ambiguity and frustration in sussex !

[Mark]

Hello

Once again can I just say that this is a very very impressive forum. Just a quick aside my sister is working on a NHS research team dealing with questionaires from patients with keratoconus. She found that while the NHS was excellent with resolving keratoconus on the operating table. It was less that satisfactory with advice and care before and after operations and did not provide sufficently adequate advice on changes to lifestyle. It was brought up in some of the feedback forums submitted that this forum filled a much needed gap. So thank you

If I may just ask first before I go on to explain. I am intending on going surfing at the end of the month (Aug). This is about 3 and a half months after my DALK operation. I would like to ask what would people do in my position ? - I only ask if you are reading this, please read on before answering !

I am very active and it is really important to me, I have constantly stressed this to every doctor I have seen since I was put on the list for a DALK last year. I was told by a registar in Feb 07 that 3 months after my operation I would be able to get on with life. I told him that I intended to go surfing in the summer. I was told "well in the first three months surfing/swimming totally out. Then depending on recovery it should be OK, but would will have to have some protective eyewear".

Although my 3 month check up was cancelled with out any warning, they like to bump me. I still turned up and then state that I am off surfing in France and I would really like to be checked out and for some sign off In light of previsous conversation I was not expecting a problem. 3 months after the operation pressure is down as is the thickness and everthing is going OK. I always hoped the recovery would be as spectular as some of the stories I have read on here but it is steady so I can not complain.

As for the surfing, I have of course bought some excellent protective eye wear a cross between swimming googles and a diving mask. I throughly recommend them as they are brilliant and go by the name aqua sphere.

However the doctor on this occasion spends 10 mins being agressive using scare tactics and then gets in a huff when he hasn't convinced me. This was though rather more to do with is attitude rather than the quality of his arguement. I said that the vision is still blurred and really need a contact lens for the DALK to help with headaches. I am subsequently told that I'll have to wait until Feb 08 marvellous !

As for the surfing I throughly understand the risk is increased as there is a possible chance of infection. But please note if i was told 6 months then I would wait 6 months. Every time when i ask a direct question about whether I can go climbing surfing etc I get told some ambigious answer which involves the words "wait and see" (I don't think the pun is intended). Then when push comes to shove and I say I am running a marathon in Sept I get one doctor saying one thing another saying the opposite both using the words "wait and see" ! The commitment isn't too strong until I get to the surgeon. Then is yes or no ! Hwoever I have only seen him once and in between there is very little understanding of how I would like to go about living my life. In the meantime active changes that might give me the opportunity to live I get told that I have to wait another 6 months !?!

As a note of frustration, for the past year since June 2006 I have had various doctors telling me what I can and can't do ! but the consistent key message has been "be a vegitable and wait until we say its OK". I have found that the only person that really knows what is possible is me in that respect based upon how I feel and the stories and ancedotes from this forum !

So I'll open this up as I have family members who are a little nervous so I thought I would see what some other experiences where and get some idea !

[GarethB]

Mark,

To be honest post graft we are always going to be at risk of infection which is why we take precautions such as you getting a swim mask. I have one from Spedo which allows me to go swimming with my lenses in so I can see what my daughter is up to.

The wait until 2008 for a lens may well be to give the DALK time to settle as from what I read on the forum, after a DALK the vision is changes for a good 12 months or more, so it is possible a lens fitted today would be useless by the time it was supplied to you.

Sorry can not be much further help.

[Lynn White]

Hmmm....

You know this isn't a conspiracy! You are dealing with ordinary people who just happen to be professionals... they are not God.. they cannot predict the future. Look at it from their point of view. They say you can surf.. you get a nasty infection and your graft fails... they can be sued from here to eternity. You can say you take the risk but at the end of the day any competent lawyer will advise you to sue the person who told you it was OK.

No-one is going to tell you any different about your graft. No-one is more active than Gareth. He drives fast cars and pushes himself to the limit but he understands that is HIS decision if he wants to risk his eyesight. To him, life in the fast lane is extremely important but he does balance his risks very carefully. You obviously share his passion for risk - but please do not try and force professionals who have only your best interests at heart to sign off on your lifestyle.

In the end, yes, you are very active but this is your eyesight and your entire future we are talking about. A graft is a very delicate thing. It is for life. It should be protected at all costs. Would NOT surfing for ONE season really spoil your entire life? As opposed to risking infection or trauma to your eye? The doctor you are dissing because he tried scare tactics has probably seen hundreds of freak accidents and incidents. I have myself. I always remember the 16 year old girl who was blind in one eye and was cutting open a bag of onions with a a sharp knife - it slipped and penetrated her good eye. A freak accident, yes. But we professionals see this sort of thing all the time. We know that these things can happen. We know its sod's law that the worst can and will happen.

The doctor was trying to help you. He DOES know best because he has seen it all. Yes, he is vague because he cannot tell you that something will definitely happen. Nor can he tell you it won't. I rather think he was hoping your common sense would prevail here.

If you came and asked ME I would say - forget it. Take one little year out and do something else. You have the rest of your life in front of you. Your graft is the most precious thing in your life right now. It needs TLC!! Yes, you may have to wait for a contact lens because a lens imposes stresses on the cornea that it may not tolerate if you go for it too soon. If you read some of the threads here about grafts you will see most people had to wait to get any kind of positive result.

Its up to you in the end - the professionals have shown that they do not think surfing is a good idea. If you choose to ignore their advice then that is your decision.

Lynn

[Simon Hare]

I think the issue is more about the kind of advice given, not what the advice actually said.

I too got very little information about KC from my Sussex based Doctors, the 1st Optom couldn't even be bothered to write Keratoconas clear enough for someone WITHOUT KC to read, let alone me! So for the first 2 years after diagnosis i didnt even know what i had, what would/could happen in the future. After constant questions to my high street optom and hospital optom i got nothing more than 'A normal eye is rounded like a ball, - yours are conical like an egg'

After moving house to Surrey (Coincidence, not planned) I am much happier with my new High street optom and the same hospital (allbeit a new optomitrist there) My high street dude told me the ins and outs, and actually - for the first time - taught me how to spell Keratoconas, so i googled it and found this site (via a USA based KC site) Everything I didnt know has been filled by members here.

So now, when i see a specialist of any kind i can say, 'But what about XYZ, I heard that there is blahblahblah' and they look shocked and then actually see you as a person instead of a patient.

Thank you all for the help and advice so far, and thanx for the help and support i will rely on in the future

[Andrew MacLean]

Simon

I guess you run against the problems that arise from the refusal of life to behave in an entirely predictable way. If the 'machine' metaphor worked better then surgeons would be able to say 'bolt this on there and the result will be xyz'. Sadly bodies ar enot entirely mechanical; they are also alive and life tends to be unpredictable.

Take your DALK: if you imagine your eye as a grape and they eye of the donor as another grape, somebody has taken a disc from the front of your eye, leaving an area of endothelium exposed. Somebody else has taken a disc from the eye of a dead person, and the endothelium of that disc has been removed.

Next they have placed the dead person's disc into your eye. Now the curve of the donor eye may not exactly match the curve of your eye; the level of 'touch' between the donor tissue and your own eye may not be entirely uniform. Thus they cannot exactly predict the rate at which the new tissue will 'heal' onto your own eye and become, to all intents and purposes, part of you.

Ophthalmologists have to judge how they pitch their advice. Do they give the most optomistic appraisal of the potential healing time, or do they give a pessimistic appraisal? I am not sure that there is a correct answer to this question, not least because every patient is different.

In the end, of course, whether you go surfing or not is up to you. Be aware that there is no such thing as a risk free venture into the sea. Weigh the risk to your sight against the thrill of surfing a wave. Remember that choices are for you to make; after all you have to live with the consequences of your choices. Your doc will give you all the advice (s)he can, but in the end you are the only one who can choose.

Do not expect your doc to tell you that it is okay or 'safe' to do things that are only fun because they are dangerous. (I used to be a skydiver and I still enjoy climbing mountains). If you need permission to go surfing, you are probably better not going. If you go surfing without permission and you get an infection in your eye then you have made a choice that has led to harm with the potential loss of your sight.

Life is unpredictable and that is what makes it such a thrill each day to start out on a whole new phase of the adventure!

All the best

Andrew

[Simon Hare]

I guess the post above (Andrews) was meant for the starter of this topic (Mark), not me (Simon)!!

Great advice still!!

[Andrew MacLean]

Correct! Oops.

Andrew