UK Keratoconus Self-Help and Support Association

Forgive my out burst here, I know I am somewhat ranting on with this it's just, I am stunned tonight after a conversation I had online.
First if I may, let me explain some background. I have been thinking about this for some time. I'm referring to corneal grafts in general and something had occurred to me a while back, based on what my consultant had said and now with having spoken to some one actually wanting a graft, like a hair cut!

My consultant last year, had eased back in his chair with that frustrated look on his face. Now this is a man that I have known for 15 years on a professional level but I had yet to see that brief display of concern. He said, you might need a graft soon. Then explained it at that point in simple detail. Later after a few follow up appointments; every contact lens had been tried, other methods of treatment we equally discussed and rejected for various reasons. I could not see much at all, my eye ached, I was for all intents and purposes blind and would stay that way without the last resort of a corneal graft; and so started that process, after much consideration and information both positive and negative issues...

Today talking to some one online, not a member of this forum, not even from the UK but has had KC for a few years and is now demanding to have a graft! But I have tried to explain, that this sort of decision is not reversible and should only be considered an absolute last resort.
Regardless of the success rates, the encouraging statistics, the improvements of the techniques, skill and equipment, I've tried to point out, that with no scarring or other problems and that you can still see at least with a contact lens for even a limited amount of time, then surely why would you even consider the corneal graft, let alone demand one thinking;

1. It's a cure for KC
2. You're being denied something that you think you should have
3. You're fed up wearing lenses
4. That you'll get amazing vision
5. The side effects and other daily things aren't really a concern.

Just a few of the comments made that have concerned me that anyone would think of an operation of this sort that way at all.
Information, more so education and understanding what you're in for, in most circumstances I've tried to hammer home. At the eye clinic once, my consultant had said; some of his patients had approached him demanding a graft. To be honest at the time, I thought it was a tactic to make me take the whole thing seriously as he explained his total lack of being able to help me see in that eye, he would never authorise one of his patients to have a graft if they simply wanted it without first going through the processes of trying everything else, at least to a degree of satisfying certain conditions that would warrant a graft - but now, I see, probably he was just being honest! So the impact of his statement back then, has found a way of shocking me into incredulity!
Why on Earth, would anyone demand such a thing? How the hell do you convince some one they're making a mistake based on their current circumstances. If the doctor hasn't suggested it, surely there's good reason to wait. Frustration is not a reason to have surgery! Yet, all I have heard is; but other people can see better when they got their graft, can get away with wearing spectacles, I don't like wearing my lenses anymore and I don't even want to try a scleral lens. This person has 'researched' corneal grafts, has read 'success case' after success case and is now convinced a corneal graft is the next best thing.
But I took the stance, the daily eye drops, the potential for some serious side effects, the limits initially getting a graft puts on your life, the very slow heal process, even the daily back of the mind worry that something, a stitch might break and so on, all add up - this to me was a last resort, only easier I found to put up with the other half of all this because without having the graft in the first place I’d have had next to no sight at all - so whatever I got after the surgery was 100% better than the state I was in.
I have sat for the last 3 hours, searching the net and I have found, forum after forum, post after post all saying many different things but right now it concerns me, what some are saying, even suggesting and worse even promoting a corneal graft as an optional decision rather than as a measure (with risk) to hopefully restore some sight not make it all better!
Given my own personal circumstances, frame of mind and simple straight forward reasoning, I never once considered a graft as 'hey I fancy having that' at all. I even put the operation off late last year so I could travel because I knew I would need my focus and full attentions at least for the first few weeks. I'm trying not to overstate it, as the whole thing was rather underwhelming but still the fact remains. A corneal graft influences your life and those around you in many subtle ways, even in key aspects, it can be very stressful - something which I find not often discussed, many other sites, self promoting simply talk about the end result but I've seen and read little of the daily life between first having the graft and years on.
Even if its just the 8mths or the 2years, it is still a long slow process, even building your life for a while around taking eye drops at regular intervals, routine hospital or eye clinic visits and generally taking care of - lets face it - a transplant! I think, somewhere along the line, because it has become so common place, at least online and access to the information becoming more and more readily available regardless of the success it still must be noted having this done, changes your life, worse when it just doesn't reach prior expectations!

Is it really, a case of a corneal graft, being an optional solution to deal with Keratoconus in some minds out there? What is it that compels some one to want an operation over trying less invasive techniques? I suppose I could sit here all night, wondering that but it still doesn't change the fact, I know now, some one actively pushing for a graft with probably the wrong reasons in their mind. Running the risk of being seriously disappointed if their sight is no better, or worse, and that the 'success stories' they read are in my opinion by people who had extremely limited eyesight in the first place with many problems and little to no option left to them but to take on this procedure as anything was better than having a useless eye!

Wow. Follow that, as they say. I doubt I could do that justice, but here goes...

First of all, of course we forgive your outburst. Your thoughts are certainly shared by many of us here, but surely if someone wants to have a graft, then we should allow them that choice.

We should certainly point out what is, in our opinion, the error of their ways. We understand this condition very well, but we don't know the details of people's lives.

Society is now, for better or worse, geared around the quick fix, so it's not surprising to me that some people will go down that route. Those people who see a graft as being almost certainly better vision than they have now may choose to ignore the potential issues for that mythical quick fix. I know that my family were anxious for me to have the graft asap; each time I came home with contact lenses I had the "why aren't they doing the graft yet? "

I personally see it as our job to educate and inform (sounds a little like the BBC ), but not to control. We do after all live in a free country, and hopefully, so does your correspondant.

Each to his own.

Knight

I can understand what your saying but you never know exactly what the other person’s life is like having to deal with KC, and how they are able to deal with it. They get be depressed and seclude themselves from everyone and the real world because they find it difficult to deal with it and always wishing they could just see properly. For people in situations like this, surgery may not a daunting procedure as it is for others.

The things that you mentioned, it’s a cure for KC, you’re being denied something you should have, you’ll get amazing vision. People can strongly convince themselves of things and therefore may pay less attention to aspects of what kind of risks are involved with surgery. However, this may not be the case with everyone.

I agree with John’s comments about people wanting a quick fix to their problem, but only if a graft was that simple and straight forward to curing KC. I still walk passed people shielding my grafted eye being paranoid someone might elbow me by accident.

I, as a few others here, chose to have a graft as a last resort so any improvement would be worth while. My family was also pressing me to have a graft done. The best that can be done is to educate people when considering a graft of all possible outcomes so they are well prepared for any situation, and whether is it the right step to take at their current stage. The final decision if always their's and no one knows really their situtation better then they do themselves.

Asif

Knight

You put into words my own precise position on the graft. Like you I had lost my sight before I went through the operation: I was registered blind.

Actually, with the benefit of hind sight, I maybe ought to have accepted the graft a year earlier, but your point remains good.

The problem with glowing testimonials for any procedure is that they plant the idea that nothing goes wrong. A visit to this forum would give the lie to that position. I share your sense almost of outrage that ophthalmologists would offer cornea grafts (or other ophthalmological procedures) as something akin to a cosmetic procedure.

This, by the way, is part of the reason why I am a little uneasy about the work done in commercial 'eye clinics'.

The really hard thing is that we all stand and watch other people's lives from the outside. We may recognize some harm towards which they are running, but we have no power to intercept or even intervene.

If they hurt themselves, we have to be there to help them pick up and go forward. If they do not, we need to be blad with them that they dodged the bullet!

Keep on ranting, my friend.

Andrew

Knight

Shut it! and get to sleep!

You know your post basically summarised what many here; whom have gone through the graft (and yourself now) think!. There are those that think that the graft is a Cure!...And thats just utter b******s....I think Gareth one summarised that the Graft; along with others, is just a management strategy and something that can basically delay the effects of what KC brings. This bit of advice was soo true! When we make the choice to go the graft route; we expose outselves to another set of KC induced problems,concerns, issues (recovery, visual changes, rejection, etc)

However, part of the reason for this "light" approach to getting a graft can be attributed to Opthamologists. When we see our KC-Aware Optometrists; they will do there darn best to get us to see and invest alot of time (in majority of cases at a LOSS to them!!) in getting the correct fit!...only to have to do this all again in a matter of months!

The Opthamologists approach is; lets slice and dice, and here are the statistics to prove the success!! Whilst I would point out that not ALL have this approach; my personal experience has been out of 4 that I had seen, 2 had this approach.

This is where Information and Knowledge come into play! If these very same KC-affected individuals have all this at there disposal, along with the management strategies and options, we would more than likely see a decline in PK and DALK procedures!...However, as I often say......we arent Michael Knight and sadly one man does not make a difference in the KC world!.......thus collectively we can hopefully all make a difference to those that do have this perception that PK/DALK is the answer to there KC worries!

J

jayuk wrote:The Opthamologists approach is; lets slice and dice, and here are the statistics to prove the success!! Whilst I would point out that not ALL have this approach; my personal experience has been out of 4 that I had seen, 2 had this approach.
J

I have no doubt that many ophthalmologists take the 'slice and dice' appraqch that Jay disparages so effectively, but then you come across the occasional star in the firmament who wants to empower his or her patients and give back control of the management of their disease to the people best qualified to make a choice: propvided they have the right information on which to make their decisions.

In this regard, I reckon that I have been greatly blessed by the surgeons who have peered into my increasingly scarred eyes, and whom I eventually allowed to get about my corneas with their knives and needles!

But, the surgeon's reluctance to rush to cut was only possible because of the exemplary contaqct lens facilities we have here. I am not sure that I'd have been able to last as long if my optometrist had given up at the first sign of trouble.

Andrew

Knight!

I think that if you have chatted with a person from the USA the culture around graft surgery is different than in Britain and Europe. As where in Europe we may still experience that the exellence of Europes eye hospitals fail to give patients a new cornea, this is a problem that seems to be gone in the US. There has been a long history since the 60 ies with local Lions Clubs as founders of the first cornea-banks. Today the cornea banking industry is big business, and the surgery is of the best in the world. According to the online movie I posted here, the best surgeons no longer expect to fail with rejections and cause blindness.. Their challenge is wether to succeed in improving the patients vision as close to 6/6 as possible. Much of their success,they say, is due to the exellence of the cornea banks.

Knight,

I think the person you spoke to will soon change their attitude when they find themselves still wearing glasser or lenses to get the vision they want.

You have done what you can, there mind is made up, the ourtcome is something they and tey alone have to live with for better or worse. Just like marriage

Do you remember in one of the H2G2 novels, a space ship is concealed within an SEP zone. To all intents and purposes it was invisible.

One of the lessons I have learned with great difficulty is that I have to recognize the difference between things that are my problem and things that are somebody elses problem. Gareth is right, this looks like an SEP

Do what you can, give the best advice you are able and then it is over to the person who has to live with the consequences.

Its never easy, but that's the way it works.

Andrew

For the uninitiaited: H2G2 = Hitch-hiker's Guide to the Galaxy.

SEP = "Someone Else's Problem".