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Post Info TOPIC: Chances of a Transplant?
Anonymous

Date: Fri May 27 6:45 PM, 2005
Chances of a Transplant?
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Well...the following what I am going to write has always left me feeling cold from the very begining...However I kept it to myself and has been one of the driving forces which started this journey in this TANGLED WEB!!!


 Its been documented that the chances of having a corneal transplanation is around 20% and that it is a minimal chance!... Now if we look at that....it means that one in five people have a transplant....which I think is a lot...far too much.... This means on a personal level that someone I know in kc will have a corneal transplanation! Of course we know more people than just five people with kc...and that brings it home for me that some of my friends may have to go that route...that is very difficult for me to take...


NOW... what about childeren with kc... they have longer for there kc to run... is the percentage more!!! in that the 20% needing transplants is an average? ...so whats the average for childeren? We need to know so that we can plan ahead for our childerens future... i mean it could be a very high figure and by finding out what the true figure is then we can get to work to reduce this figure!! 


Even the mis-leading figure that 90% of grafts are successful (well from a patients prespective it is not!...as many people still need contacts afterwards even though they was forced to have a transplant because they WHERE intolarant to contacts in the first place!...and not forgetting all the other bad aspects of a transplantion in Quality & Saftey for patients)...that means that one in ten will have major trouble with the grapht... Even if that figure is put up to 95% that would still mean that one in twenty people will have major problems after surgery...


I have always felt these stats. to be something very disturbing (not even forgetting that the life of a transplant has been reported in studies to be much lower than people previously thought!)...and it has been one of the driving forces and why I wanted to do something else instead but just hanging around....and it is a race against time!!


The great news we are getting from the X-Linking treatment...may have come just at the right time... I think X-Linking have answered much of my question in kc (Including possibly protecting our contact lens wearering friends against any harm and dis-comfort from contacts on a much more strenghtened cornea...which hopfully would be the additional benfit of having the X-Linking treatment) There is a great need...and I feel its just a matter of time...and the will is definately there! 



-- Edited by QuintriX at 20:50, 2005-10-11

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Executive

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Posts: 397
Date: Sat May 28 4:04 PM, 2005
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I agree... it amazes me how the maths of treatment can be corrupted to show us just what we need to see.


The multi national companies that control medicine juggle these numbers at will. It is naive to think anything else... disease equals money. Read the articles contained in their annual general meeting press releases-- 'the FUN that can be had with RGP's' etc-- these are org's that are out of touch with the patients they claim to represent.


Contact lenses = friction = thinning of an already weak cornea, its a contention that has been stated time and time again... only to get lost under the pile of glowing contact lens company information that floods the internet. The same can be said of the cut and paste mentality behind many corneal grafts-


It is truely warming for me to see some of our members taking a brave step past all the propaganda and making discisions based on their own intelligence.


Hari



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Date: Sat Jun 11 10:49 AM, 2005
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Hi Quintrix,
I know what you mean about the transplants. When I was reading about them, I always assumed that my son, who has the KC, would maybe one day way, way in the future become a candidate. When we went for the cross linking treatment, we were told that he would be a candidate now for a corneal transplant, but that we should wait as long as we could since the younger you are, the less likely it will "take".
I think I stopped breathing for a second when we were told he was a candidate now! We were told by more than 3 doctors he didn't see out of his right eye, but I guess the denial still kicks in (doesn't see - what exactly does that mean? I don't see well out of my right eye either because of a lazy eye, and I'm just fine, so doesn't that mean my son is just fine too?)
At least we won't have to use the corneal transplant option right now, and won't for many years to come (at least we hope so). You are right about the statistics. I took a statistics class in college once and the only thing I remember from it was that you can make statistics look different by including or excluding many factors. Just like statistics done at a hospital on patient deaths during operations can change drastically if the doctor closes up the patient after the operation and only has the patient declared dead after the operation is over!

So I try to read information about statistics with a very open mind - and not believe everything I read.

Even though I remember reading somewhere about the mini-arks - my short term memory just isn't what it used to be. Who can explain what that is?

Dina

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Dina Golan


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Date: Sat Jun 11 7:05 PM, 2005
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Hi Dina,


In answer to your question Mini ARK (Asymmetric radial keratomy) is a KC treatment developed by Prof. Massimo Lombardi in Rome, Italy. You can read in depth about the procedure if you follow the links under 'FUTURE NOW' KC micro surgery- A place to discuss Mini Ark on our homepage. Or you can visit the prof's website at: http://translate.google.com/translate?sourceid=navclient&hl=en&u=http%3A%2F%2Fwww%2Elombardieyeclinic%2Ecom%2F


I have personally undergone the procedure and are returning to Rome this weekend for a checkup... if you have any questions please dont hesitate to ask. I believe that you are based in the US and as such are restricted in you options, but we do have a member based in Los Angeles whom has had the Mini Ark.


Regards,


Hari


 



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Date: Sat Jun 11 7:25 PM, 2005
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By the way the link above to Prof. Lombardi's site is via the google translator, so some of the english may not make a lot of sense. But there is an english section to the site if you click on the icon in the top right hand corner.


I know your son has already undergone cross linking but it dosnt hurt to keep up to play with all the options available to KC sufferers.


Regards,


Hari Navarro



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Anonymous

Date: Sun Jun 12 2:55 AM, 2005
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Hi Dina,


Just been tring to put together a great birthday party for my son...he is three today!...


Anyway...I think it is all ready for when he wakes up this morning!...Bless him...


ohhh yes kc..lol..


I never knew about the fact that if your younger that it is harder for a transplant to "take"....you do learn some thing new every day! 


...and why did the doctor say that his a candidate for a transplant?... Can he no longer wear contacts at all?


About the vision...well I think if you can see out of one eye ok...and next to nothing in the other eye... things like judging distances is not a problem as both eye are need for that... as long as you got some vision in the worst eye... and in kc you don't go totally blind... so I think that is at least a small blessing!


My one eye...is better than the other one...however because you usually have both eyes open i don't know that i have a weaker eye... i suppose it has got to do with the degree of your kc you have as well.


When you say about stats Dina...and hospitals... someone was telling me about the fact that some doctors in "Accident and Emergency" departments... to make their stats look good and their work easier... they say to the patient that everything is ok and go home and rest and not admitt them in hospital to be cautious... and if something happens to the patient then it is not the hospitals fault... as they are not in hospital!!!


Anyway Dina its really great to reading the very intelligent posts that you write... and don't hesitate to ask as much questions as you want to ok...


Take Care


 



-- Edited by QuintriX at 03:13, 2005-06-12

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Date: Wed Jun 15 12:32 PM, 2005
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Hi Quintrix,
Happy birthday to your son! 3 is a great age - I love that , 4 and 5 the most. I used to work in a kindergarten - at that age they soak up EVERYTHING, and you can teach them practically quantum physics - if it's done in very simple language!

I, too, was unaware of age problems in corneal transplants. From what I was told, the younger you are, the stronger the body is, especially one still developing, so it is much more likely to reject a transplant. I was told to wait until his 20's and Boxer Wachler told us to wait until he was in his 30's if he could wait.

Why is he a candidate? Because it progressed so much in one eye, even with corrective lenses, he won't see anything but "fuzzy". I even mentioned my hesitation to get any form of corrective lenses (contacts) if fuzzy is the best he'll get in his right eye, but Dr. Boxer Wachler insisted that with fuzzy vision in one eye and 20/20 in the other, it will give him the depth perception he needs to function in normal active day to day life - especially since he participates in sports.

As for seeing well in one eye and not noticing the other eye being bad - this is precisely why our son got to the point he did without noticing he is pretty much blind in his right eye! The left one takes over and fools the brain into thinking you see with both eyes, but one is really doing all the work. I have a lazy eye, so my left eye also does the work of two eyes. This is why, when the first eye doctor said my son doesn't see out of his right eye, I assumed (incorrectly) that he also has lazy eye.

I think this "function" is pretty neat - using one eye only, and not noticing one doesn't work. Wish other parts of the body could do that!

Thanks for the compliment on my "intelligent posts" - when this whole subject came up in our lives I felt very stupid! When our first doctor got flustered, threw the diagnosis at us and told us to come back next year, I should have realized something was up, but I guess in the end it all worked out.

A sidebar - since our whole family has been revolving around this subject these past few months, I would like to mention something kind of humorous that happened to us. We took a side trip to Las Vegas when we went to the States for the cross linking, and stayed in a very fancy hotel for a special deal. In the bathroom, there was a magnifying mirror with a light around it. When I looked into the mirror, I saw in my irises the circle that is just like the one you test for KC. I excitely told my husband all about it so we all gathered around this magnifying mirror and tested all of ourselves. My husband saw, for the first time, how the circles look on our son's eyes as opposed to all of ours (which thankfully were perfectly circular and not ellipsical like our son's). It was a relief to see that we were all fine, and my son was fascinated with his ellipses!

Dina



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Dina Golan
Anonymous

Date: Thu Jun 16 3:51 AM, 2005
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Hi Dina,

I think that with X-linking further thinning is stopped (as far as we know)...and its the thinning which is the problem in kc....

You see my left eye is the weak eye and correction with glasses in not brilliant...the right eye with glasses is fine.

As you very well know, With kids I think both eyes should be screened at a younger age...in that if both eyes are ok....as i think the critical age for the brain to develop for the vision we see is i think betwwen 6 and 7 years old...so if you can't see during that time...even if correction to that eye can be sorted out at a later date...the brain will not understand what it is seeing (because it does not know what vision is...) and switch off to that eye...

Now i don't know if that happening at that critical time develops lasy eye...there may be other reasons as well...but i was told by a eye specialist that they think that there is an over lap in lasy eye and kc...as kc causes the other at that critical age...

More so, I think, may be any visiual trouble at that age causes the eye to become lasy at that critical age depending what the visiual trouble is......

I don't know if this is right or not....and i hope it has come across in the right way!

I think kc is more common than previuosly thought (check out the topic of the same name)....also kc is often under-diagnosed or mis-diagnosed as some thing else (for example...Lasy eye?...with out checking for kc as the cause of it?...but just putting the label of lasy eye on it or astigimitism!)

I remember the eye specilist saying that...kc, lasy eye and some types of astigimitism should be grouped together as there is much other lap...

All in all a strenghened cornea is what is needed in kc...which X-Linking does....(unlike Intacs which comes to mind which Prof. Lombardi showed me how it further effects the thinning of the cornea as intacs stretches the cornea to flatten it...which is not what is needed in a corneal thinning disorder?!?!?) Sure if you can get good correction...so be it...

About the soft lenese...you are lucky as there is much more now than ever before....you may have to go further but i think you should have some joy there....and its not just what you know...its who you know as well...so try to find someone you can work with...

Traditional Kc treatments...for me has gone past its "sell by date"...and its been like that ever since the second world war or more when other condtions have moved on....

I think the incidence of kc is rising and its more common than people think...but i think no one has put it all together and looked at it closely as it deserves to be...

Anyway catch you later Dina...and thanks for sharing!



-- Edited by QuintriX at 13:10, 2005-06-16

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