Regaining Vision: New Cornea, Part Two

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. You can find Part One here.

The Surgery

You can find fairly detailed accounts of the actual corneal transplant procedure online; much like any other surgery or hospital experience what stands out is that there tends to be a lot of waiting, with long periods of inactivity and sudden flurries of intense motion. Perhaps that’s why once we don one of those gowns we are called “patients”?

I arrive at the hospital in the late morning accompanied by a dear friend who has not only volunteered but insisted on being my support for the experience. After finding our way through the maze of a large multi-faceted hospital complex I am assigned to a room and a bed; my stay will be brief though as this transplant is a day surgery.

The nurses are invariably kind and seem amused by the running patter between my friend and I; the truth is that neither of us is particularly reverent and can find any situation amusing, even a hospital room pre-surgery.

My specialist has explained the procedure well; it will take place under a general anaesthetic which is a relief to me as my last two eye surgeries were done with local anesthetic and I found the entire experience rather traumatic.

And of course my quirky sense of occasion must be met, and so along with my gown I wear socks emblazoned with Wonder Woman, which in the end is met with much merriment from everyone who sees them, from nurses to the OR staff.

I wear them because they make me smile; but I wear them too because of the implicit message. I can do this, they say. I’m Wonder Woman.

When the time finally comes to be wheeled down to the OR, my friend departs, as she will be called when I am ready to go. I watch her walk down the hallway as I am on the gurney behind her; she departs down one elevator into the world while I am taken down another into the pre-surgical area.

This is where the real work begins. The placement of an IV, the donning of a blue surgical cap, and once again I wait. A quick visit from my specialist reveals that the cornea I’m about to receive is, in his words, perfect and beautiful.

A perfect beautiful cornea.

It is there in the pre-surgical area, lying on a gurney, waiting for my turn in the OR, that I take a moment to think about the gift I am about to receive. Tears fill my eyes, and then suddenly a flurry of activity surrounds me. A charming Scottish nurse who sees the cat scratches on my arm and comments that I must own dragons, not cats; a stunningly beautiful anesthesiologist who makes a surgical cap and scrubs seem fashionable; my own corneal specialist quietly making jokes as I arrive in the operating room. Just before they begin, the nurse asks what I do; when I tell them I am a writer she laughs and says they will try to give me something to write about; and so they have.

An injection in the IV, a mask over my mouth, a voice saying night-night, and I am out.

I wake a couple of hours later in the recovery room, surrounded by several nurses chatting; as soon as they realize I am awake I am wheeled back to my room. I feel groggy, but okay; the worst part is my sore throat from being intubated. My left eye is covered with a patch but I feel no pain; a few hours in the hospital room and I am released for the night, to return to see my specialist in the morning for the big moment: the removal of my patch, and using my new cornea for the first time.

The Reveal

The next morning my dear friend and I stop at Starbucks for coffee; and then we are off to the office I have been visiting regularly for the past almost four years. This time, though, is different.

When we are called into the examining room I am nervous – and excited. I don’t know what to expect, but I know I expect something. The ability to see, even just a little bit; nothing huge as I know it takes time for vision to adjust with a new cornea.

The assistant enters the room and removes the patch…and then, after years of waiting, I see…

Nothing. A dark grey mist fills my left eye, and I feel at first confused. Perhaps this is normal, I think, although it does not match what I have read and heard from others.

When my specialist arrives, he examines my eye, and then gently explains that during the surgery, hidden behind all the glue, he discovered a large cataract; and to make matters a bit worse, my pupil has attached to the cataract and is now tightly constricted.

A second surgery will be needed in the future.

And until then, no vision.

The disappointment washes over me. I balance it with the fact that for the first time in years, despite the surgery I have just gone through, my eye does not hurt. And so I say to him that even if this is it, even if it is just a blind eye with no pain, I am okay with this outcome.

His words?

“I think we should aim higher.”

And so we will.

The Realization

It took a few days for it to really hit me. It was about three days post-surgery when I allowed myself to really feel anger, sadness and disappointment.

Have you ever received a Christmas gift and while it was wonderful and fantastic, it wasn’t quite what you wanted? You don’t want to seem ungrateful, as it is a really great gift, but you thought you were getting something else; and for a moment you must manage this disappointed feeling as you let go of what you wanted and learn to celebrate what you have received.

Not all of this was directed at my eye, but rather at myself. Over time I have learned to minimize my expectations and instead accept life as it comes; but this time I had allowed hope to transform into expectation, only to have it crushed.

I had come to believe I would have vision again, an “oh my god I can see” moment, and I was devastated to have been robbed of it; but the truth was this had never been guaranteed. This was just the ending I had wanted; but I am old enough and finally wise enough to know that things rarely end the way we want them to.

One cannot live in a state of anger, sadness and disappointment, though. As I have done so often before, I picked myself up, brushed myself off, looked at my new cornea in a mirror and admired the tiny sutures holding it in place and remember the words of a friend when they saw it for the first time:

“This is a miracle.”

And so it is.

The Recovery

It is astonishing how our body works to heal us. Ten days post surgery and my new cornea is settling in nicely. Truth be told, the worst part was likely the recovery from the general anaesthetic. My eye has continued to show daily improvements, and for the first time in years I am pain-free.

And there, under my left eyelid, is a blue eye, the one I inherited from my parents, but now with a “windshield” cornea gifted from a total stranger.

I think it is beautiful.

Regaining My Vision

What is vision? It is the ability to see, but it goes beyond the physical.

Over the past few years as I lost my vision I discovered an ability to truly see; to see what matters, to understand the uncertainty and fragility of life, to celebrate the small things, to focus on the positive and to see beyond what our eyes can process.

Through this corneal transplant I did not regain sight in my left eye, although we still have hope for that in the future after cataract surgery.

But my vision was sharpened once again.

We can allow our experiences to break us or build us; we can decide to give up hope or we can find it renewed every where we look.

I have hope. I will always have hope, because I have learned it is who I am. I am unable to view the world in any way but through a lens of hope; and so despite still being blind in my left eye, my vision is crystal clear.

Much of this hope is thanks to the generous gift from a stranger; it is hard to put into words what one feels as the recipient of a transplant, but in the pre-surgical room as I waited to be wheeled into the OR I did my best to give it voice.

There are a few things that have come from this experience; some have asked why I am so very open and honest about it, and the truth is because I want people to consider organ donation. I tell everyone I know about the transplant because I want them to see that organ donation affects people they know; and I want them to sign donor cards, register with their organ donor registry and let their family know their wishes.

I hope that through my experience they understand the impact they can have on the life of someone else; even a total stranger and even after their time on this earth might be done.

What would I say to my donor? These are the things I thought just before my surgery, and they are even more true now as this beautiful, perfect cornea heals. There are moments when I still pause, overcome that at this very moment a tiny piece of another human being is stitched onto me; it is in indeed a miracle. But it’s more than a miracle – it’s a miracle performed by a person, the one who gave me this gift. And these are the words I thought as I waited to accept it:

Dear Donor,

I don’t know your gender, or your age. I don’t know what you did for a living, if you had a family or how you died.

And I don’t know if you were what we would consider a “good” or a “bad” person.

But none of that matters, because what you are is a hero.

Today for a brief moment I shared an elevator with another patient, and it turned out she was also receiving a new cornea. And I knew that in that tiny elevator were two people whose lives you were about to change with your precious gift. Two people. And very possibly many more.

Thank you doesn’t seem nearly enough for this kind of gift, so instead I will make a commitment to you, dearest donor.

I will take good care of your precious gift.

I will use it to view the world through a lens of optimism, kindness, positivity and hope.

And I will never forget that you chose to give this gift even though you would never be there to see someone receive it.

I don’t know what you’ve seen in your life, dearest donor. I hope whatever you saw, it was beautiful; and I want you to know I plan to continue to use your perfect, beautiful cornea to see that beauty as often as possible. 

Thank you, dearest donor. Thank you for the gift of hope.


New Cornea, Who Dis? Part One

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.

The Beginning

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.

The Backstory

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.

The Decision

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 Delay

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.

The Call

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.