Most of us with diabetes live in fear of the dreaded diabetes complications that could someday strike — especially those of us diagnosed as kids or teens, who’ve had many years for possible complications to develop.
I personally was diagnosed more than three decades ago as a young child, and for as long as I can remember, I’ve been hearing about the stats telling us that we PWDs (people with diabetes) are at high risk of developing eye disease. According to the National Eye Institute, almost 8 million PWDs are living with some version of diabetic retinopathy or macular edema.
Those stats hit home a couple of months ago, when my eye specialist told me that my own long-diagnosed retinopathy had progressed to the point of requiring laser treatment.
Yep, the time had come for my first-ever official eye treatment for retinopathy.
Facing My Worst Diabetes Fears
Of course, hearing that freaked me out beyond anything.
Because I’d been dreading it since my diagnosis at 5 years old, and all through my teens when a hopelessness set in during those rebellious years — even into my early 20s, and especially starting in 2007 when the word “retinopathy” finally became a personal reality for me. In the past dozen years, it’s always been very mild retinopathy that hasn’t required any attention beyond just best-possible blood sugar management. But the fear of something bigger has always been there, lurking.
So earlier this summer when I heard “lasers” because my left eye (only) had crossed some retinopathy-related threshold, my heart started beating rapidly and the tears began to swell. Even though the eye doctor assured me it would be “very routine,” my mind couldn’t process the news calmly.
There is an actual term in our circles now called “Fear of Hypoglycemia” or FOH, that’s often used in studying and describing the effects many people experience dreading low blood sugars and constantly adjusting their diabetes management in a frantic effort to avoid those Lows. I would counter that by suggesting there also exists Fear of Complications (FOC?), though I’ve never heard the term used officially or included in research. Maybe it should be.
Upon being informed of my progressing retinopathy and the need for laser treatment, FOC immediately clouded all rational thought. My eye doctor tried to reassure me, as did others who’ve been through this type of laser treatment for diabetes-related retinopathy. “Calm down – Take it easy,” they advised. “It’ll be all right.”
And yet, I wasn’t able to. Going into the procedure at the end of July, my nerves were all afray. I barely slept the night before. The drive into the eye clinic was excruciating.
My Retinopathy Laser Treatment Experience
In fact, the actual procedure wasn’t scary or painful at all. It turned out to be less inconvenient even than a normal diabetes eye exam where you have to keep your eyes open while staring into ridiculously bright lights.
The procedure, on my affected left eye only, went something like this:
- First, numbing drops and drops for dilation
- An X marked the spot over my left eye
- I had to rest my chin on a laser machine and look into the light at a little dot while the doctor examined the insides of my eye. Surprisingly, this wasn’t scary, as it was no different than any other machine that I’ve had to rest my chin on for routine eye exams in the past
- 30 bright flashes came that were — as my eye doc had explained — about the same as seeing rapid camera flashes back-to-back. This part took ~20 minutes total
- The whole procedure from start to finish was only ~45 minutes, with half that time devoted to sitting in a waiting room as my numbing and dilation drops did their job
And that was it! My first-ever experience with retinopathy laser treatment was a breeze. No pain, no big deal.
That’s what my eye specialist had told me going into the procedure, but I didn’t take his word for it. I should’ve listened and trusted him.
In terms of “recovery” afterwards, it was easy-peezy with no vision impact. My left eye just felt dilated. In the following hours we went out for dinner and drinks without any issue (aside from some grimaces when a bright light hit me at the wrong angle). Over the next few days, my left eye was a bit itchy and there were a handful of moments of minor discomfort from glaring at my bright laptop screen. But that was it!
Also, and here’s the big holy moly of awesome sauce: My insurance paid for 95% of the total $1,500 cost for this treatment! Which meant my co-pay and co-insurance amounts were quite small. That was a huge relief, all by itself.
It was also pretty cool that my blood sugars didn’t spike from any of this. In the hour or so before the treatment, I did run a bit high due to the stress and nervousness going into the appointment. But my BG levels only rose to the low 200s, before leveling off and settling back down into the mid-100s within a couple hours. If we hadn’t gone out immediately afterward for apps and drinks, I probably wouldn’t have needed to dose any insulin to correct.
Seeing Hope, Despite Retinopathy
Although no one wants to develop or need treatment for diabetes-related eye disease, I’m obviously hugely relieved over my mostly positive personal experience.
I am also reassured at the current state of affairs in diabetes-related eye health overall. There’s been incredible progress over the years in treatment – from the evolution of lasers (as I’ve now experienced first-hand), to injections that are more effective and not as scary as they once were, and so many new diabetes tech tools that allow for better blood sugar management to help avoid eye complications in the first place.
In addition, research on restoring vision loss has become a huge focal point, with JDRF launching a Moonshot Initiative in 2018, aiming to transform the understanding and tools we have about diabetes-related eye disease, both for prevention and regeneration of sight for affected PWDs. Other exciting work is being done by researchers like Dr. Jennifer Sun at Harvard focused on diabetic retinal disease and developing novel biomarkers to identify and treat this complication.
Take also the FDA approval in early 2019 of Eylea, an injection developed by Regeneron Pharmaceuticals to treat moderately severe to severe retinopathy. This so-called anti-VEGF drug is a key treatment to help prevent worsening eye disease in some PWDs with early forms of retinopathy. It is the only VEGF inhibitor approved with two dosing options for retinopathy, allowing doctors to customize treatment to their patients’ needs. It can be taken every eight weeks following five initial monthly injections, or every four weeks.
In terms of coping with the fear and learning how to live well with diabetes complications, there are patient-led efforts like the Diabetes Empowerment Summit, that allow PWDs to share their experiences.
There’s a lot to be thankful for, even for those of us already experiencing retinopathy.
For that, we can be thankful to live (with diabetes) in the time that we do.