Yes, 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.
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.
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.
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