I wish to update everyone about the situation with my eyes! There is good news and bad news, but the good outweighs the bad by far, leaving me with a lot of hope and determination.
However, I’m a long winded sort of person, so if you want the final details of my diagnosis and the plan to sort it out, it’s okay to skip to the TLDR part. I really want to post a record of my whole adventure of my trip, for future reminiscing sake! ^_^v
December 21st, Monday, 11:45am: A cab had arrived outside of my house, for me and my sister. The driver was particularly polite and thoughtful, as he marched up the pathway to our door and knocked, to make sure that we knew he had arrived.
It would be a long journey, because the Mayo Clinic is located an hour and thirty minutes away from our home. My sister and I were well prepared, she had charged her phone and I had charged my Kindle Fire the night before.
The cab driver, who will remain nameless (because for the life of me, I didn’t think to ask him his name. I’m terrible!), greeted us with a smile and said cheerfully that we were going to have a fun journey.
I had planned to enjoy the scenery for a while, before using my Kindle, however I had quickly realized that there weren’t much scenery. There was nothing but endless farmlands, in the middle of winter, miles of barren trees and dead fields.
Fifteen minutes into the ride, I gave into my boredom and listened to Bill Nye’s book, “Undeniable”, on Audible . It is a very awesome book! I enjoyed my ride to and from Mayo, while learning so much about Evolution from Mr. Nye.
However, the poor driver was not prepared and his mobile phone died ten minutes before we were to reach our destination. My sister and I could only offer sympathetic moos to his situation.
The Mayo Clinic in Minnesota is the size of an airport! Waiting outside of the main osculating doors, there were a group of staff members standing in the frigid cold, in thick uniformed coats. Their job was to open car doors for patients, to bring wheelchairs to patients who needed them, and to direct patients to where they have to travel for appointments once inside the main hall.
I believe that these men was very good at their jobs, friendly and understanding, and most helpful. They are very dedicated to their job, as the low temperatures of a Minnesota’s winter is brutal at best. My sister and I were greeted with a smile and one of the men said, “Please, come in and out of the cold.”
The driver knew that we would need a ride back to our town after our visit, however we could have gotten another by calling the company. The driver was determine to wait for us, even though we insisted that it would take at least two hours for our visit. I was scheduled to have a lot of tests done, after all.
The driver insisted, “No! I’ll wait, it’s no problem!”. He exchanged numbers with my sister and we entered the hospital/airport/mega shopping mall. I’m kidding, of course, but seriously the building was so very huge! And the hospital has its own underground rail system (a “subway” for my US readers, or a “tube” for my UK readers).
I was told that people from around the world visit the Mayo Clinic in Minnesota and I don’t doubt it. It was a lot crowded and I had to convince myself to not freak out, due to my anxiety disorder. However, I kept telling myself in my head, over and over again, “I’m here to gain my eyesight back. This is important. Calm down and keep breathing!”.
It did help that everyone was so kind, greeted each other and myself politely, and there were many smiles to be counted. I didn’t have a panic attack and managed to stay calm, which I am very proud of. ^_^
The tests took forever, two and a half hours, because my eyes are worse off than I had hoped. The technicians had a difficult time getting my eyes to register on their machines, although I was highly fascinated by the technology and the thermal images of my eyes.
The poor driver was still waiting for us and my sister had to inform him that he would have to wait a bit longer still. He insisted on waiting for us, even though I hadn’t yet met with the eye specialist for my final diagnosis and treatment options.
The doctor’s assistant asked me of when I was first diagnosed with Keratoconus and I decided to be completely honest in my answer. I was first diagnosed in Philadelphia, thirteen years ago, but I didn’t believe the diagnosis. I was age 22 and foolish, with the attitude that I would get a second opinion, which I never did.
Then I moved to Minnesota, three years ago, still believing that I had only needed new glasses, and I was diagnosed with Keratoconus again. At that point, I could no longer be in denial of it, as my eyesight had became so very dismal.
In mentioning that I had originally lived in Philadelphia to the doctor’s assistant, she must have told him, as he entered the room full of cheer and excited. My doctor is also a native of my old city! Furthermore, Dr. Leo Maguire specializes directly in Keratoconus and performs the surgeries needed to correct it.
TLDR: The bad news is, that my disease is in the end stages, meaning that Intacts and RGP lenses are no longer an option for me. My only option is Corneal Transplant, which requires more recovery time and care.
The good news is, that I’ve been placed to the top of the donor list and my surgery is scheduled for February 2nd, 2016! My left eye will be repaired first and I must wait six month for the second eye. However, it’s common for most patients to be satisfied with excellent vision in one eye and be done with it. I may just let my right eye stay as it is, we shall see! Yes, that’s a bad eye-pun. =p
Doctor Maguire explained that I will notice an improvement in my spacial vision immediately after the surgery, which means I will no longer walk into walls or stumble down stairs! Whoo-hoo!
However, it will take two – three months before I am able to read on my own again, to write my science notes, and to cook safely on my own. That means, I’ll have to keep my screen-reader (Rupert) for a little longer.
I don’t mind it, as I’ve grown attached to Rupert’s chipper voice! I may miss him, after my left eye improves from the surgery. Although… I will NOT miss the glitch of Rupert falling into a loop of, “main menu” or “video ad is playing”, until I hit the “Crtl” button for him to stop! Otherwise, he’s been a very helpful companion these past months.
The cab driver waited for us for us at the hospital three and a half hours! We were so grateful for his kindness that we gave him a hefty tip. We will call on him specifically for this journey, as I’ll have to visit the Mayo Clinic often in 2016.
Corneal transplant requires more after-care, like removal of stitches and monitoring that my body doesn’t reject the transplant. Although, Dr. Maguire has assured me that the rate of rejection is very low, and the visits are just cautionary.
I am writing this very long post (my longest ever!) as a cautionary tale for others with Keratoconus. If you have the opportunity to choose Intacts or other eye procedures in the early stages of your disease, just DO IT! It’s unwise to wait, as the disease will progress to the point that your only option is corneal transplant.
CXL is almost useless, as it only prevents further damage but doesn’t correct the damage that is already done. It’s only a good option, if you receive it at the very beginning stages of the disease, when your vision can still be corrected with RPG lenses or high prescription glasses. In the US, CXL is not FDA approved and not covered by insurance, so this procedure can be a lot expensive for low income individuals.
Intacts Corneal Transplants do correct the damage and is covered by most insurance companies, but it works for those who are in the beginning to moderate stages of the disease.
Corneal Transplant corrects the damage more so than Intacts, but a patient must be at the very end stages of the disease to qualify for the donor’s list. It is covered by most insurance companies, however the recovery time and after-care is much longer than Intacts or CXL.
In spite of it all, I feel happy and lucky. I will get to see again in the spring of 2016 and gain my freedom back! It will be a tough journey ahead, but I am determined!
And, because my insurance will pay for my surgery fully, I am left with two thousand dollars that I had painstakingly saved over the last two years. I plan to go on a “shopping spree” with five hundred (mostly to buy all of the science gear that I always wanted!) and the rest I’ll save for a “rainy day” or any post-operation needs.
I will have to wear an eye-patch for a while, after the surgery, but I look forward to being a pirate! Yo ho ho and a bottle of rum! Ugh… I hate rum. lol, ;(u_u)>
Thanks for reading, as always! And happy New Years! ^_^v