Eyeballs… funny little things, aren’t they?
So I am blind in one eye. In my early 20’s I noticed a slight blurriness in my vision which I had checked of course. After a series of tests it was revealed that I had a condition called “kerataconus“, aka. “conical cornea”. A condition where the cornea (i.e.: your “focusing lens”) is deformed and elongates into a cone-shape, (hence the name I guess). The resulting vision is similar to the common astigmatism which affects 1 in 3 people, but significantly more pronounced. Within a year I went from “I need glasses” to “whoa I’m blind”. (See example 👉)
The solution to this condition is a “corneal transplant“. In layman’s terms, the affected cornea is surgically removed and replaced with a compatible donor cornea. Seems simple enough, right? Not so. A corneal transplant does not mean immediate, nor permanent correction. Instead it means “partial correction” and a minimum 12 months of regular weekly and bi-weekly hospital visits to ensure there are no problems, of which numerous can arise.
In 2014 when I had my aneurysm it caused a hemorrhage in my brain which leaked blood into my (good) eye, obstructing the vision and causing it to go blind as well. I was in the PA Hospital for roughly four and a half months without sight*.
Due to the lengthy time in hospital and the little information they provided to my family, my sister Wendy flew up from Sydney to affect a voluntarily dischargement. Wendy and I then drove (she drove, I was blind 😜) down to Sydney so I could stay with her and commence rehabilitation at the Royal Rehab centre in Ryde (ironically, Royal Rehab is a private rehab centre that isn’t cheap, but public patients are accepted by application). While at the hospital Wendy received the call that I was accepted and was to attend my first day four days later. She also later arranged for corrective laser eye surgery to clear the blood from aneurysm-affected eye, which it did so after a couple of days recovery.
I was now back to being a “seeing person” again. The ophthalmologist who performed the procedure told me that I will likely need/want to get it redone in 5 or so years as I will notice it starting to “cloud over”. That was 9 years ago and there is indeed a cloudiness, but it’s not necessarily to an extreme level. I’m living with it.
Fast forward to 2022, I am back in Queensland and doing a routine eye test to renew my regular prescription and the optometrist gave particular attention to my keratoconus. I told him not to worry about that eye, I just need to renew the script for my good eye, but it turned out he was aware of my particular condition and knowledgeable of corrective procedures. When I mentioned that I knew of something could be done but the prohibitive costs involved prevented me from pursuing that option. I mistakenly thought it was a ≈100k procedure to which he politely informed me that it is more around 5-15k mark, BUT that it is also available on the public health system. “Would you like me to put you on the waiting list?”
Roughly a year later I received the call (which was ironically organised through the PA Hospital, ie: my old “home” for 4+ months!)
My ticket had come up, the preliminary procedures were booked and I needed to procure the assistance of an escort (ie: a friend or family member etc.) as my vision will be compromised after the procedure.
My friend Henry was escort and drove me to the hospital where I endured hours of slow and laborious eye drops every few minutes to soften the cornea in preparation for the transplant. It made the eye itself incredibly tender and raw. Sunlight was unbearable and it was not a pleasant experience at all. Henry picked me up and drove me home where I hibernated until I could handle the light again. I went back the next day and they were happy and the results.
I was booked in for March 20, 2020.
At the age of 79, Mum passed away… 4 days prior on March 18, 2022.
My solo mother who worked full-time to feed, house and put me through school and raised me alone… was gone.
With this sudden news I could not go through with the procedure, so when I passed it on to Emily and briefly mentioned my pending procedure, she contacted the hospital on my behalf to postpone/cancel the procedure.
Fast forward to now. I recently went through the identical scenario; routine eye check, tell my story and am put on “the list” again. The appointment to undergo this procedure again was today, however this time was a bit different. It was Mater Hospital this time. I started the rounds of routine preliminary checks and was ushered from room to room where I gazed into the myriad of large objects and instruments, clicking buttons at visible lights and watching for random dots (visual field testing). At the very end I spoke to the final doctor/ophthalmologist with extraordinary knowledge about my particular condition and a somewhat sobering and relieving conclusion.
Don’t get the transplant.
At least, not while I do still technically have one functioning eye. I’m not 100% “blind” per se (my words, not his). He was very thorough when explaining my options and the decision to not proceed was mine. I have agreed to be called in 4-6 months time for a routine review. I can consider the procedure then I guess. He later handed a piece of paper two contact names that I can explore further should I choose to.****
Long story short, I’ve come home rather relieved not to be in pain from undergoing the first phase of preparations for a corneal transplant like I was 18 months prior, with the nightmarish terror of knowing that tomorrow my cornea was going to be transplanted and a year+ of regular routine visits back to the hospital and the knowledge in the back of my mind that one day, I might need to go through the whole procedure again.
I’m sick of hospitals. Time to relax… at least for now.
And so ends another chapter in the ongoing saga that is my life. Thanks for checking in! ☺️
(*So very sorry but I could not actually see any of you who visited – but don’t for a second think it wasn’t appreciated!)
(**Emphasis by me, obvs… 😏)
(***I called it my Cyber Eye)
(****I might write about those later, but given how infrequently I do write here… don’t bank on it 😏)