthem after the graft at the time, so already on, what 2 a day, 4 a day?
Have you, or anyone, an idea what sort of dosage might be prescribed for someone who's off the drops by now and starts what may be a rejection?
[Just idle curiousity; don't think I'd tolerate them anyway by now....]
Rosmeary

[rosemary johnson]

Lou, seriously?!
GOing a bit mad on 5 days of oral pred??? - I've been on that much (after a) an asthma attack and b) serious bout of respiratory tract infection and never had enough trouble to flag them up as a problem.
Then this.......
Lou, you won't see a consultant at your pre-op appointment. They are nurse-led. You'll see one nurse who'll do various routine tests (BP, peak rate meter, bllod glucose) then the main one who'll go through a lare and routine questionnaire and tell you when and where to turn up, and not to eat or have a proper glass of water for 7 hours before the due op time, and not even a little sip of water for 5 hours before.
You won't see a onsultant till about 5 minutes before they are about to wheel you down to theatre. By which time you'll have been sitting around in a hot, dry stuffy hospital ward for two and a half hours with nothing to drink for the previous 5 hours, and only a few sips for 7 hours, and if you can think straight in five minutes to get any sensible questions out, you'll be doing far better than I was! And you'll be trying to extract them from a surgeon already in his scrubs who patently oviously wants you to shut up and be a compliant patent and lie down and be knocked out and stop being awkward and asking questions.
And surrounded by ward staff who are intent on railroading yu along the scheduled path and not letting you think or ask or wonder....
... and if you've ogt a headache with all this, you can ask for painkillers till you're blue inthe face; you won't see any. Not till the anasesthetist shoots them up your arm.
I'm serious.
If you've got questions, queries, concerns, do something about them NOW!!!!!
WRITE to your consultant. Say you have been thnking about this and are concerned, and don't want to go ahead without asking some questions. Either write out the questions, or ask for another appointment to discuss them. Or both.
From what you've been saying, five minutes efore the op is the wrong time and place to start raising the issues you are concerned about.
Of course, you may be fine, and have no problems at all if you go ahead.
On the other hand.....
[You might just possibly be able to get to see an anaesthetist at pre-op - I did, but I had to insist, and sit around for ages while someone tried to see if they could find one, and then fall through the "system". Maybe I was on the wrong day..... I think Friday am they have the anaesthetists in pre-op clinic, so may be worth getting apptmt that day. (I rang to change mine as they sent me one in the post - when I'd very very specifically told them to RING!!!!! and arrange it and of course they sent one on a day I couldn't make. But I think both were Wednesdays.....)
Good luck.
Rosemary

[Anne Klepacz]

Rosemary - you're asking me to remember the details of what happened 20 years ago! Strangely, my rejection episodes stopped once all the sutures were out of both eyes and, touch wood, I haven't had another one since. I think I'll leave it to someone who has had a more recent rejection episode to say how many drops they took and for how long. I never needed oral steroids.
Anne

[Loopy-Lou]

Yes good strategy Andrew, agree Rosemary I need to ask more but we all know that letters go into the Bermuda Triangle, do you think if I asked for another appt with him before surgery I would get one?