Keratoconus – my story by Rhonda, USA

Rhonda’s story

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I’d like to share some of my recent events. I am from Massachusetts, USA. As a member of KeratoconusGB I have been posting my updates there, and now I am sharing my story with the wider world in the hope that it can helps fellow keratoconus folk.

 

If I had Keratoconus 25 years ago now they didn’t label it as such. Had people even heard of it back then? I don’t know. My current doctors feel I had it back then. I had 20/20 for the next 23 years.

I had RK surgery done 23 years ago. My vision.at the time went from 20/400 to 20/20. So I had keratoconus, and successful surgery of radial keratotomy done 23 years ago to correct it till it can no longer be corrected, but now mix with aging and here I am. Radial keratotomy was once one of the most frequently used surgical procedures to correct near-sightedness. However, since the development of more effective vision repair procedures, such as LASEK, LASIK and PRK, RK is rarely used today. Also it is not recommended for KC eyes!

My eyes are a mess, is the best way to describe them! My personal experience has been very complicated. I’m 49, found out I had Keratoconus again 4 years ago. I went from perfect vision to legally blind in one eye within 6 months.

Then life as I knew it ended and the KC ride began. No one else in my family has eye issues but me. I’ve been dealing with vision impairment for the past 4 years. The other eye is slightly better. It has not been an easy road, many personal losses and some very low emotional days. My family, friends and the KeratoconusGB group have helped immensely, along the way.

It’s always something. Some days minor issues other days over the top. My eyes are rarely comfortable for one reason or another. Some days I decide early on, how much do I care to see today, can I get by with nothing in my eyes, that’s when they feel their best naked!

I’m lucky to have a great team of Doctors. It didn’t start out that way though. Over time I came to realize who truly listened and cared. I’ve seen many corneal Doctors and gathered each ones opinions on my condition and treatment plan.

I am luckier than some

I’m a veteran and eventually decided to keep all vision care with the VA Health services. My care is free because of this, and I realize how lucky I am compared to many others.

Because of this I’ve been allowed to trial every lens out there just about. Some gave me clear vision but lens fogged up, or they rubbed on dry eye, or they felt like sand in my eyes. I’ve been told I should get use to the discomfort since I was able to have better vision, something is better than nothing, there’s nothing we can do for you etc. I’ve been told I will never drive again, and if I did I definitely wouldn’t be night driving, I will always need glasses and lenses on at the same time. I get dizzy and nauseated at times, especially on a bad vision days.

Dry eye

I suffer with multiple eye issues, one being serious dry eye. Dry eye is not only or always the outer surface. My eyes are dry internally also. I have been everywhere in Boston, MA top cornea doctors who are surgeons. My hypothyroidism plays a big part with my dry eye syndrome….a huge issue for me!

I will tell you my regime, this in no way means its correct treatment for you! I will share my Rx names, I’m in the USA, and so you might have the same available to you also under a different name. Google to find out. I am on Restasis drops two x a day (to increase tear production), Refresh drops every 30 minutes, Patanol drops for allergies twice daily, Genteal drops at bedtime

My cornea surgeon told me to take fish oil and flax seed to help with dry eye…..I honestly can’t tell if it’s doing anything but I continue it non the less. I take/eat flax seed, fish oil, & drink lots of water to keep your body hydrated overall. My Dr has me use single sterile vials of saline each time I’m putting in lenses, just to be extra careful. Plus I have punctual plugs in place.

If anyone benefits from my dry eye regime then I’m happy I shared my situation….we all learn from one another’s stories! Good luck to you!

Here’s a rundown of the last year of my keratoconus experience

May 2013

Several manufacture reps have all reviewed my case. They are in agreement to try Blanchard mini scleral lenses. I’m also trying out ClearKone tweaked once more and going to be fitted for UltraHealth lenses too. We can then play around with them and see if any work better than others.

August 2013

It’s all a blur

My doctors and I discussed blurring while I was in the Boston clinic. It happens with all the lenses we’ve trialled, RPG, ClearKone, scleral etc. None of the lenses are old. So far actually none have been compatible after a short wear time, and what I’ve been told is that my dry eye is so severe it affects all the lenses, scratchy, foggy due to lack of oxygen exchange. Next I’m trialling UltraHealth (geared for that issue). My lenses at different times also have suctioned onto the eye to tightly distorting my vision by changing the shape of my actual eye, also causing foggy conditioning. Rinsing, resetting drops etc. do not change the conditions. Once lenses are removed it takes my eyes at least one hour to go back to their “normal” state. At the moment I don’t have lenses to wear (because of my issues) I’m waiting on the Synergeyes UltraHealth ones to arrive and try them out.

I’ve been on Restasis x 2+ years, resetting drops, bedtime drops and I personally don’t notice a difference. Last visit to Boston they placed the tear duct plugs in to try and help out with the dryness. Can’t say I notice any difference with them in place, but I haven’t seen my doctor since they were put in to evaluate professionally.

I’m in a foggy world….

Vision Of Eyechart With Glasses
http://www.SeniorLiving.Org

It’s never ending. Well at least in my little world it’s never ending….this past week the corner of one eye, only at night is now seeing lightning strikes and a film move across my eye, but it’s clear….they said it could be a tear in my retina & vitreous gel or tear movement, but its noticed in the very early stage if so and we need to wait a little more to see.

I’ve given up on lenses at the moment, either they are the wrong Rx by the time they come in because  my eyes changed or they are irritating the hell out of my eyes with that sandy feeling, or my allergies are so bad I can’t even fathom sticking anything in them……so now I go lens less!

Occasionally I might ponder how badly do I want to see a clear view today and tolerate the above mentioned…not all that often I’m afraid…I love when people ask how does it look right now to you?! Umm it’s my normal, I forget what it might be like in comparison to what you’re seeing. Sometimes I will say it’s easier if you tell me what you see in detail and I then can respond ‘nope don’t see that!’

Prose

Spent another long day in Boston with cornea doctors. Always the constant evaluation to see where they are at this time….I have a few questions to ask of others. A year ago they attempted scleral lenses. I had a world renowned Doctor who was also part of the original design team, Dr Janis Cotter. After many trials it was decided they weren’t working out. Today they mentioned sending me to Boston Foundation for Sight to trial Prose.

The goals of BostonSight PROSE treatment are to:

  • Reduce symptoms and support healing by restoring a healthy ocular surface environment
  • Improve blurry vision by masking surface corneal irregularities and transmitting a sharp image to the back of the eye
  • Prevent damage by protecting the cornea against the environment and eyelids

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October 2013

I will start off with, I am not correctable with any means available at this time. Drs continue to attempt different ideas but so far nothing is compatible. For me, my visual field fluctuates all day long. My perception of things is constantly different (and different meaning not good). I have been let go of my job, lost my income, lost health insurance, lost my home, lost my driving license, very isolated socially now a days, constant Doctor appointments, poor TV, board game, cooking, etc. views to work with, became depressed, can’t read or view photos in a normal fashion, very poor night time ability almost complete black out, everything glares & creates photo sensitivity. Those are the differences off the top of my head!

Now for the positives. I have a terrific but worn out support system consisting of family & friends, I now reside in my parents’ home, I have activated my Veteran health benefits and they attempt to assist me in any way possible for free. They’ve flown in doctors to view my eyes, friends drive me around when possible (we don’t have much in the way of public transportation around here). I recently was approved for disability after 3 years of no income & fighting, a judge supported it. My very best of friends know the assistance I need at times before I speak up and ask (one automatically reaches for me when walking outdoors at night, she anticipates the need before I do!! Or she can be heard saying step down etc.)

So despite my lack of acceptance and bitching at times I am fortunate too. In the next few months I will be moving into my own place again, exciting and nervous all at the same time….how will I navigate around in the community, some resources I’ve come to depend on won’t be as available to me. It’s coming into reality time and I will gain a lot of independence back but also accepting this visual change is here to stay….that’s the hardest part.

Feeling down today….

KC has impacted my life as I knew it so significantly, that I can’t seem to get back on track….I haven’t figured out how to navigate through all the hurdles placed in front of me, support myself enough to actually have a life, lack of transportation private or public is almost non-existent around me, nothing is within walking distance, I was approved for disability recently thinking that would help to move forward but I’m nowhere near having enough to live on never mind any sort of housing. I’m no longer able to do the previous type of work I’ve always done….my depression has got the better of me today.

Sorry to whine, I know life could be worse, but I can’t seem to help myself lately….I want to rewind time, go back to work, driving, my house, being able to see clearly…….I hate how life looks (haha) now.

I probably have more resources than many….as a veteran, the system tries to help me. My medical and the lengths they’ve gone to have been wonderful. Unfortunately, nothing has been compatible with me so far (3 years now).

I am in the advanced stages of keratoconus. My scleral specialist (who was part of the original design team with Dr Rosenthal in Boston) attempted to fit me 8 different times, adjusting things each time. They were the worst things I’ve attempted. I had constant sensation of them in my eye, extremely photo sensitive, and felt like sand was in my eye…

They’ve attempted many different Synergeyes lenses also so far they are not fitting, breathing etc. well in my eyes. So my point to all of this is, there are many varieties of lenses out there, they all are good lenses, it’s about the fit and comfort level in your eye. Everyone has different issues, unique eye surfaces, there is no “one size fits all”, so to say this one is bad, this one is good isn’t accurate, it’s good for you but not necessarily me……

As of November, I will get disability. What I will bring home a month is equal to 3/4 weeks’ salary from before. I need housing, the allowance for low income is not enough for a room here never mind an apartment. All my household items (2 bedroom household) have been in storage (thank god.it’s.been free) for 3 years now. I stay with family, friends and my suitcase of a life. Yesterday’s housing meeting gave me another slap of reality I guess. A reality I still struggle to accept.

Time for an attitude alignment….

As of November, the disability money will be my first consistent money in 3 years after I lost my job due to KC. Then health insurance, then my home, next was the license. All major life hurdles…..I have taught myself Spanish (maybe not fluent yet) during this time by listening to programs on my tablet. I have a lot of medical appointments weekly that are challenging to find transportation to, never mind the gym. I had a gym membership but it ended when I could no longer afford its monthly fees. I am not a candidate for grafts right now.

My team of Drs do not feel it would be successful right now because of other health/eye issues. Perhaps that will change at some point in time….maybe you find these to be excuses, for me they are the circumstances/hurdles I’m trying to navigate and not feel resentful at life. I’ve not been successful with that as of yet I have a great support system, but that doesn’t equal a rebuilding of my life, career, owning a home again, nor my vision…

December 2013

I do focus on the small bits of each day mainly only because I haven’t come up with long term answers, and avoidance on my part. Now that my disability case is behind me, I need to focus on forward and reclaim pieces of life….maybe I’ll have an epiphany one morning!

I am in an Ultrahealth hybrid lens, I find them easier to put in and take them out but one of my issues is oxygen deprivation with all the lens I have tried. These fog up also but not as quickly or as bad. I also seem to tolerate them one day but not the following day. My eyes are unique and seem to have more issues than most.
That was until I met my lens fitter, she is fantastic, wanted the best fit & comfort level, she had Drs flown into her office from around the country to see my eyes, and she believed me when I said they caused me pain. At the end of all the lenses trialled, I accepted the fact that all lens will have some issues if I was wearing them. She did not accept that fact, and said she would find something better. Then she referred me to Boston Foundation for Sight.

My Drs submitted my case, now it’s waiting time to see if their review team feels they can help me or not. If approved its pretty intense I’ve been told, you actually have to stay there for a week or two until the process is complete (everything is on the premises, you are being worked up the entire time, you actually leave with your perfected lenses). I was reluctant to go, tired of anything to do with my eyes, I didn’t want to focus on my vision anymore. After all the lenses tried including scleral, what could this place offer that would be so different?

 February 2014

I suppose this was good news, but I’m so sick of eye everything and its appointments…..I was notified that Boston Foundation for Sight has accepted my case. Next comes more testing and trial fake lens to see if it will help if so I’ve been told you might have to live in their apartments for a week or two. They work you up and fit and refit you all day long until they feel it’s at its best, I’ve already had Scleral lenses that didn’t work for me that was the first lens they ever attempted. Supposedly Prose differ from other Scleral lenses, although I’m not sure how…..

Boston Foundation for Sight

So they offered Prose lenses…. little did I realize they were about to change my world….

Prose lenses are made differently than all the others. Scleral lenses as in understand it, are manufactured and can then be altered a little to fit the patients eyes. Prose lenses are all handmade and designed like a glove to fit your eye perfectly! Every nook and cranny. Then tweaked after that, over & over during your stay. During my stay, which is 10 days long, 8 hours a day, my eyes are reviewed again and again. Fit, axis, comfort, power level etc. the creation of these lenses isn’t even in the computer design systems yet. The Dr has paper and pencil in hand doing mathematical equations designing the torque levels needed.
BFS is there only clinic worldwide. They have trained Doctors at their facility who then left to work in other practices.

I can see again!

There’s only a handful of Drs worldwide. The Boston clinic is where all lenses are made, including those for overseas. If you are able to be seen, I highly recommend you go. I don’t think there is a vision issue they can’t handle. When I leave next week, I will be wearing the only lenses that don’t hurt, matter of fact I forget they’re in. My lens have corrected 20/200 (legally blind) to 20/20 vision (perfect) along with severe irregular astigmatism. I will only need over the counter readers due to my age…I will be able to drive, day or night!! I have already seen my confidence returning now that I can make eye contact and see clearly…it’s been a very emotional week, the past 4 years running thru my mind. I am so excited to be able to see the world again in detail. I forgot how beautiful everything is…..
BFS is a global leader, tackling the most challenging vision disorders and returning sight to those who need it, using designs not yet offered anywhere else in the world (this is what I was told by BFS, it’s not just my opinion).

I went from ‘there isn’t much hope for your vision to be corrected‘ to a team who worked overtime to design my challenging lenses and give me back perfect vision!! I am truly grateful to the amazing people who made it happen.

Coping

I run into people who also don’t understand, I carry my cell phone with me everywhere and have pictures on it from a KC web site showing examples of how we see images…I will attempt to explain what KC is and how it effects everything, saying that’s not how this works, and read this article to better understand. After that they are on their own and they really don’t care nor do they want to…and I don’t lose sleep over it. If they care about me, I’ve found they truly do try to understand. They don’t always get all of it, but neither do any of us! If it was easy none of us would need this blog!

We deal with enough stressful events with this, it’s not our job to educate all those that refuse to listen!

I tell people I have a visual impairment. Most try to be respectful of it. If there’s forms to be filled out then I ask for assistance or they just do it for me instead. Admitting that I do have a visual issue was initially hard for me to say in public. Now I don’t care, if you understand then great if not oh well, I continue on my way…now when I arrive in Boston and need to navigate around in a huge hospital, well it can be challenging if it’s a new destination for me.

The other place I found challenging was the airport finding the correct check in and gates was at times hard, never mind if they changed where it was going to depart from.

I ask for directions from many people or have them point me in the right direction. Aggravating yes, but its needed. I can’t see the boards to read them….I’ve learned to accept and ask for the help I need.

Final words

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Go on the internet and search that question and everything else you can find on keratoconus. Your knowledge and understanding about your eyes makes you a well-informed patient and your own advocate!

We KC’ers experience a lot of losses and it can be hard to adjust sometimes….just remember it’s just another day, you never know what’s around the next corner.

Rhonda

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4 thoughts on “Keratoconus – my story by Rhonda, USA

  1. Hi Rhonda!! What a story! I’m also from MA! Whereabouts are you?
    I looked at Prose but it’s incredibly expensive and my insurance doesn’t cover it. Anyway I’d love to connect you are the only person on here that is perhaps close to me!!

  2. Please lookup & contact Gulani Eye Institute in Jacksonville, Fl. One of the best in the world. My stepdaughter just had surgery she has bad keratoconus & had Intac surgery. She was legally blind in one of her eyes & borderline on the other. He is great.

  3. I am also from Boston and have Keratovonus, which was just diagonised in the spring. After many visitsat OCB I got approved for cross linking, one eye done and hope to have the other done in February. The only way I can see better shard contact lenses, it is not an easy process but thanks for your blog very helpful!

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