post-transplant dry eye lady tries big 'ole scleral type lenses

[Andrea3]

I am in the process of being fitted for RGP lenses!
I'm 33. I had cornea transplants for kerataconus 12 years ago. My corneas are irregular and I deal with dry eye--abrasions, erosions, filaments, and photosensitivity. I call it, "carpet burn of the eye." I love my kids, but being pregnant and/or nursing from July 04 to October 07 probably didn't help the 'ole dry eye, either....
So, with vision becoming less clear (double vision, trouble reading, not really driving much anymore) I heard about these big contact lenses on this website. I really don't know exactly what to call them--are they scleral or mini-scleral or WHAT?? I think mine are more of the mini fruit platter type than the giant fruit bowl kind...
I went to Dallas to see Dr. G on Monday. He looked at my eyes through several tests. On Tuesday, he gave me a specially-made-for-me 14 mm RGP (CORRECTION--THEY ARE 15MM) lens made from Boston XO material. (I am right? How would I know? I was so excited about being able to see, I don't think I have remembered all the details well) Anyway, by noon on Tuesday I could see 20/20. Isn't that amazing? They weren't the most comfortable things in the world, but this excited gal wore them for the rest of the day. (By the way, that's TOO long.)
Day Wed--Tried another set--they felt a little better. But, wow, I could even read some of those letters on the 20/15 line. What an exciting experience. Again, I got a little overzealous and wore them too long. AHHHHH!
Day Thur--Third set of lenses--not the best fit, though I could still see great. I decided not to wear lenses that day and give my eyes a break. Man, I felt discouraged...my feelings were on my sleeve. I've had so much disappointment in this area of sight, that it felt tempting to give in and say one more time that we couldn't find a solution for me. It's a challenge, but Dr. G ordered another set. This whole fitting process is a roller coaster. I should remember this from having transplants--THAT TOO, is a major roller coaster. The thing that got me out of the dumps was having good words from friends, family, and my Bible.
Day Fri--This set felt the best yet--and they felt much, much better esp after he put in punctal plugs in the lower in one eye and two plugs in the right. It made me have just the right amount of tears for wearing contacts--a little TOO much tearing when I don't have the contacts in. I am going to wait it out and learn to work with this situation. It's still better than putting in eyedrops every 20 minutes. I've had plugs several times over the decade--this time they actually feel like they are doing something to improve the feel of my eyes. I don't know what accounts for that, but I am grateful--and hey, I'm sitting at the computer typing away! OK, so I wore the contacts on Friday for a REASONABLE 4 hours and took them OUT. These lenses are good enough to wear for short periods, but not as comfy as I really need them--but my week in Dallas is UP. So, off to home I go, and Dr. G is going to make another right lens for me in the 16mm range, mail it to Little ROck, and I'll work with someone here to find a good fit. I still haven't tried on a lens with plasma treatment and I am eager to see what that experience affords.
Day Saturday--LOVED coming home to my family!!!!!!!!!!!!! I waited until 2:00 to put in my "good" eyes--because, well, having 4 hours of great vision in the morning and then going back to yuck is SO HARD. The way I dealt with it today was to wait until afternoon to put them in--and I only put the left one in--I wore it from 2 to 6, then I put the right one in at 6 and I am wearing it now. Let me just say, one good eye is definitely weird, but things in mid range are OK--definitely won't be driving with just one! But, anyway, I will get a good chunk of day with beautiful vision--and without abusing my eyes. For today, I feel pretty good and I am ready for an adventure tomorrow. Maybe I'll put them BOTH in at the same time and drive somewhere!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!

[Rojzen]

very exciting!

This is a wondrous set of developments for you . . . Please keep updating here. . .Once you are in lenses that work just right for you, there will be lots of good input available here from people who flourish in their sclerals, and have found ways to maximize use and comfort. . .Those of us who are not in sclerals may still have ideas about cornea care. . .

Have a great Sunday!

[Andrea3]

update: post-transplant lady gets scleral lens

Today is the seventh day since I first tried on lenses. Today was the best day yet. I wore each contact for about 5 hours--I had the left in first, then both together, then I took the left out and wore the right one. So, I managed to cover from about 9:45 am to 7pm with GREAT eyesight. I used Aquify drops when needed throughout the day. I put in an extra drop and waited a bit before I removed the lenses--that seemed to help make the removal process a little less easier. Perhaps the extra fluid reduced the suction of the lens somewhat--I can't say for sure scientifically, but it did appear to help. Very little redness following. The lenses don't feel all that comfy when I first put them in, but seem to be less "noticeable" as time goes on. I assume that means I am still getting used to having plastic in my eye.
The corner of my right eye was still irritated--apparently the lower punctal plug sticks up just a bit. The doctor I saw here in Little Rock suggested that my eye may desensitize to that feeling with just a bit more time. As the day went on, it bothered me less. My doctor here in Little Rock agreed to work with Dr. Gemoules in Dallas to check on the fit of the next lens Dr. G is making for me. That will be another little interesting adventure.
All in all, today was a great day.

[Rojzen]

wow! sounds so promising!

Thank you so much for this truly cheering news! Things are clearly moving in the right direction. . .Your clear sense of what is happening, moreover, is going to be a great help to the docs who are fine-tuning things. . .I so hope tomorrow is as good as today was, and that even if there are the inevitable ups and downs, you soon reach a place of steady comfort with the great new vision. . .

[Andrea3]

update on post kerataconus/transplant lady with sclerals

Today is day number 8 in scleral lenses.
I put both lenses in AT THE SAME TIME today so that I could drive to the grocery store--would have been fun to drive had I not been so light sensitive. I am wondering if I am "pushing" it a bit with my wearing time. Otherwise, my eyes aren't red, and the irritation from the punctal plug has subsided. My eyes feel a little "bothered" but I have no idea how to gauge the seriousness of this because I have been living with eye pain for years. (These lenses that I currently have are a stand-in pair while I am waiting for the next set of lenses to be created.) The adjustment back to glasses is wacky! But here's the really great news about going back to glasses--the floors, sink, tub, kitchen all look clean again..........
Things I learned today:
1) I should have factored in the cost of Molly Maids and a facial into my global scleral lens fitting fee. I can now see every speck of dirt and yuck that my house has been accumulating!!!!!! This is hilarious to me--I've always thought my house was easy and quick to clean--NOPE, I JUST COULDN'T SEE THE DIRT! Let's not even talk about what I found on my face........
2) If I fill up the lens to the brim with the saline, it makes it easier for me to "feel" that I am correctly inserting the lens. The liquid bubbles up as I place it to my eye and I can feel that I have it in the correct spot. When I use less saline, I tend to bump the edge of the contact on my eye. I'm still a little fearful about getting it in wrong after the disaster on Sunday, So, I like the overfill trick.

[Andrea3]

more info--love to hear someone explain diopters and bitoric for me

I learned a quick fact about my eyes and lenses--I needed a correction of more than 6 diopters for astigmatism. The lenses Dr. Gemoules fit for me are bitoric. (Somebody, quick get the dictionary.......) What that means to me in practical terms is that I have incredibly high astigmatism and the lenses enable me to see better than 20/20.

[Lucy]

Andrea, it sounds like you are doing very well. I hope it continues!
Bitorics? Who cares as long as it's what you need. It's probably a more sophisticated form of toric lens (which I have heard of). Lucy

[lilahp]

doc in LR

Hi, there!

Great info about your experiences! Would you mind my asking who your doctor is in Little Rock? I live in Arkansas, too! And you may have mentioned this, but if so, I missed it (eyes hurting!) : was it covered at least partially by insurance? If you don't mind my asking, what was the cost, either way?

I have a doctor's appointment in LR next week and would just LOVE to discuss this with him!

Thanks so much for your inspirational story! Hope today is continuing your successful journey!

[Andrea3]

bitoric lens

Andrea, it sounds like you are doing very well. I hope it continues!
Bitorics? Who cares as long as it's what you need. It's probably a more sophisticated form of toric lens (which I have heard of). Lucy

Hi Lucy!
Yes, I am smiling because I am so grateful to see crystal clear and it matters not how the plastic is shaped! The little scientist in me, however, finds all these details very interesting.
Actually, the lenses I have ARE truly bitoric--and that's straight from the doctor, himself. Perhaps Dr. Gemoules would be able to share more technical specifications with us as to how this lens functions for a patient who requires high diopter correction--like over 6 diopters for my eyes.
I did also find this info on the National Kerataconus Foundation's website to help me understand diopters and astigmatism a bit more. Here is a quote from their FAQ page:
"In simple terms the diopter (D) represents the reciprocal of the focal distance in meters. Astigmatism between 0.25 and 2.00 D of is not unusual. Between 2.25 and 3.75 is less common but still seen. Much above that in a "normal" person is unusual. Keratoconus and post-transplant patients can have 10 D or even more of astigmatism."

[Andrea3]

doctor in LR

Hi, there!

Great info about your experiences! Would you mind my asking who your doctor is in Little Rock? I live in Arkansas, too! And you may have mentioned this, but if so, I missed it (eyes hurting!) : was it covered at least partially by insurance? If you don't mind my asking, what was the cost, either way?

I have a doctor's appointment in LR next week and would just LOVE to discuss this with him!

Thanks so much for your inspirational story! Hope today is continuing your successful journey!

HI lilahp!
I do not know of someone in Little Rock who is fitting scleral lenses. I thus decided to see Dr. Gemoules in Coppell, TX. He is a contact lens specialist. As of my visit, the global fee for fitting these RGP scleral lenses is $2500. I am not anticipating insurance coverage of this cost, although I will do everything I can to appeal. You can look up his name on the web and find out more specific info. I traveled there for a week to begin the process of fitting the lenses. We tried 4 different pairs and I am awaiting the 5th. My family optometrist here in LR will continue to help me now that I am back home in Little Rock. He doesn't have the experience with these specialty lenses, but was willing to work on it with me. I only had an initial meeting with him, so I don't yet know how that process will go.
Blessings,
Andrea

[Andrea3]

man in the moon

Well, I received the next "try-this-out" lens last week. It was 16mm. Not great. I was so very down.
Since then, I've had a lot of support from a couple close friends, some time to settle down and get centered on where I know my real hope comes from.
Man, I was not prepared for how emotional I would be about this process/journey.
OK--so I'll bypass all the nitty gritty details about how I HATE getting the contacts in wrong and stuck in the corner of my eye. About how I have actually had 4 days of wearing the lenses for four HOURS. (OK THAT"S GREAT), and how DR. G is still working to make me yet another lens.
What I really want to say is, that tonight, I got to see the moon. It's a beautiful full moon. Even as a kid I wondered why people talked about the "man in the moon." It just looked like a roundish light to me--for my whole life. But tonight I saw it--crystal cut, perfect sphere, with shades and mysteries. Tonight I saw the moon--for the first time. I wonder what I'll see tomorrow.

[lilahp]

talked to doc about sclerals - followup

Hello!

As I mentioned, I had an appointment with my doctor in LR last week and talked to him about sclerals. He was not familiar with the concept, but said he would like to learn more. He also has a doctor friend at UAMS who is a dry eye specialist (he said she was in on the original lab studies for Restasis).

I would like to provide him with your doctor's name and contact info in Texas (I will look it up), plus any other information you would like to share. I also told him about the Boston Foundation for Sight, as that would also be a good resource for him. I'm so glad that you posted! Perhaps we can all help spread the word! Please let me know what you think, and any tips on what you would like for me to say to him, too, if you want.

(I've also heard from another e-mail that sometimes this can be covered by insurance, and if you would like details on that, let me know.)

Thanks again!

[Andrea3]

help in AR

HI!

That's really great that your doctor was willing to learn more about sclerals!!!!!!!!!!!! I'll send you a private message..
Andrea

[Andrea3]

boston simplus

Well, I've come to the conclusion that boston simplus doesn't like me! man, I do so much better if I wash every drop of that stuff off the lens before I put it in.
I'm not wearing the lenses verymuch, just a few hours every other day or so. I am waiting on another trial lens to come from Dr. G--
I haven't given up hope.

[Rebecca Petris]

Andrea,

Many people find that cleaners & solutions make a huge difference to their lens comfort. I use Lobob Extra Strength cleaner and I soak my lenses in hydrogen peroxide. For those with plasma-treated lenses, Lobob or Miraflow are the only cleaners they're supposed to use but even for those without, many people prefer them. If your doc is OK with it you might want to try out one of these. I generally had problems even if I very carefully washed off the Boston solutions.

Only difficulty is they are hard to find. Miraflow is no longer stocked in drugstores at all and Lobob always was kind of hard to come by locally. You can get both online - Miraflow is at drugstore.com and Lobob is at ocusoft.com. (Both are also in the dry eye shop here but may be cheaper elsewhere because we can't get them in large volume.)