When I began to formulate the telling of this tale, I realized I wouldn’t be able to truly do the story justice in one post. As I prepared for my own journey through this experience, I found myself doing long internet searches not for medical articles but rather stories from those who had traveled a similar path; and so I hope my story perhaps helps someone else who is googling late into the night, searching words like “corneal transplant”. I also hope perhaps it opens a dialogue on organ and tissue donation, a topic I didn’t give much thought until the day I learned I would be the recipient of a gift from a total stranger: a cornea. This is my story; and the story of two corneas.
There was something in my eye. Like an eyelash, but sharper, pointier. I scan my painful eye with a flashlight and can find nothing; my then-husband looks but also sees nothing. My daughter is a newborn, 8 weeks old, and life is a blur of breastfeeding and diaper changes and laundry. I am exhausted; but after 24 hours the something-in-my-eye feeling has not subsided and so I head for the family physician.
It is a small town; there are no eye specialists and even the optometrist who doles out prescriptions for glasses only visits on a monthly basis. A cursory exam from the physician, who is not my own but the one on call, a diagnosis of conjunctivitis and a hasty prescription and I am out the door to deal with my weeping eye and shrieking baby.
A few days later and the eye has not improved but worsened; now it is shockingly red and so light sensitive I cannot be outside without significant pain. Despite my general new-parent exhaustion, I begin to realize something more is going on. I decide to return to the clinic the next day.
Then, I wake up the following morning and it is like I am inside a snow globe. Despite it being early December and snow gently falling outside my northern Ontario home, this particular snow storm is inside my left eye, and I see through what appears to be a drifting of heavy grey snowflakes as they cross my vision.
The optometrist is in town. I am on my way to his office, and what I learn there will forever change my life. It was not conjunctivitis, but rather herpes simplex Type 1 that has attacked my left eye. The delay in diagnosis means that my cornea has already suffered significant scarring; the pressure inside my eye is shockingly high, and I risk damage to my optic nerve. All the inflammation has triggered iritis, a painful condition which further risks my vision.
A quick view through his lamp, and the optometrist has me scheduled with an ophthalmologist in Winnipeg, over seven hours away. This is now an emergency, and my vision is in peril. We begin the long drive, never anticipating how long this trip will truly be.
I don’t know it then, of course, but these are the early days in an almost nineteen year journey with a chronic eye disease.
It is probably better that I did not know then what I know now.
From that fateful day in 1999 to now has been quite the journey; anyone who has suffered a chronic illness for any length of time will understand this well.
The last two decades have been littered with appointments with specialists; a variety of medications; flares of the original virus and of the ensuing iritis; an emergency surgery designed to address the glaucoma in my eye; and just under four years ago waking up with a startling bad headache and a left eye that seemed to be weeping uncontrollably.
Another visit to a local optometrist; another quick view with his lamp and another emergency trip as he discovers, for the first time in his forty years in practice, that he is seeing a perforated cornea which is slowly leaking fluid and again risking what little vision I have left (now blurred at best due to the scarring of the cornea).
In Edmonton his diagnosis is confirmed; and once again I find myself in the operating room at the Royal Alexandra Hospital, this time to have medical grade crazy glue inserted in my eye to stop the leak and preserve my eye.
I leave the hospital with a bandage contact lens and glue in my left eye, now totally blind in that eye due to placement of the glue; and I begin life as a person with monocular vision, once again unsure what the future might hold.
I am so fortunate to have a corneal specialist who is one of the best in the province; perhaps even the country. Over the course of the last four years, he and I have watched that glue in my eye to make sure it held the seal, like the patch on a rubber tire; and finally, we began to discuss the options.
Even though I could not see because of the glue, I retained light sensitivity, meaning I was not entirely blind in my left eye despite all I had experienced. And so, because the glue could not stay in place forever, a decision needed to be made. My eye, which had now had glue in place for almost four years, was uncomfortable most days. Some days it was quite frankly painful. It was often red, sensitive to everything and I had tired of the constant questions about why my eye looked “sore”. It looked like there was a glob of glue in my eye, because there was.
It was time to make a choice.
The choices were few. In fact, only two.
I could opt to have my eye entirely removed, thus closing the entire saga but also of course ending any hope of ever regaining sight; or I could opt for a corneal transplant, with a potential for vision.
Neither option seems particularly appealing; the evening after the appointment when we discussed it was long and dark one as I contemplated the options. There is a book by Douglas Adams I quite like, not so much for the content as for the title; and I call those moments of my life “the long dark tea times of the soul”. That night was a particularly long and dark tea time.
After a sleepless night googling words like “enucleation”, I call his office.
In this case, hope was better than closure.
I opt for a transplant. He says he expects there’s an 85% chance of regaining some vision; reason enough for hope indeed. And so a small seed of hope, one that was always there, began to take root.
The wait list for corneal transplants in our province has decreased dramatically in recent years. Thanks to the importation of corneas, the wait is now 6-12 months as opposed to the 2-3 years it once was. One can only imagine how increased donation rates would lessen this even more; in my case though it took a bit longer as I opted to delay it slightly when I took a new job. As my case was not considered urgent and my eye was stable, this was a reasonable course. This spring, though, I told my specialist during a routine visit that I was ready, and I was hovering at the top of the list. His advice?
Keep my bags packed. It would be soon.
It is a Friday afternoon, around 4:30 pm. I am just getting ready to leave my office and glance at my cell phone. I’ve missed a call just moments before, and I recognize the number on the call display immediately.
It’s hard to capture my feelings in that moment, as I know what the call means. I am excited, and afraid. I’ve come so far on this journey and now, finally, after almost four years of blindness in my left eye, I have come to hope – maybe even believe – that I will have vision again. Maybe not perfect vision, but maybe enough that I will again have the ability to see depth, where the world does not seem flat, where depth perception saves me from the perils of uneven stairs and sidewalks.
I dial the number; there is a cornea. It’s mine if I want it. And I do.
On Tuesday I’ll meet my new cornea in the operating room. And we will become very, very attached.
I am almost overcome; first I attend to the practicalities, the people who need to be notified and the things that need to be done.
As the weekend passes I find myself more introspective, and as the surgery draws closer more hopeful.
Maybe, just maybe, this journey is finally reaching a destination.
What I Learned During Part One of the Journey
- A unilateral sore, red eye should always be examined by an ophthalmologist (or at least an optometrist who can refer). Anything that affects only one eye is unlikely to be conjunctivitis or allergies, and may have a more sinister cause. Regular physicians are not trained or experienced in diagnosing eye disease; and to delay diagnosis is to take a significant risk with a tender body structure that is easily damaged.
- Even if you’ve never experienced a cold sore, HSV-1 may be dormant in your body (it is in the vast majority of adults) and in some when it activates it takes a wrong turn in the nervous system and heads to the cornea. If you do experience cold sores, practice good hygiene and never touch your eyes after touching your lips as you can inoculate the virus directly into your eye by doing so. HSV-1 is a leading cause of blindness; and since my diagnosis I have met dozens of other people who have experienced an HSV-1 infection in their cornea. It may be unusual, but it is not rare.
- One rarely thinks about organ donation until one needs an organ. In my case, it’s a quality of life difference; for others, it’s simply the difference between life – and death. Please sign your donor card. And tell your family your wishes, too.
- Often when you have a chronic illness people talk about how strong or brave you are; to be honest there aren’t really a lot of other options. And no matter your strength or bravery, chronic illness sucks. Being in pain sucks. Constant visits to doctors sucks. Uncertainty sucks. In fact, everything about it pretty much sucks, but what really sucks is there isn’t a damn thing you can do except – you guessed – face each new challenge with as much strength and bravery as you can muster.
- Sometimes, you just learn to fake being strong and brave. And that’s okay, too.
- Never google the word enucleation. Just trust me on this one. Seriously.