I am a 54-year old Keratoconus (KC) sufferer living in beautiful Lexington, KY.
I have a lovely wife and two daughters. These three are the center of my life.
I own and operate a web marketing consultancy called BuzzMaven in downtown Lexington providing online marketing programs for business. My hobbies include mountain biking and metal detecting for old coins.
There were two less common things that were true for my case:
- My Keratoconus was diagnosed in my early 30s. Most of the time it’s found much earlier.
- My Keratoconus is in one eye only (unilateral) (so far.) This is a major blessing.
Here’s my timeline.
Santa Clara, CA
- 1994: Age 28. Vision in left eye began to worsen. Ophthalmologist did not check for KC.
- 1996: Continued vision decrease, referred to specialist.
- 1996: KC diagnosed via corneal topography, soft lens wear continued. Age 30.
- 1998: KC slow progression – soft lenses still working but vision decreasing.
Lexington, KY
- 2002: Difficulty increased with soft lenses. Headaches, lots of blinking trying to “clear up” my vision.
- 2003: Small, rigid Permeable lenses fitted for left eye – tolerance was poor. I think this lens scarred my cornea, and represents a dark moment in my KC history.
- 2003: Piggyback strategy deployed. Many hard lenses lost to small breezes and fast movements.
- 2003: Intense pain occasionally – “Needle” feeling. Determined to be corneal abrasions from Soft Lens.
- 2004: New soft KC lens from Lens Dynamics fitted. Excellent comfort. This lens has no vault – but a thicker region in center for optics.
- 2008: Soft KC lens became intolerable due to Corneal Contact (no vaulting.) Repeated painful abrasions, especially in morning.
- 2008: Nightime comfort decreased. Lens lubricants no longer prevented pain. Sleep disruption and intense morning pain.
- 2009: Fitted for semi-scleral RGP lens – took 5 tries to find one that worked. First few had 6 hour wear-time. Finally reached 11 hour wear time.
- 2009: Discomfort is continuous, scleral lenses were re-fitted. Nighttime and morning pain affecting my life.
- 2010: Ophthalmologist describes the severity of my scarring – tells me that intacs or implantable solutions were not going to work.
Lexington, KY / Cincinnati, OH / Northern KY
- Summer 2010: Met with three different corneal surgeons: two in Lexington, one in Cincinnati area. Most impressed by Dr. Holland.
- 2011: Explored corneal transplant option. Dr. Holland suggested DALK is possible.
- 2/3/2011: Started this site on the day of my final transplant consultation with Dr. Holland
- 2/4/2011: Decided to proceed with DALK transplant on March 9th, 2011.
- Go here to pickup the timeline.
Scott,
Thanks for dropping me line over at my site the other day (DALK Surgery Diary). I just wanted you to know that I moved the DALK Diary to ksblink.blogspot.com.
Nice to see you are going to see Dr. Holland. I hope everything works out. Just saw him again yesterday and updated my blog.
Cool.. I’ll update the link.
By the way… sometime we should get together… I’ll buy you a beer or coffee. Sounds like we have some things in common.
Hi Scott,
Good luck with your transplant! May I ask you one thing – what caused your cornea scarring and prevented you from having Intacs? Hard or soft contacts … I’m having KC too and need some help and info … Thank you! And what is the difference between scarring and abrasion – maybe abrasion is temporary?
As I understand it, Keratoconic scarring is not like an abrasion or scrape. It’s more like stretch mark that penetrates the stroma and distort light in such complex and random ways that no corrective lens can fully compensate for it (including intacts and hard lenses.) Scarring of this type sometimes reaches from the Bowman’s layer all the way to (sometimes) the Decemet’s layer. If it reaches the Decemet’s layer, it can prevent a DALK procedure and lead to the requirement for a PK procedure.
A Corneal abrasion is usually temporary – sometimes caused by trauma (such as from sports) or even dry-eye (binding of epithelial layer to the eyelid during the night.) I experienced the latter a couple of times and it was not fun! My doctor prescribed an antibiotic and steroid drop to help it heal. These recurrent abrasions were one of my major reasons for having my transplant.
“2003: Small, rigid Permeable lenses fitted for left eye – tolerance was poor. I think this lens scarred my cornea, and represents a dark moment in my KC history.”
– was this the event that you think scarred your cornea? I’m thinking of using special Keratoconus soft lenses but I’m afraid of scarring …..
Yes, I received an abrasion from it more than a scar. Thanks for pointing it out.
An experienced fitter can address these issues – don’t avoid lenses just for fear of this. Soft KC lenses are wonderful if you can fit. I wore them a long time. The abrasions didn’t happen with these lenses… it happened with the hard lens that was poorly fit.
Scott – I stumbled across your blog while researching my upcoming (IEK) corneal transplant. My k/c is bilateral, and I had the right eye transplanted back in 1988 when I was in my 20s. The transplant is hanging on, still vialble, but as I keep on having rejection episodes and my left eye in lens-intolerent, I’m undergoing the transplant in my left eye on 19MAY.
I’ve been a bit apprehensive about the whole surgical process. While I have undergone this process once before, back in those days it was done in the hospital, and you were knocked out for the duration of the surgery. (Bliss!)
I can’t say that I’m still not a bit apprehensive, but reading your blog has truly put me in a better space, mentally-speaking. Thanks for sharing the experience – and helping to quash some anxiety in the process.
Glad it helped!!!
If only there were more clever poelpe like you!
I am having DALK Oct. 6th. Thanks so much for writing all of this. It has been very helpful. I am in that stage where I am a little scared and excited. I just can not wait to see.
Thanks Buffy Epley Lexington NC
You’re welcome. Good luck and don’t worry if first few days are rough… It gets better fast. I’m very glad I did it.
Scott, your blog has been such a help. I have spent a lot of time reading and re-reading it. The thought of a corneal transplant has scarred me to death. When I began researching and discovered the DALK, I was very excited. I know it may not work and the full transplant may have to be done, but boy it seems like such a better option. My next task was to find someone, preferably close, who has done and continues to do high volume. It seems like Dr Holland may be the one. I am sure I will have many questions for you as I proceed through the process….Thansk!
I have just been referred to Dr Holland. I look forward to hearing how your DALK procedure goes. I am very nervous, but know it needs to be done.
Maria – I had my procedure back in March. It went great – life changing. You’re in great hands. You might want to spend some time reading my blog – I have a TON of information here. Of course, I’m not a doctor – Dr. Holland is who ultimate advice should come from.
Just wondering if things are going ok? If you’re interested, I’d love to have you guest post on my site sometime.
Thanks for the latest update Scott. I had my DALK on 8-31 w/ Dr. Francis Price in Indy. Just had my one month checkup and everything looks great. For those who are nervous about it and wonder how it will be- it will be exactly as Scott describes it, at least it was for me. It’s comforting to know that you are not blazing a trail here. Heck, it was comforting to find out years ago that I wasn’t the only KC sufferer in the world!
Jeff, do you have interest in guest posting occasionally about your recovery?
Scott,
My appointment with Dr Holland is tomorrow. I’m a little nervous, but have gone back through the list of questions you posted. Any additional thoughts before I go? How is your progress coming?
Wow… I’ll be there tomorrow also for my follow up! (10:15 appt)
Anyway, my progress has been good – stable – no exceptional changes – no rejection – no pain. I think that is all good. I suspect my vision is unchanged. I’ll be reporting to this blog again after the appointment with news.
You’re in good hands with Dr. Holland and his staff. It’s a big decision, and not risk-free. But once you’ve exhausted other options, DALK/PK are a logical next step. I think that it’s essential that you realize that remaining a vigilant, compliant patient is essential to reducing risks. You cannot eliminate risks. Just like you cannot guarantee you’ll be in a car accident on the way to the appointment. Life’s about negotiating cost/benefit questions. This is just one more to consider.
The reduction in pain has changed my life. I’m happier, more active, more social, etc. And you know what? EVEN IF the surgery had been a failure and I’d lost vision in my left eye completely, I’d probably still be happier than dealing with the stabbing, relentless pain of KC. Your brain is amazing at adapting to lower vision.
Maria – how did things go?
Scott,
Had my Dalk Wednesday with Dr Holland.Everything went well and pretty much as you described. Home now just relaxing. Pain isn’t too bad, eye still a little swollen and blood shot…obviously to be expected. Will see Dr Holland again next week.
My appointment with Dr Holland went extremely well. He and his staff we wonderful. I am on the schedule for Dec 14. I suppose now its just a waiting game. My cornea is VERY thin–he will attempt a DALK, I surely hope it works but if not the full PK is not a bad option.I had mentioned you to him and told him how helpful your diary and blog has been. It is reassuring to hear how someones experience was and provides some input as to what to expect. I will keep you updated once I have the surgery.
I just found your blog (was googling for images to show friends). I’m getting corneal transplant on Apr 3 ’12 & I keep waking up in the middle of the night in dread. I got KC in both eyes, so my reading is slow (sclera lens in good eye). But I read enough to know I’m going to read it all.
Your telling me things I’ve never heard before & are reassuring.
-Did the stitches scratch or are they soft?
-I’m on the internet right now reading up in middle of night for comfort & my eyes are crusty upon awaking & & so itchy & I unconsciously wipe the lids off & get angry at myself. Did itching & pain from light go down after transplant?
[removed email addresses to help you avoid spam.
Thank you for doing this.
You can’t really feel the stitches. Occasionally they feel a bit like an eyelash, but that is very rare. After stitches removed (a few per visit) you may be slightly sore, but a bit of tylenol takes care of it.
Itching was on and off. I was never really sensitive to light except for first few days after surgery. You’ll wear a shield after surgery – for as long as you want. If you think you’ll wipe the eye, you can just keep wearing it.
Sorry, the name on Google+ is wrong. It’s Pam Burrows
Things have been rough. I ended up having the whole Cornea Transplant. I was able to return to work after about 2 weeks. The 1st 2 days I was in pain. I felt like they should have gave me something for pain. But it got more Tolerable as weeks went on. I am actually having Intacs surgery this Friday in my other eye and they are going to take my stitches out of the right also. I can’t wait. They are a pain. My vision has improved but I am still going to have to wear contacts. That is fine with me. i should be able to wear normal ones. So hopefully another month we can get those contacts in and I can really see. Wish me luck.
Buffy Epley
Me too on the contacts. I agree the first few days are definitely rough. They are taking ALL of your stitches out? That’s different than the way mine are coming out bit by bit. Good luck to you and stay in touch.
Also I just wanted to say the surgery was a breeze. No pain what so ever. I was at chic fillet a hour after. But around 9pm that night that is when the pain started and I was very uncomfortable for about a day or 2. But it got alot better. Another thing that has bother me is the eye drops seem to crust up on the stitches and then the stitches seem to bother me more. I forgot to say this in my earlier email. I will post again on Monday after I have my intacs Friday.
They are not taking all of my stitches out. Not sure how many. i have a running sucture so I am not sure how they will do this. But my surgery was last Oct so I am ready to get some of these things out. LOL!!
I wrote on the other site to tell you what a great site this is that you created. I am t minus 5 days to my surgery! I did a ton of research and this page was very helpful. Thanks so much! P.S. put up a pic of the healed eye so we can see it one year out!
What other site?
The timeline site
It’s all on the same site – just a different section. thanks!
Update I am going into my 3rd month after my transplant. No issues, vision fluctuates a little bit day to day. I start getting sutures removed November 9th woohoo! Just wanted to say again, what a great site this is!
Awesome!!!! I would welcome some guest posts from others if you’d like to add your own thoughts. Feel free to wait until a year’s passed if you’d like.
Scott,
Thank you so much for your diary. I am 41 and have 20/600 in my right eye, and can’t wear contacts to correct. Reading your diary was just what I needed to understand the transplant process and recovery. Thank you for taking the time.
You’re very welcome. I wish you the best of luck in your decision, and if you elect, your procedure.
Scott, I just moved to Lexington and have Keratoconus. It has not significantly changed since discovered about 14 years ago at the age of 48. I’m unusual that I do best in glasses rather than contacts. I need an exam and not expecting anything other than a prescription change. Any suggestions on who I might go see…..or not see? A private email response might be best if talking specific Drs in the area. Tina Nauman
Sorry to have just now seen your comment. I’m fine with sharing my opinions of eye doctors in the area publicly. First, I am regularly impressed with the staff at Dr. Koffler’s office on Eagle Creek, but I just chose Dr. Holland because of the number of DALK surgeries he had done. I got the impression from my visits with Dr. Koffler that he would have preferred a full depth transplant, meaning I’d likely have to have a re-graft in 20-25 years. So right now, Dr. Holland is my primary surgeon and I’ve been to all of my follow ups with him. When I have an immediate issue, Dr. Koffler’s been great. And I have Dr. Koffler’s office make all of my special contacts. It may turn out that Dr. Koffler was correct and the DALK was the wrong decision…. but so far, so good. He’s recently helped me with a broken stitch and inspecting an abrasion where I didn’t feel the need to run to Cincy. Plus, Dr. Koffler’s office has always been easy to get an appointment at.
I would encourage you to consider a graft, especially if you have KC pain. Good luck!
Scott, thank you. I will make an appointment with Dr. Koffler. I have no pain and have had no vision change in many years. Vision is quite good. I can live with what I have and hope it never changes. Good luck to you and I hope you find that you did make the right decision. Tina
I have had an appointment or two with Dr. Wortz as well at Koffler vision… I really liked him also.
On Mon, Aug 12, 2013 at 1:19 PM, Keratoconus and my DALK Corneal Transplant
Docs pulled my back corneal to the front from a knife accident so I can see bec my front was damage from the knife . Yrs later my left eye is very poor that value vision doc say that can’t correct my lens so I can see clear not blurry .. I heard there’s a program out there that will pay for my eye corneal transplant .<– is this true?
Very sorry about your accident. I am not aware of any such program because I’ve never looked into it. I wish I had more information but I do not. Best luck to you.