Diabetic Retinopathy: Seeing Is Believing

Welcome back! Ready to be terrified? Oh, you're not? That's a shame. I have little else on the menu but terror. Maybe you'll get a taste for it as I go on.

I know, I know. "Don't quit my day job." But thanks to diabetes and a few other issues, I'm disabled, so I can't quit my day job. So nyah! 😝

Now where was I in my retinopathy story? ~ mutters while reading ~ Peroxide... eye doctor... puke test... early detection... ~ speaks up ~ Right. I'd started going blind. Slowly. Very slowly. Very, VERY slowly. And somehow I managed to subconsciously dismiss the seriousness of my retinopathy. As a result, I still wasn't taking very good care of myself. Cheating on my diet, late insulin doses, not checking my glucose at all. I think if my vision were worsening rapidly, I'd have taken it more seriously early on. 

But by the time I started doing that, it was too late. The damage was done. I didn't need to see an ophthalmologist to hear about the troubles brewing in my eyes. Any optometrist, who I'd be seeing just for new glasses, could see the damage without dilating my pupils. 

My every visit to an ophthalmologist filled me with fear. I didn’t want to know how far my eye disease had progressed. I didn’t want to face it. The hours that would follow such doctor visits are filled with tears of anguish and guilt. I did this to me. Not some nameless deity, not family, not friends. Me! The fear of losing the precious gift of sight was terrifying. There is a beauty to the human body, a kind of wonder that such a complex machine can exist and function the way it does. Seeing a human being grow from child to adolescent to adult is wondrous to me. Watching the miracle of the seasons change… Or to see such marvels as the Red Rocks in Arizona… The beauty of the rising and setting sun…

Sickeningly sentimental? Maybe. But wait until it starts happening to you and see where your mind starts to wander.

Remaining watchful eventually clued us in on the next step in keeping my retinopathy managed, which was lasers to cauterize any hemorrhaging in my eyes. Not "pew-pew Star Wars" lasers. Silent beams of light that can hurt when concentrated in a single part of the eye.

For quite some time, I'd be able to face these treatments with a degree of humor. One doctor even offered to make the Star Wars sound effects after I brought it up. But then something unrelated to diabetes put the nail in the psychological coffin labeled "post traumatic stress disorder." Suddenly the laser treatments were akin to actual torture. 

One of the doctors I saw would have a nurse stand behind me with a hand gently resting on the back of my head so I wouldn't pull back from the laser. There was absolutely nothing aggressive in their behavior. But my subconscious translated the entire experience into full-blown terror. It translated the entire scene into me being held against my will. I'd find myself crying uncontrollably after each treatment, and it once got so bad that I tossed my cookies.

Eventually, I graduated from lasers to... You ready for this? INJECTIONS! You're saying to yourself, "Rob, we're diabetics. Injections are what we do." And I get it. No big deal... until I tell you that they're injections made directly into the eyes.

May all of the gods in every existing pantheon bless Dr. Roy! (Not his proper name.) His voice was so calming that I flat-out told him it could be used as a sedative. Seriously, the man could tell you that you have five minutes left to live and you'd be perfectly okay with it. So when he suggested injections of Avastin, I agreed without a single complaint. He said he was going to inject my eye and I was fine with that!!!

Avastin was FDA approved 16 February 2004 as a treatment to starve malignant tumors, thereby shrinking them. (It's WAY too technical.) I can't find an exact date, but Avastin was approved for off-label use in 2005 for vascular eye diseases because it helped restrict neovascularization. (Again, too technical, but that's what I got from my research. Keep in mind I'm NOT a doctor!)

So how does one get injected in the eye? This is how it happened for me. I'd be given anesthetic drops in the affected eye, and the area around the eye was cleaned with iodine. Dr. Roy would come in, tell me to look up and away from him, tell me to stay VERY STILL, use an applicator to put a tiny dot of iodine directly on my eyeball, and then inject that site. Scary as heck. Easy as pie. The worst part...? If the exterior of my eye was cleaned a bit overzealously and more iodine wound up in my eye. Despite the anesthetic, it would BURN! 

Now you might be wondering what prompted the need for these injections. Well, when those weakened vessels I mentioned last post would start to bleed inside my eye, the blood would get suspended in the vitreous gel of the eye, creating a kind of psychedelic black spot in my vision. "Psychedelic" because I always saw it in 3-D when I'd concentrate on it.

That's the worst of it, right? A couple of shots a year in the eyes. Diabetics do shots. No big deal.

Until the shots don't work. That's what happened to my left eye. Despite receiving several injections over a six-month period, it was still hemorrhaging, obscuring part of my vision. The time had come for a vitrectomy.

I joke about it today. Because it sounds similar to a different surgical procedure men can have, I'll tell people, "I can't get you pregnant by looking at you." It usually gets a laugh. But when it was happening...? 

Let's see how funny you find the procedure. It all takes place in a hospital operating room, so there's all of the fun that comes with hospital pre-op. Sedation is given, but you are not knocked out! They need to awake so you can keep your eye from moving around. They give you juuuust enough sedation to keep you from freaking out completely. They do a block on the optic nerve, which means a facial injection below the eye. Next - and now we're really having fun! - they clamp your eye open. After ensuring you cannot blink, the doctor instructs you to look up and away, just like when you received Avastin injections... except you're about to hold your eye in this position for 30 to 45 minutes. Every now and again a nurse lubricates your eye to keep it from drying out. Meanwhile, the doctor has poked a few instruments into your eye and is removing the vitreous gel from the middle of your eye, replacing it with water. They're also carefully peeling away problematic layers of neovascularization. So far, so good... until you start calmly saying "Ow" to let the doctor know your eye isn't numb enough. Remember that they have to work under certain safely established parameters. "The patient gets X-amount of local to numb the eye." But because every patient is different, that safely established dose may not be enough. Thus, every time I calmly said "ow," I was given more local. And you have to say it calmly because the very last thing you want to do is startle the doctor delicately working on your eye. 

If you have to endure this procedure, it will be the longest hour you've ever experienced. You know how time becomes distorted during different experiences. I usually use this as an example: The length of a minute increases exponentially when you're on the wrong side of the bathroom door and really have to go while it's occupied. 

Wow, this is long. I usually cut it off now, but sharing misery and terror is becoming one of my favorite hobbies. 😉 You're welcome.

Post-op, my eye wasn't completely filled with water. There was juuuust enough air in there for a bubble to reside... at the BOTTOM of my vision. Your visual input is actually upside down and the brain flips the image so you're not living in a perpetually upside down fever dream. But that air bubble existed in the part of my eye before the point where my brain could rectify what I was seeing. As a result, the air bubble at the top of my eye was always at the bottom of my visual field.

Has any of this shocked you? Scared you? Made you think, Maybe I should monitor my diabetes a bit better? Well then, allow my to put a cherry on top of this crap sundae.

Without any vitreous gel in the center of my left eye to suspend the blood if I started bleeding in there, the blood would simply permeate the center of my eye. And that's exactly what happened about a month after the surgery. One minute I was using my eyes quite normally, and the next the vision in my left eye started disappearing. I was completely blind in my left eye in about 15 minutes. At best, I could only distinguish between light and dark.

Okay, okay. Relax. Breathe. It's terrifying, but still fixable. (That's for you. There was no way I was thinking that calmly as my ability to see faded.)

I called my doctor's office and reported what happened. He was able to see me the next day and give me another injection of Avastin. It took a few weeks, but my vision eventually cleared up. Miraculously, I haven't had a repeat of that incident.

Other optical issues sprung up almost immediately. Fluctuating blood sugars can lead to other structural changes in the eye like... Oh, I dunno... Let's say cataracts. Dr. Roy was amazed at how fast I started developing cataracts in BOTH eye post-vitrectomy, stating that it was like my eyes were sprayed with Miracle Gro. Alas, that wasn't something he handled. I had to go to a completely different eye clinic. They removed the lens of my left eye and replaced it with a generic lens. Two weeks later, they did the right eye. Those procedures were so fast that I joked they could have done them as a drive-thru service.

Because I received generic lenses instead of custom lenses, I was forced to get trifocals for my next pair of glasses. But thanks to the vitrectomy, my water-filled eye absolutely refuses to cooperate with the new lens enough to provide me with 20/20 vision. The best an optometrist can do for me is 20/30. With most daily activities, that's not a big deal. But for an avid reader like me, it's a pain in the tuchas because I can only read using one eye.

And that's where I am in terms of diabetic retinopathy today. Some of you may be thinking, That's not so bad. You got everything fixed. Yeah, but... What if I experience another bleed in my left eye and an injection doesn't fix it? What if I have to have another vitrectomy, leaving both eyes filled with water... and then I have fresh bleeds in BOTH eyes? In no way am I prepared for the world to disappear.

Okay, I think that's more than enough for this post, but I need a better ending. Something light. I mean, we're talking about eyes. Maybe something visually appealing, like a scantily clad young woman. Yes, that would be absolutely perfect. Here you go:

A T-rex in an ugly Christmas sweater?!?

Honestly don't know how I screwed that up.

Must be issues with my eyes. 😉