Tag Archives: keratoconus

New Perspectives For 2017!

Picture: Anime girl with stars and butterflies.It’s a new year and I want to share a bit about my goals, health, and perspectives for 2017. I’m very happy with my life at this moment in time, however, there’s always room for more improvements and many other projects to try! ^o^/

First, let me update a bit about my issue with Keratoconus. I had stayed silent about it for months, mainly because people were confusing this blog’s main purpose to be a support group for those with the eye disease. It is NOT, it is my personal blog about my quest for achieving happiness in my life, in spite of having the eye disease. The main reason why I write this blog is to blabber about my goal in finding happiness and not linger too much on the hardships of living with Keratoconus.

OR some readers were using my personal story as the “cure” for their own disease, which disturbed me greatly because every case is different! What worked for me may not work for you. Again, I don’t want readers to take in my positive results and then storm the offices of their nearest ophthalmologist demanding a corneal transplant! It’s a highly invasive procedure and is performed for very severe stages of the disease, which was my case in early 2016.

I highly recommend that a person suffering from the disease seek out a direct specialist in the disease. Not all ophthalmologists are specialists or hold knowledge about every option for treating Keratoconus.  So, by all means, DO ask your doctor directly in what he or she specializes in!

Your personal case with Keratoconus may be wholly different from mine, as there are different stages of the disease and there’s no such thing as one treatment to cure all. In fact, there isn’t a cure for Keratoconus at this point in time, these treatments and procedures are just a temporary fix, to grant a bit of eyesight to those who are greatly visually impaired until an actual cure can be found!

That said… My eye specialist/surgeon met with me at Mayo Clinic, we talked for a long while and weighed my options, and we decided together that corneal transplant for my left eye was my best bet above any other procedure. And the choice has been a complete success for my particular case! ^_^

Why just my left eye? Well, the procedure cost a bit over $25,000 USD and my health insurance barely agreed to pay for that, including the separate costs for post-op visits to Mayo. I am not a famous writer, scientist, or video game developer yet, so I’m unable to purchase a corneal transplant for my right eye on my own. However, I’m greatly appreciative of my left eye, and I’m not complaining one bit!

Three times so far, I’ve had to upgrade the prescription of my glasses, because my eye has improved constantly over the months. I was afraid, each time, that the transplant no longer worked for me as my vision became a lot blurred again, not to the point of what it once was but I feared that my vision was regressing.  Instead, my doctor discovered that my current eyeglass prescription was just too strong for my eye and I needed a lower prescription. Whew! ;^_^>

For this reason, Dr. Maguire has insisted that the stitches around my transplant shall remain in place for a few months yet, as removing them too soon may cause some issues. The stitches look like this and no it’s not a photo of my actual eye – I’m too shy! Eye Stitches. I don’t feel them and they don’t bother me, so I don’t have a problem with waiting to have them removed.

I have another appointment to Mayo sometime this month, perhaps the stitches will be removed then or maybe I’ll gain yet another new eyeglass prescription. It’s a little annoying, making the trips back and forth to the local mall for new eyeglasses, however, it’s so very awesome that my eye is still improving for the better post-surgery! In the meanwhile, I’ve caught myself working for an hour online, before I’ve realized that I haven’t put on my glasses yet that morning.

My eyesight in my left eye has so much improved that I feel like my eye disease is not a huge weight on my shoulders right now, which frees up a lot of room for me to focus (pun attended!) on other things within my life’s journey.

I’m currently studying the science of genetics and chemistry, which I find super interesting, as much as my love of physics. And recently, my friend mentioned his love for philosophy, so I’ve been enjoying Hank Green’s Crash Course – Philosophy and learning a lot more about the subject than I had before. I learned that my personal philosophical view is called “Rule Utilitarianism” and bananas are now called “Chom Choms”.

Picture: Crash Course Chom ChomsThe second part is a bit of an inside joke, for those following the course. ^w^

As for writing, I still dabble in novels. However,  I did download the Unity Engine, as I will try my hand at coding/writing more advanced video games beyond the RPG Maker scene. That is… if I can manage to pry myself away from The Sims 4 long enough to actually open the Unity program to see what’s what. Heehee!

Socially and mentally, I’m working on my issues in therapy, concerning difficulties in socializing with others, social anxiety, and PTSD. I did hit a spike of depression during November 2016 (It was a rough year for a lot of people…), but now the black dog has been settled again. I enjoyed my Christmas with my sister, roommate, and a new friend.

I am looking forward to this New Year, with so many new paths for me to travel and discover ahead of me. Here’s a song for you: “Shona” by Jake Chudnow. Thanks for reading, dear reader, as always! Happy New Year! ^o^/

-D

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About TommyEdisonXP!

Picture: anime girl waving hello.Hey there, readers! ^o^

I wish to share with you one of the coolest YouTubers that I follow, named Tommy! He’s a blind movie critic and vlogger, with a very beautiful heart and a wicked sense of humor. How I came across his videos in 2015 is a long, but hopefully entertaining, story!

As you all may know, I suffer from an eye disease called Keratoconus, which greatly impairs a person’s vision. I had reached the end stages of the disease in late 2014 and I was experiencing a really tough time. I began to have more accidents of stumbling down stairways, walking into walls, and a few near misses around the stove while cooking. My world was increasingly getting smaller, as I began to not be able to read any text on my own without the help of a screen reader online, and I could no longer read tangible books or subtitles to movies.

At some point, it was suggested to me to learn braille and to train in using a white cane, in order to prevent me from harming myself on stairs or walking into walls, and so that the stove could be labeled with braille to help make cooking easier on me. However, I was a bit anxious about using a white cane, I worried that it would be too difficult to learn and I hardly knew anything about it.

So, being the YouTube brat that I am, I logged on to find a few videos explaining how to use a cane. At this point, every video was a blur to my eyes, no matter that it was set to 1080p HD, but I figured I could get the gist of the movement at least. I watched a few videos and began to feel a little better about the idea of a white cane, but it wasn’t until I came across Tommy’s video: How Blind People Use A White Cane, that I felt “Yeah… I can do this. It will be okay!” ^_^

I fell in love with his spirit and “dad jokes” right away, as he made me laugh A LOT. So, I decided to watch more of his videos, where he answered curious questions of what it’s like to be blind and I was thrilled that he did movie reviews because I LOVE movies! After an hour of browsing his channel, I subscribed and began sharing a few of his videos on my Twitter: NerdyGrlDani. I often share the coolest things on my Twitter wall, it’s just what I do. =p

After a while, I got a new follower named Ben Churchill, and I had no clue who this man was. He never seemed to leave a “like” to any of my other shared links, only the Tommy videos, which should have given me a clue… but I’m a bit slow sometimes. I figured, “Hmm, he must really like Tommy’s videos. Perhaps he’s struggling with blindness too.” And I decided to keep posting more of Tommy’s videos, so my new follower could always enjoy them too. Yes, I’m so very silly! You don’t have to leave a comment telling me as much, I’m aware! ROTFL!

It wasn’t until after my successful corneal transplant that I was able to actually read the end credits to Tommy’s videos and realized that Ben Churchill is the producer and a great friend to Tommy!

Picture: oh my god meme.

You see, I had a free screen reader that could only read closed captions to a video and not actual rolling end credits. Heehee! So, I was kind of floored that for months the producer of Tommy’s videos was following me and liking every video I posted. I immediately began to follow him in return and the given “likes” took on a slightly new meaning for me. He appreciates that I share the videos, but I appreciate him and Tommy much more for making the videos!

This is why I’m giving a little shout-out here and sharing the channel to all of my readers. ^_^

Tommy was born blind, yet he taught me that it’s possible to find happiness regardless of a tough card dealt in life. My eye issue is nowhere as tough as his situation and yet he didn’t give up or feel sorry for himself, as I was starting to do for myself. He’s been on more adventures that I have been in my entire lifetime, he’s very positive and happy within his life, he doesn’t let his blindness hold him back. It was a true inspiration to me and continues to be so.

And now I leave you with a hilarious video of his: SIGHTED PEOPLE THINK I’M DEAF?.

Thanks for reading, as always! Have a great day and good luck on your journey! ^_^v

-D

This Is NOT A Keratoconus Blog!

Picture: anime girl with flower.Hey there, everyone! ^_^/

I thought I should take a moment to explain to all of my new and old followers to this blog, that this is not a support blog for those suffering with the eye disease named Keratoconus. For the third time, I had someone approach me with this idea about the purpose of my blog.

I do understand the confusion for this mistake, as several of my posts have been re-blogged on a cool support site/blog for those suffering with the disease: KeratoconusGB. This particular group is also available on Twitter and Facebook. I’m not sure why they’ve decided to re-blog my posts on the subject, I am flattered, however I’m not in any partnership with that site or groups.

I’m a blogger who happens to suffer with Keratoconus and my blog is about my quest to find happiness in my life in spite of being diagnosed with the disease. And it’s not a blog mainly about my disease either, as there are many other hurdles that I must overcome in my life to reach my goal of happiness.

I have posted/ranted about my particular case of Keratoconus, because this blog is my personal space to rant about any situation I’m going through within my life – good or bad. For a long time, my disease was a main focus, but after my keratoplasty surgery it hasn’t been a focus for me to rant about for a long while.

My surgery was a huge success, I am able to see very well with my left eye, and I’ve said farewell to my screen reader months ago. The surgery was such a great success that the Mayo Clinic asked that I release my case for further study among their experts and students, which I didn’t hesitate to sign those consent forms. And it was so cool that I was able to read and sign directly on the line of the forms, something that I wasn’t able to do before the surgery. Anyway, if my case has a tiny chance of improving future procedures for others, I’m all for it! ^_^v

However… I cannot and will not suggest procedures for anyone with this disease. I am NOT a doctor or expert, I do not play one on TV nor on the internet. Every case of Keratoconus is different for different people, there are different stages of the disease, so it would be foolish and negligent for me to suggest any one procedure to someone else.

What I DO suggest is that anyone who is suffering with the disease to seek expert help IMMEDIATELY. Do not wait around, by any circumstances, because if the disease is left untreated it WILL become a lot worse and your options for treating it dwindles. I’m speaking from experience on that, I waited far too long and my only option for my case was keratoplasty, which is a very invasive procedure. I missed my window of opportunity for Intact corneal surgery, which would have been a lot easier on me.

And I do suggest that a person with Keratoconus search directly for those who have many years of experience in the disease and treating Keratoconus. Not every ophthalmologist specializes in the disease, therefore they may know very little on how to treat your case or be unaware of all of the available procedures for you. The Mayo Clinic often have direct experts in the disease, if you have one located near you and they accept your insurance, it doesn’t hurt to go check it out. For any other place, I’m unsure and unable to give sound advice about that.

If your ophthalmologist claims that he or she have many years of experience in treating Keratoconus (my eye specialist has 20+ years, by the way) , then you’re probably in good hands. Remember, NEVER settle for the conclusion of “There’s nothing we can do for you, until the disease becomes worse.” That’s not true! There’s plenty of options out there for those in the beginning/mild stages of the disease and an expert wouldn’t tell you to wait.

And beware of those who would tell you that any one procedure would “cure” your disease, as there is no real cure for it at this point. With these procedures, you’re just buying time for sight, until there is one. I bought myself 10+ years for my left eye and I’m so very grateful for that!

This is a very terrible and heartbreaking disease. I understand the desperation of wanting to correct it and to find some kind of hope/support for it. However, I’m kind of useless in that regard, I can only offer the above suggestions. You may do better in joining the KeratoconusGB groups on Twitter and Facebook, with many other members going through similar issues, for actual emotional support.

Picture: anime girl resting on bench.This is not a blog about the disease however, I created it after the shock and devastation of my diagnosis two years ago. I created this blog as a hub for me to express my frustrations, not only about my personal eye troubles, but about other situations within my life. Case in point, I have written and posted 120 entries here, and out of them only fourteen posts are about or briefly mentions about my eye disease (including this post).

I share this blog online for my pals and family to take a gander at. I had NO clue that anyone else would read and follow it, although I am flattered and don’t mind it. I’m appreciative of everyone who likes, comment, or follow my blog of scribbles. Thank you very much! Hugs! (っ´▽`)っ

I can’t fathom what my future will bring for me and that’s scary sometimes, the not knowing part. However, whatever happens, I shall blog it here as usual.

Thanks for reading, as always! And today’s song is: Wind by Akeboshi. ^_^v

-D

My Life After Corneal Transplant

Picture: anime girl wearing glassesYes, I know… I had claimed that my last eye update was my LAST eye update. I may have spoken way too soon, as I had no idea that I was in for a whole different experience post-keratoplasty (corneal transplant). I’m in the mood to blog today and this topic is on my mind. Yes, this is a long one, so grab a snack and buckle up! ^o^/

I must be completely clear that my story and experience should in NO way be taken as a gospel for corneal transplant. The truth is, Keratoconus is a very tricky eye disease and every case of it is different. The results of keratoplasty may vary for each individual, which is why I suggest that every person suffering with Keratoconus should consult a professional expert in the field of this disease, to find the right treatment for your particular case!

And yes, I do suggest taking a visit to The Mayo Clinic, if there’s one near you or if you have the opportunity (insurance) to visit one. They have a lot of great experts devoted exclusively to Keratoconus and treatment options. It may be a biased endorsement on my part, but then again, it is my blog. Heehee! ^o^

I also want to be clear that although my procedure was a complete success within my case, my eye disease is not cured. There is no cure for Keratoconus currently, however I’m so very happy and grateful for the time I have bought for myself, as my vision improvements will last anywhere from 10-20 more years!

Now that the disclaimers are out of the way, this is my story…

To summarize for those who’ve missed it: I had surgery on February 2nd 2016, at The Mayo Clinic located in Rochester, Minnesota. The surgery went well, I was unconscious during it (under anesthesia), and when I woke up I was a lot loopy (more details about that here: My Last Eye Update!), but not in pain. Dr. Leo J. Maguire, a leading expert in Keratoconus and treatment, assured me that we would “pack the eye with a lot of pain-killers”, so I wouldn’t wake up in pain or have to experience it for at least two hours after the surgery.

However, after two hours, I did experience a lot of pain. I would wake from my sleep often in so much pain, in my nice hotel room that I shared with my sister and roommate, and I would desperately wake my sister who was located in the bed next to mine. I would beg her for another prescription pain tablet, as Dr. Maguire had prescribed codeine for me, weeks before the surgery. I had experienced such painful sensitivity to light, to the point that it was unbearable and I refused to use my hotel bathroom with the lights on. I learned to use the toilet with the lights off!

The following day, after my surgery, I was to visit with Dr. Maguire for a check up and to remove the bandages and eye shield. This is standard protocol, yet the lights of the clinic hurt so much and I held my face in sheer pain in the waiting room. Once the doctor and his assistant met with me and saw how much I was suffering, they turned out the lights in the exam room and gave me a pair of dark glasses.

Dr. Maguire was genuinely sympathetic of my situation, yet a lot confused, as this wasn’t the usual response he had experienced with patients after keratoplasty. However, he admitted, “It’s a rare occurrence that sometimes happen with a few cases, but from my examination of your eye, it seems like everything is fine with the surgery.”

The moment of truth arrived, when I was to read the eye chart. Before the surgery, I had trouble reading the big top letter of the chart, with either eye. For years, I had walked away from these tests feeling like a “failure” somehow, because I always read it wrong or couldn’t read it at all. I hated to admit, “I can’t see it… I’m sorry.” So, I wasn’t too happy about reading a chart that was my nemesis for so long, while experiencing such pain on top of it.

Picture: happy tears.However, I blinked a few times and began to read the first three lines perfectly. Dr. Maguire was completely taken aback by this and he eagerly asked “Want to read more?” “Yes!” I said, as I was eager too and wanted to see just how far it would go. I read the next slide and then another! My heart was racing so fast, I couldn’t believe it, I had just gotten surgery the day before! How was this happening?! I was so happy that, for a moment, I didn’t care about the pain!

That’s when Dr. Maguire had said something that I’ll forever remember, “Hooah!” (a US military expression of approval) and then he said, “I guess, you’re just one of those people of ‘no pain, no gain’. You’re doing better than usually expected of most patients. Good job.” His statement was so very profound, as I took a moment to think to myself, “Yes, that’s true. It’s rare that any triumphs in my life is gained without struggle. My life has always been that way, I’m not sure why, but it has. Why would this situation be any different?”

I returned back to the hotel for my last night, before my sister, roommate, and I would make the trip back home through an ongoing blizzard. The triumph of the day was quickly forgotten, as I felt pain and misery. I was so very tired and wishing to sleep, but only able to have two hours at the most, before I sat bolt upright in my nice hotel bed in serious pain. I felt so miserable and wanted to weep, but I was too afraid to do so, out of fear of causing complications to my new eye.

I would hold back tears and have a “stiff upper lip” for the next three weeks, until my next Mayo visit. I was asked to read the eye chart again, however my implant was more “settled in” and adjusting itself. I didn’t read the chart badly, but not as extraordinary as I had done before. When the doctor and his assistant left the room for the moment, I turned to my sister and warbled, “Maybe [my transplant] isn’t working anymore… Maybe it’s rejecting itself…”

Tears welled up in my eyes and I cried for a moment, my first cry in three weeks. I quickly wiped away my tears and gathered myself, when I heard my doctor and assistant traveling back to the exam room. I never want to make a scene and often hold a “brave face” in public. Dr. Maguire assured me that everything was fine and that I was still doing very well. I was a bit doubtful, because of the eye chart test. And then my life of returned sight began…

It started when I looked into my bathroom mirror, as I do every morning while brushing my teeth. I noticed that I have marks on my face (age lines), right under my eyes. It was startling and I wondered, “Had I always had those?” Next, I noticed that my hands seemed a bit “vein-y” and the tips of my fingers are bright red. I was confused and worried that my body was somehow sickly.

Picture: confused anime girl.I shared these concerns with my sister and she smirked, “Yeah, your fingers have always been really red and you’ve always had those lines under your eyes.” I then realized that the last time I was able to see myself clearly, not as a blur, was in my early twenties. After the surgery, I was observing myself as an older adult in my mid-thirties for the very first time. It was scary, sad, exciting, and disturbing all at the same time. I had aged and wasn’t able to see that before.

For three years, I was accustomed to having extra pain in my arms or elbows, from running into the door frame or doorknob of any room I entered or exited, because my depth perception was off by much. Suddenly, I didn’t have that pain anymore and can enter/exit doors just fine.

For two years, I would cling in great fear to banisters of staircases, as I had a habit of tumbling down stairs. This death-grip had saved me on a few occasions, when I did tumbled and was able to catch myself quickly, only facing the embarrassment of two small dogs (belonging to my sister and roommate) as they peered at me with surprise that I had fallen. During those moments, I was relieved that my sister and roommate was not home to witness it, but at the same time I felt horrified that I was home alone. Had I tumbled all the way down and was injured, I would have no one to call for emergency help.

Post surgery, I now dance and skip down the stairwells in a silly way, that I use to do in my teen years. I haven’t stumbled down the stairs not once yet, since February. ^_^

Within the first weeks of April, my sister bought home a Time Magazine special addition of “A Year In Space – Inside Scott Kelly’s Historic Mission – Is Travel to Mars Next?”. She hesitated to purchase it, as the price for this particular issue is $15.00 (USD), but then she thought to herself, “Dani could read this magazine too. I’ll share it with her.” I will admit that I completely hogged the magazine for a day and read the majority of it.

I then realized, with such satisfaction, “I’m READING!” Before my corneal transplant, this was not possible at all. I had trouble reading huge font and was relying heavily on a screen reader online, but now I am able to read standard magazine and book print, without glasses. I didn’t finish the last two articles of the magazine yet, as I stopped to shout about the fact that I was reading again, on Facebook. I enjoyed the “likes” that I had received from my small circle on that site.

On Saturday, this week in April, I visited my local eye care center to fill my new prescription for eyeglasses. On my last visit to Mayo (in March. I will return to Mayo in the summer, to get the stitches around my transplant removed.), Dr. Maguire gave me a script-to-go for new eyeglasses, as my status within my left eye has changed from “legally blind” to “nearsighted”. I’ve always been nearsighted and dealt with extreme astigmatism, since age seven or eight. Keratoconus is a separate and more devastating eye disease that occurred in my early twenties.

In other words, I’m use to wearing glasses in order to see 100% correctly, but I was NOT use to living as visually impaired as I had became over the last decade. My old glasses did not help my impairment in the last four years before surgery, not at all. However, I had continued to wear my old glasses out of habit, and when they fell apart from old age it didn’t make a difference within my vision to not wear them pre-surgery. It’s a very big deal to me, that I am able to have a new eyeglass prescription for my left eye, that my eye has been “reset” back to my familiar eye health of my youth. I am happy that my new glasses will not be just a sentimental accessory, like my old ones were.

Picture: Your Lie In April - Kaori

Every day, I see things that I’ve haven’t seen before or I’m re-experiencing the forgotten details of what something actually looked like before my years of blindness. Street curbs are no longer a threat to me, but is now a fun thing that I like to hop up or down from. I seem to smile more and feel a lot more brave, whenever I leave my house and travel around Minnesota. I have more confidence in myself, because I can now see. Suddenly, my entire world seems a lot more colorful…  at least in my left eye. ^_^

I have been asked before, plenty of times, “When will you have surgery for the right eye?” Well, technically, I could have a transplant in my right eye in about four months from now. The policy is that keratoplasty is preformed one eye at a time, with a six month waiting period in between each surgery. The problem is, my surgery for one eye had cost over twenty-thousand dollars, and my insurance will NOT pay for it twice! I was very fortunate that my insurance approved it for my left eye (ahem… actually my sister and I had to fight hard for that right, and forced them to approve it, but lets not split hairs now! Water under the bridge and all that! ^w^).

Unless I win the lottery or become a famous writer overnight, a second surgery is out of the question for now. This is all that I will get and I better make it count! I’m honestly so very grateful for what I do have, I’m over the moon about it. It’s such an extraordinary feeling, when I come across a task that requires sight and I can do that task. I can see it and I can read it. I wasn’t able to claim such things for years, but now I can!

I’m very glad that I didn’t give up, even though plenty of times I felt like I wanted to.

As always, thanks for reading! Here’s a fun song that I wish to share: PIXL – Sadbot. I don’t think this song is “sad” at all, it’s so very bouncy and makes me dance! What do you think? Have a great week, everyone! ^o^v

-D

My Last Eye Update!

Picture: happy anime girl.I’m happy to announce that this will be my last eye update for a very long time! My corneal transplant was a huge success and I am very happy to report it.  ^_^

Let me start off with the proverbial disclaimer, that this is just my personal story of success, as the results of corneal transplant may and do vary with every case of Keratoconus. Every story of this procedure is different, as every case of this rare eye disease is different. If you’re curious about corneal transplant or other eye treatments for your disease, please seek the advice of a trained professional in order to find the right treatment for you! Now, onto my personal story…

Leading up to my surgery, I felt a lot anxious and worried about it, but I was more anxious to just get it over with and began my recovery. I was so determined, that I refused to let a blizzard get in my way of the surgery! Dr. Maguire had called every patient personally, warning us of the huge blizzard to hit Minnesota on February 2nd, and offered us two options: To either reschedule or the option of staying in a hotel close to the clinic and braving the fifteen minute trip through a major storm.

I’m a very stubborn woman, I did not wish to wait for another week or so, and therefore I choose the risky option of staying in a hotel and braving the storm.  My sister (Kelli), roommate (Edith), two small dogs (Fifi and Apollo), and I gathered into my roommate’s car and made the hour and a half trip to the hotel,  in the middle of the night to beat the blizzard.

The money that I had saved up previously had came in handy, as I was able to pay for a two night stay at a swanky three bed hotel room. It was beautiful, with added wi-fi and cable TV, and I enjoyed watching Doctor Who on the BBC America channel. As we slept there during the rest of the night, the blizzard hit hard and it was white-out conditions by morning.

It was difficult to see any of the roads, my roommate struggled to drive us to the clinic, and the car was filled with such anxiety. There are a lot of winding roads on our travels and many ditches, which other motorists were driving off into, and a trailer-truck was jackknifed on the highway from an accident. I sat in the backseat of the car, with a very frighten little dog,  we were all covered head to toe with melting snow, my heart was racing and hoping that we would get there safely.

I have to admit that my roommate is a very excellent driver and she got us there and back again in one piece! I owe her for indulging my stubbornness and getting me to my surgery on time! Edith ROCKS! ^o^v

Dr. Maguire and staff was very relieved and happy that I had made it for my surgery. Everyone was so kind, helpful, and understanding that I was a lot nervous and anxious about the whole thing.

As they lied me down on the operating table and placed the oxygen mask over my face, I whimpered and began to have a panic attack. I told the anesthetist that I was a bit claustrophobic and he was kind enough to remove the mask and administer the oxygen in another way, placing the tube next to my chin instead, and coaxing me to take deep breaths. A second later, I was unconscious and they began the surgery.

I woke up without pain and an eye-shield over my left eye. I was still out of it, from the anesthesia, so the first thing I said to the nurses was “When do I get my eye patch? I want to be a pirate. I like pirates…” Then I said randomly, “I’m such a science nerd! I want to go to school to study physics.” I fell asleep again…

When I opened my eyes a bit later, my sister was sitting next to my bed, and Dr. Maguire was no longer in scrubs and wearing his usual suit and tie. He explained that everything went well and that I could go back to the hotel for rest. Then my sister presented me with two stuffed kitties from the gift-shop, one has a mustache for some reason, the other was a cute little fluffy black kitten. I sat the fluffy one on my tray, as the nurses gave me a bit of yogurt before I left the hospital.

By the time I reached the hotel, the pain began and I was super sensitive to every light. We had to turn off everything and it hurt so much for me to even look at the screen of my cellphone. This doesn’t happen to everyone who have the surgery, it seems that I’m just super sensitive to light after my surgery and it triggered migraines, which was the bulk of my pain. The next day, I returned to the clinic and a nurse provided me with dark glasses, which made my situation a lot less painful.

Dr. Maguire dimmed the lights of the room and preformed my first eye test. The moment felt like a freaking miracle! Just less than two days after my surgery, my left eye have the acuity of 20/100, without glasses or any other corrective lenses! I can’t remember my left eye having this much vision, because it’s been well over sixteen years since I’ve been able to read anything with that eye, long before I was first diagnosed with Keratoconus.

The best part of it is, my acuity will rise even greater over the next couple of months, this is just the very beginning! My sister confessed to wanting to cry in that moment, because I could not read the huge E on the top of the chart before, and now I was reading three lines below the E perfectly. Dr. Maguire was very pleased and impressed with the outcome, as he gave a hearty “Hooah!” (US Army response of affirmative) and noted that my current vision is “walk around vision”. The best is yet to come and I’m certain that I’ll be okay from now on. ^_^

My journey is not over yet, as I have an appointment next week, and more appointments after that, to remove stitches and to check on my progress. However, just as I am stubborn in spirit, my body is stubborn to continue its course in healing. The pain has fallen by a lot in the last few days and my sensitivity to light is fading away. In fact, I’m writing this usual rambling blog, just four days after my surgery, without the aid of Rupert (my screen-reader). What do you think? Pretty good, eh?

Anyway, I know that the majority of my readers aren’t here for such eye ramblings and I will return back to my usual inherited madness and randomness. I just wanted to leave just one last post about my eye issue, which will hopefully be resolved for the next ten to twenty years! I’m happy and excited about my future! Hooray!

As always, thanks for reading! I’m going to rest a bit now, but I’ll catch you on the flip-side! ^o^v

-D

P.S. – I owe all of my thanks to my sister, Edith (roommate), Julie (best friend), Mahonia, Dr. Brenda (my therapist), all the medical doctors and nurses, and most of all to Dr. Leo J. Maguire, who has put his expertise to hard work in order to help give me a second chance in life. I very much appreciate all of the support I’ve gotten from everyone, mentioned or not, as it taught me that the world may not be such a bad place after all… at least not all of the time. And yes, there should be an annotation above my head that reads, “Dani will remember that.”  =p

Treating Keratoconus

Picture: anime girl writing.Hello, dear readers! ^_^

I have been preparing for my upcoming eye surgery (corneal transplant), however I have a very important post for anyone seeking help with their Keratoconus and may be browsing my humble personal blog for any hint or answer. I was planning to wait until after my surgery to write and post this, but it will worry me too much if I don’t do so now, as I realize there may be some misinformed people out there who are going around on others blogs and spreading misinformation. I want to prevent such things on my particular blog for my three readers (as far as I know) who suffer with the eye disease, because I do care! And yes, Rupert (my screen-reader) is enabled for this one, as I wish to be perfectly clear in my words, with little typos. ^_-

This is very important, so please read my words carefully: I am NOT an eye specialist of any kind nor is this a blog written for Keratoconus support. I’m just a blogger who happen to have Keratoconus, therefore everything I post on my blog about the eye disease is about my personal case and not to be applied to every case of Keratoconus. The purpose of my blog is to share about my life, personal interests, thoughts about life and happiness, not really to give education for all types of corneal diseases or Keratoconus. I do rant sometimes about my eye disease, but I only post things about my particular case only.

Even though I often read medical reports about the disease on PubMed, it does NOT make me an expert nor specialist in Keratoconus. I am not an expert in treatment options for anyone’s case, because I did not spend years in medical academia nor have my PhD in medicine. My posts are about my choices of treatment, under the guidance of my eye care specialist, that is all.

That said, I only have this simple advice to offer the few readers of my blog that suffer with Keratoconus, and for any new stragglers who may be passing by my blog: Seek a credible and well educated specialist in the field of Keratoconus or corneal diseases!

Do not rely on personal blogs (like mine or others) or unofficial sites to make the decision for what is the best course of treatment for you! Personal stories of eye treatment success do not necessarily mean that there is only one true course of treatment, as every procedure available have success stories. And not every procedure is appropriate for all cases of the disease! I’ll explain why.

animefirstaidThe honest truth about Keratoconus is that there is no cure for the disease, no permanent solution or fix, and every available treatment for the disease is to simply buy time and approve vision for just a little while longer. Perhaps science and technology will find an actual cure for this disease someday, but for now any and all available procedures are just temporary tools to help gain some vision, before the disease takes it away yet again.

These procedures include (but not limited to): RGP lenses, scleral lenses, intact corneal transplant, corneal transplant, and CXL (corneal cross-linking). All of these procedures have risks and benefits. What determines the best treatment for you depends on your particular case, as some procedures are not applicable for those in early stages of the disease and a few are useless to those in the late stages of the disease. I will not diagnose anyone’s case, as I said before, I am not qualified to do so. Dammit, Jim, I’m a writer and a math student… not a doctor! So, please consult a professional to help decide which options are best for you. ^_^

Here’s a few tips on finding a good specialist: Don’t be afraid to search around for the best specialists in Keratoconus and other corneal diseases. On your visit, don’t be shy to ask the doctor how many years they’ve studied and treated patients with Keratoconus. That is, if the doctor doesn’t rush to share that information with you upfront on your first meeting with him or her.

Be sure to bring up every option with your specialist (not just the procedure you’ve researched and have a personal liking for) and learn which options are most applicable to your particular case. Remember, every case of Keratoconus is different or in different stages, and this is why its best not to compare success stories of others to your own level of hope. It could be that the very procedure that was a huge success for someone else, may not be a good option for your case at all.

A good specialist will weigh out which options are best for your case, WITH YOU, and will explain carefully why one procedure will not work and why another procedure may work instead. Beware of doctors who seemed rushed and preoccupied with your payment to them, more so than answering questions or going over alternative treatments with you. If you spend more time discussing payment plans with a doctor, rather than actually addressing your questions and concerns about a procedure, it’s a good sign that you should walk away and find another doctor.

animeevildoc38Beware of any doctor who would claim that a procedure would “cure” your Keratoconus or will yield permanent results, as no such thing exist at this time. Unfortunately, there are doctors who seek to take advantage of desperate patients by giving them false hope, in order to “make the sell” of expensive medical procedures.

Lastly, don’t let anyone bully you into a procedure that you are not comfortable with. It is YOUR eyes and you get to make the final say in its treatment. Don’t allow doctors or anyone else to force their ideas of what procedure you should have or not on you. A good specialist will always give you options to choose from and whatever you decide is ultimately what is best for you.

***********

For my personal case, I’m in the advance stages of my Keratoconus, with a history of extreme astigmatism before the disease, and Dr. Maguire gave me two options. My left eye is completely shot, so there’s no other option but to have a corneal transplant in that eye. My right eye is very poor in vision, bad enough for a transplant, however still viable enough for an RGP lens. I was left with a choice of which eye I’d like to see from first, left or right. I was the one to choose transplant on my left, because if things go south, I will still have my right eye that I can try an RGP lens with.

If the surgery is a success, I’ll have a working left eye temporarily (from 10 – 20 years), then I may choose a second transplant or RGP lens for my right eye , if I feel greedy enough for it. I happen to do well with just one good eye, or so I once did in my youth, before the disease claimed both of my eyes. Trust me, I know what I’m doing! And I’m not doing it alone, I have a doctor on my side who’ve spent over twenty-five years studying and treating Keratoconus, as well as other corneal diseases. I’ll have my surgery February 2nd, 2016.

Anyway, thanks for reading, as always! And please be safe on the interwebs, everyone. ^_^v

-D

Update: I’m Ready!

Picture: Running late anime girl.This is just a quick little update, as I realized that I haven’t been blogging here for a few weeks now. I’ve been a bit preoccupied, to say the least. ^w^

Besides the rush of the holidays, I’ve been preparing for my eye surgery, which will happen in a couple of weeks.

Next week, I have an appointment to visit the Mayo Clinic for a pre-operation exam, just to make sure I’m healthy enough for surgery. I’m not worried at all, my doctor is certain that everything is fine, but it’s just a precaution.  After that week, I will have my surgery on February 2nd!

My therapist asked if I was feeling anxious about it, but honestly it’s the only thing in my life right now that I’m not feeling any anxiety about! I feel excited and hopeful, although it’s early yet, so I may feel nervous closer to the date or when I’m sitting in the operating chair.

From what Dr. Leo Maguire has explained to me, I will be placed in a special operating chair for this procedure and wheeled into the operating room. I will be given some anesthesia, although I will not wake up groggy or out of it, unlike from when I had an operation in autumn 2015 to remove my appendix. No, I didn’t blog about that, because it was highly gross! =p

Doctor Maguire said that he would pack my eye with a lot of pain-killers, so I will not experience terrible pain for three hours after the surgery, unlike my experience after my appendix surgery. And he has prescribed codeine for me, which is on standby for when I need it after surgery. So I’m prepared to manage my post-operation pain.

Picture: Laura Bodewig eyepatch.Meanwhile, I am to return to Mayo, the day after my surgery to make sure that it was a success and that there is no sign of rejection from the new cornea. The risk of that happening is very low, but one can’t be too careful about it. I will have to wear an eye-patch and use special anti-bacterial drops, after the surgery. And I will have to make several more trips back and forth to Mayo, to check the eye and remove stitches for the next four or so months.

That said, I may not be blogging or reading blogs for a while, as I recover. I will try to keep my manga blog updated: (Lonely Hunter, if anyone is actually reading it! lol), every Sunday as usual, but no promises!

I’ve finished creating the entire second arch of the series, which I had planned to begin sharing in February, but it’s unedited and it may take more time before I’m able to work on it again. I apologize to the TWO people, that I know for sure, who are reading it. LOL!

Picture: The white rabbit, alice in wonderland.So… this isn’t much of a post, I know, but I’m kind of pressed for time at the moment. “I’m very late indeed, Alice!” said the White Rabbit, “No time to say hello, goodbye! I’m late! I’m late! I’m late!”

However, I shall leave you with one of my favorite Doctor Who fmv (fan music video). I can’t remember if I’ve shared this one before, I apologize, if it’s a repeat, but it’s the theme on my mind right now. I love the Tenth Doctor and the song very much! Click here: Doctor Who: Handelbars.

Thanks for reading, as always! I’ll see you soon! Many hugs! ^_^v
-D