My Keratoconus Experience (pt. 2)

This video is about My Keratoconus Experience (pt. 2)
You can watch more of my Keratoconus journey here:
Day of Surgery - • Day of Corneal Transpl...
2 Days After Transplant- • Corneal Transplant 2 D...
4 Days After Transplant- • Corneal Transplant Day 4
Summary of 1 Week Follow Up- • Summary of week 1 foll...

[@nebba200355]

You're awesome for taking your time and sharing your experience. I'm now 46 years old and have lived with kc since I was 14 years old.

[@suzawilo]

What is your situation at the moment? I was just diagnosed and am freaking out. Had glasses most of my life and am supposed to be fitted with hard lenses soon. Had problems earlier with "regular" lenses so not sure how my condition will progress..

[@Shon9tilR]

You don’t have to worry about loosing your identity. We’re stuck with it for life. Transplants are successful but they won’t last forever . I can’t wait to get my freedom back.

[@strangevideos4434]

I'm so happy for you things are going well can't wait to see how u look

[@abmong]

You wouldn't lose your identity of having KT. The corneal transplant can only improve your vision to a point (from what my doctors tells me), you'll only have 60% visual clarity max in that eye after. Your left eye will still be Keratoconic even after the cross-linking. Contact lenses can help, but it still wouldn't be 100% corrected vision. So whatever we do, we'll still have KT. That is until they figure out how to do whole eye transplants or make bionic eyes... I've read that there are other advances in ways to reshape the cornea, One using lasers to smooth out the cornea combined with CXL. The other one was using sound waves to smooth the cornea but that's still very experimental. I've lived with the diagnosis for about 5-6yrs now but the condition itself likely started way before I noticed or knew what it was. Growing up the vision in my left eye had always been slightly blurrier than the right, but it wasn't blurry enough to need glasses. With both eyes open I thought I had perfect vision... Never had to wear glasses or contacts lenses before. Even as the left eye began to deteriorate, it went unnoticed since the vision in my right eye was still good. I guess it was compensating for the left and my brain blocked out the distortions in the overall image I was seeing. Only when it had progressed much further and the brain couldn't block it out anymore that I began to see the ghosting distortions. As it progressed further, that turning into full blown double visions and now I've lost count the number of refracted copies that appears. It started affecting my right eye too about a year or so after the diagnosis. I was fitted with those hybrid lenses. they help but they not that comfortable and sometimes unbearable. I've just had CXL done on my right eye. Waiting to do the left one soon. Funny thing is when I stopped wearing the lenses for a few months to prepare, my left eye seemed to have gotten better on it's own! To the point where my right eye seem to be worse than the left... That's why I ended up getting the right one done first, even though the scan still shows the progression was worse in the left eye. (didn't want to do both eyes at the same time for pratical reasons). Looking to get sceral lenses after finishing the CXL and it's all heal. I heard they're more comfortable than the hybrid lenses. I'm into my art too. Did all the scholarship art student stuff. I was always more into drawing than painting though. Used to be able to draw near photo realistic drawings with 2B pencils and detailed character designs with the graphic tablet. I can still do it... but having the visually distortions and seeing more than doubles really messes with your head when trying to make precise lines... Screws up the workflow goes without saying. The thing I really hate. (don't know if it also affacts you) but not being able to see clearly has really affected my mental acuity. Like having a brain fog most the time. Not being able to focus visually for me is somehow linked to not being able to focus mentally... Only time I get clarilty (if at all) is when I close my eyes laying in bed before sleep. Anyway, hope you're doing well, all the best and all that. If I was to give one advise to someone living with KT. It would be to move to a city/country with good public transport links if you can. With our condition... Best to avoid driving if we can, especial driving at night.

[@reginah.1011]

thanks so much for sharing

[@oproduct5346]

Thanks 🙏🏼 I thought I was the only one with this . I just got diagnosed today , and I was feeling terrible.

[@kellymcewen2823]

I'm glad this can help you feel a little bit better :) I know the initial diagnosis can be hard. I wish you the best in your journey no matter which treatment option(s) you choose.

[@adrummingman]

Hi Kelly, thanks for this video. I have an appointment with a specialist in June and we'll discuss options for my eyes. Like you said in your first video - it's always good to hear how other people experienced treatment. I tried the hard lenses, but I couldn't really handle them. I am hoping that cross linking may be the way to go for me, as that seems to be the option that's not as scary as the other treatments. :D I'll watch your transplant videos next. Again, thanks for doing these!

[@kellymcewen2823]

+adrummingman I'm glad these videos can be of some help. I hope all goes well at your appointment with the specialist :) please keep me updated, I really enjoy hearing everyone's experience and how they coming along through the process.

[@raindropscallme]

you are deffinetly not the only one i felt exactly the same way...

[@sherazali6739]

I have same diseases for last 20years... whole life ruined...its like basically you are disabled person but people can't see that so they don't believe you😐

[@Matowix]

I was told corneal transplant didn't fix your vision. and what are the negatives to it ? they aren't keen to do a transplant if they can avoid it and there is still risk in losing your vision after the operation from what I heard ?

[@kellymcewen2823]

If your keratoconus isn't fairly advanced and your cornea hasn't deteriorated very much, doctors generally will not suggest a corneal transplant as there is still risk involved with it, albeit minimal with the medical technology available today. a corneal transplant will correct vision , but only to an extent. I will still require glasses because it does not correct for my nearsightedness. The main reason the transplant was my only option and has corrected for my vision was because my cornea was very thin and scarred, the scarring was a big factor in the status of my vision. if your cornea is still a fairly normal thickness crosslinking can help slow the progression of the disease, intacts can help shape your cornea so the shape doesn't impair your vision as much, and as someone also commented, a new procedure called keraflex is in clinical trials (but it involves getting crosslinking beforehand). the negative side of a corneal transplant is the risk of an infection or rejection. there are likely other risks associated with it. remember, i am not a doctor I merely speak on my own experiences, so i always would suggest to speak with your doctor about the treatment options specific to your needs and the benefits and risks associated with them. I hope this helps :)

[@Shon9tilR]

Matowix There is no cure to this. It’s in your cells. All these procedures, lens, glasses only help maintain keratoconus.

[@shreyasdixit1016]

hey kelly i too have keratoconus and my left eye got treated by cross linkage and my right eye is suspected for keratoconous... i use little bit of phone and pc does it effect my eyes??

[@kellymcewen2823]

+shreyas dixit I think generally straining your eyes to look at a screen for extended periods of time isn't the best for anyone's eyesight. however I don't believe using a screen from time to time is going to be detrimental to your vision. However, it is discouraged directly after receiving one of the treatment options for a few days. I'd have to look into it more to know it's direct impact on individuals with Keratoconus.

[@strangevideos4434]

Hello Kelly my name is Randy I have keratoconus just the same as you my right eye is totally gone my left eye not that advance just want to say I hope everything works out for u and your in my heart ...

[@kellymcewen2823]

+randy mohan Hello Randy, thank you so much! your comment means the world to me :) I had the transplant about a month ago and things have been going well. I have videos of the experience that i will be posting soon

[@joanaarg3613]

Did you have to wait a long time to get the donors transplant?

[@kellymcewen2823]

No, at the office where I had my transplant I believe I only had to wait a month. Corneas and other tissues aren't as demanded or scarce as other organs, so the waitlist isn't as long as other types of transplants.

[@lisaherridge7116]

Hi I also got keratoconus for me it my left eye that is worse.

[@REMYLEONEL]

how much are you paying for the transplant.?

[@kellymcewen2823]

im not sure of exactly how much mine is costing as my parents paying for it. however, without insurance corneal transplants can range from 13,000 to 28,000. I will talk about this more in my Q&A Response video which will be posted soon

[@REMYLEONEL]

OK, thanks

[@lisaherridge7116]

I had corneal cross linking in both of my eyes in 2012

[@kellymcewen2823]

I'd love to hear about your experience. Cross-linking is the next step for me in my left eye.

[@lisaherridge7116]

+Kelly McEwen I had a few complications like hazing a delayed healing but in the end it was worth it. I now got almost 20/30 vision with rgp contacts.

[@kellymcewen2823]

wow! thats amazing. thats good to hear! thank you for telling me about your experience :)

[@gsingh5617]

are rgp and scleral lenses the same

[@kellymcewen2823]

Gurdit Singh no, they are a bit different. RGP are hard lenses that are meant to sort of force your corneal into the right shape while they're on (thats my basic understanding of them) I believe they rest on the cornea itself. Scleral lenses rest on the sclera, which is the white part of your eye. Because of this they dome over the cornea instead of coming into contact with it, that is a major factor in what makes them more comfortable to me.

[@marinprodanov2284]

You are very beautiful.