Keratoconus and Cornea Transplants

Update -- March 2013

Wow, it's been six years since the last time I updated these pages. Unfortunately, many of the links below have gone dead, but here is some updated information.

First, I was asked to be a guest on the Huffington Post Live streaming program on March 13. Here's a link to that interview.

The National Keratoconus Foundation continues to be a great resource, and I strongly recommend you visit their website. Or, you can contact them as follows:

National Keratoconus Foundation
The Discovery Eye Foundation
6222 Wilshire Blvd. Suite 260
Los Angeles, CA 90048
800 521-2524 ~ 310-623-4466 310-623-1837 Fax
info@nkcf.org

The vision simulator I link to below is gone, but here is a similar page: Vision Simulators for Eye Conditions.

Finally, my own situation has developed since 2007. In 2008, I had surgery for glaucoma, and that procedure led to a cataract developing very rapidly (literally over a weekend) in my left eye. I had a successful cataract extraction and intraocular implant procedure, but that procedure in turn caused my cornea graft to fail due to loss of cells in the Descemet's Membrane on the rear surface of the cornea. Later in 2008, I had a new type of partial cornea transplant called a DSEK that replaced the membrane and resulted in a return to good corrected vision. The DSEK is a much less invasive procedure than the traditional "cookie cutter" transplant and has a much faster recovery time.

Now, as of March, 2013, I am having some issues with my right eye and as I write this I am scheduled for a cataract procedure in a couple of weeks. There is some concern about whether the now-17-year-old graft will survive the procedure, but if it doesn't, a DSEK should resolve the problem in this eye as well.


Sorry, but these pages haven't been updated in some time...

It's hard to believe, but it's now (January, 2007) more than 10 years since my first corneal transplant. With the exception of developing a significant case of glaucoma, which may or may not have anything to do with keratoconus or the transplants, I am doing fine and have corrected vision close to 20/20. The transplants seem to be in great shape.

I haven't been actively involved in the KC mailing list for several years now, and haven't spent much time updating these pages; I suspect that many of the links below are now broken. Still, I hope that this site provides useful information for anyone with KC or contemplating a corneal transplant. I have not had a single day (or minute!) of regret that I had my transplants; they made an unbelievable improvement in my life.


Introduction

I have an eye condition called keratoconus. It's a disease in which the cornea (the outer surface of the eye in front of the pupil) becomes cone-shaped rather than spherical, and this results in extreme astigmatism. Glasses can't correct this vision problem, but hard contact lenses often can. Unfortunately, the distortion of the cornea makes it very difficult to fit contacts comfortably for a keratoconic -- my eye doctor described it as "trying to balance a saucer on the end of a football."

Ultimately, the cornea may suffer scarring which results in vision loss that can't be corrected by contacts. At that point, the next step is to replace the damaged cornea with a new one through cornea transplant surgery. This is only necessary for about 10 percent of keratoconics, but I'm one of them. There's much more about that a bit further down this page...

The purpose of this web site is to provide information and resources to those who have keratoconus, and particularly those who have had, or are considering, a cornea transplant.

No simulation can show exactly what someone with KC sees, but this isn't a bad attempt. www.surgicaleyes.com has a nifty Visual Effects Simulator which, though it's not KC specific, can show some of the effects of KC.

For basic information about Keratoconus, the National Keratoconus Foundation has a good discussion of all the aspects of keratoconus in its Frequently Asked Questions About Keratoconus.

A relatively new organization with good general information about keratoconus is the Center for Keratoconus.

The NKCF has recently taken over management of an email list for KC patients that, in my opinion, is one of the most important resources available to anyone dealing with KC. Here is Information about the KC-Link Mailing List.

This article from medhelp.org is a brief, but informative, introduction to keratoconus.

There are several more links to KC sites further down in this page.

Keratoconus and Cornea Transplant Experiences and Diaries

I had a cornea transplant on October 2, 1996, and I've kept a diary of my experience. Although in the first weeks I had some discomfort and difficulties, the bottom line is that the operation was an unqualified success. I have very close to 20/20 corrected vision in the eye, and I can wear a soft contact lens or glasses for the first time in 20 years.

Click here to view my diary (last update 2 Dec 97).

On December 3, 1997, I had a tranplant in my other (left) eye. I'm happy to say that, despite a few difficulties along the way, the second transplant was also a complete success. I now have vision in both eyes correctable with contact lenses to nearly 20/20 (I'm still very nearsighted and blind as a bat without correction), and I can see well enough with glasses to get around, and even drive if I have to. Here is Transplant II: The Sequel, my diary of the second transplant (updated Sunday, 16-Jan-2005 19:20:34 EST).

I recently had maps of the corneas made of both my eyes to aid my doctor in contact lens fitting. If you're interested, here are scanned images of those corneal maps. If nothing else, they're pretty to look at...

Sid Sklar was the first persion to successfully receive a cornea transplant, on September 17, 1941. Sid is on the web at http://sklarnet.com/transplants/index.shtml and his is a story you should check out.

Paul Colley may have been the first person to put a transplant diary up on the web, in early 1996. However, his web pages seem to be gone. Anyone know if it's still on the web? If so, Please let me know.

Here's a great newspaper article about Magan Rasch, a high school basketball player who has KC and had a transplant in December, 1996.

Frances Talbott-White, who had a transplant on December 19, 1996, has written a chronicle of her experience. You can read it by clicking here.

Actor Mandy Patinkin has keratoconus, and had a transplant on May 21, 1997. Here's a press release about his transplant, urging folks to become organ donors.

Here's Rachelle N.'s transplant diary. She had a transplant on November 12, 1997.

Here's another page with good links and a transplant diary, this time from Dave Dwyer.

Another diary comes from Kevin O'Brien.

And, here's one from Julia Ziobro.

Hank Wirtz has an excellent transplant diary with photos of the procedure (not for the squeamish!).

Scott MacDonald's site at www.cornealtransplant.com offers his transplant diary as well as lots of other very useful information.

Keratoconus Resources

There are some good sources of information about Keratoconus (often abbreviated as "KC") on the web. It's worth repeating that National Keratoconus Foundation is a good place to start. And, it's also worth repeating that the KC-Link Mailing List run by the NKCF should be regular reading for anyone dealing with KC.

I've found several sites that have useful information on cornea transplants. One of the most detailed is the IEN -- International Eye Network in Japan.

Another site is The Hawaii Lions Eyebank and Makana Foundation.

Here's a description of keratoconus from the Harvard Medical School.

And, here's a very detailed (full of medical terminology) description of keratoconus from Pacific University and Optometry Today.

There's also a site at Indiana University with lots of material, but the information there about KC causation states some things as facts that seem to be hotly debated.

Here's some information on cornea transplants from the Cornea-Genetic Eye Medical Clinic at Cedars-Sinai Medial Center in Los Angeles.

The USC Doheny Medical Center has some interesting information on why corneal transplants are so successful compared to other transplants.

Here's the first KC and transplant site in French, put together by Ann de Fonvillars. I wish I could read it, because it appears to be jammed with detail, including some interesting illustrations and photographs that capture a bit of how keratoconics see the world.

And, here's a KC Site in German.

Here's a web site with some information on KeraForm, a proposed new treatment for keratoconus. I have no idea whether it will work or not, but it's certainly worth keeping an eye on.