Fear and Loathing of Diabetes Retinopathy Treatment

 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 with type 1 more than three decades ago in 1984 as a young child, and for as long as I can remember, I've been hearing about the stats telling us that we PWDs are at high risk of developing eye disease. According to the National Eye Institute, almost 8 million PWDs are living with some version of diabetes-related retinopathy or macular edema.

Those stats hit home recently when my eye specialist told me that my own long-diagnosed retinopathy had progressed to the point of requiring laser treatment and possible injections into the eye. 

Yep, the time had come for my first-ever official eye treatment for retinopathy.

Facing my worst diabetes fears

Of course, hearing that I needed laser treatment and possibly eye injections freaked me out beyond anything I have ever had to comprehend.

I’d been dreading this news since my diagnosis at 5 years old, through my rebellious teens when hopelessness set in, 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 when I finally heard in the summer of 2019 that lasers were needed because my left eye 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 circle 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 any research. Maybe it should be because I certainly had that fear.

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 calm down — understandably, because I'd never gone through this firsthand. Going into the procedure at the end of July 2019, my nerves were frayed. I barely slept the night before. The drive into the eye clinic was excruciating.

My retinopathy laser treatment

Despite my fear, I went through with it. I discovered, 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 went something like this:

• First, I was given 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.
• Then 30 bright flashes came that was — as my eye doc had explained — about the same as seeing rapid camera flashes back-to-back. This part took about 20 minutes in total.
• The whole procedure from start to finish was only about 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 to and trusted him. 

In terms of "recovery" afterward, it was easy-peasy with no visual 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 percent 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 alone.

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 (blood glucose) levels only rose to the low 200s before leveling off and settling back down into the mid-100s within a couple of 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.

An eye health crisis during COVID-19

I returned to my eye doctor later in 2019 after a few months of recovery time. He informed me that everything was okay, but that the healing was still taking place. He suggested we keep monitoring progress, and we set a follow-up appointment for February 2020.

At that time, he told me the lasers had done their job addressing the hemorrhage in my eye and it had healed.

I would have been relieved if that news hadn't been followed by the announcement that unfortunately, a secondary hemorrhage had popped up in the same eye. This one was more centrally located in the retina, meaning my eye doctor wanted a second opinion from a more seasoned expert in diabetes eye disease. He promptly referred me to someone else, noting that it would be okay to see her within a few weeks to determine if additional laser treatment might be warranted or if I may need eye injections to correct it.

Enter the COVID-19 global pandemic in March 2020.

In my home state of Michigan, we began a governor-ordered shelter-in place period in the middle of March. Of course, my eye clinic closed too, pushing my eye examination out indefinitely, which was unsettling.

Just a couple of weeks later, I started noticing dark, black "floaters" in my right eye — the one that hadn't needed treatment. Cue even more panic from me!

There was a lot of crying because this was truly the first and most noticeable time my vision had actually been impacted as a result of retinopathy.

Determining that my situation could be described as a "critical, vision-impacting emergency," I phoned my original eye doc, who in turned phoned the specialist, who thankfully got me in the next day.

She observed that a small blood vessel had burst, leading to some blood leakage in my retina that was causing the floaters in my field of vision. An injection in my eye was needed.

Experiencing eye injections

There are several diabetes retinopathy eye injection medications available, but my doctor suggested the oldest one on the market: Avastin, which interestingly isn't even approved for diabetes-related retinopathy and macular edema, but was previously used to treat cancer. It's now off-label for PWDs experiencing retinopathy-related vision issues as it can slow or stop the abnormal blood vessel growth.

Avastin is an older large-molecule version of the more recent, smaller-molecule drugs that are approved by the Food and Drug Administration (FDA) to be specifically used in treating diabetes retinopathy. It's a less expensive version that's often effective.

Once again, my treatment began with numbing drops, and then eventually the injection.

Of course, I was terrified by the idea of a scary needle moving toward my eye. But in reality, I barely noticed it since the injection comes from the side of your field of vision. And due to the numbing drops, I felt only a little pinch that lasted a few seconds — finished just as quickly as it had begun.

Later in the day, once the eye drops had worn off, my sight wasn't impacted. There was some minimal burning at times, but overall, it was similar to having some bright light exposure that forced me to close my eye for a moment to adjust and wipe away some tears with a tissue. The blood in my eye eventually dissipated, as the doctor expected it would.

I've since had more injections in both eye, to treat the original issue that surfaced pre-COVID-19, as well as other small issues that have materialized. I've also had a follow-up laser treatments as a sort of "clean up" procedure after injections.

To date, I'm grateful everything went as well as could have. I continue doing my best to keep my BG levels in range as much as possible.

Seeing hope, despite retinopathy

Although no one wants to develop or need treatment for diabetes-related eye disease, I'm obviously hugely relieved about my (mostly) positive 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 and injections that are more effective and not as scary as they once were to new artificial intelligence-driven screening tools.

You also can't overlook the many new diabetes tech tools that allow PWDs to achieve better blood sugar management to help avoid eye complications in the first place.

There are many resources, including the American Diabetes Association's newest Eye Health website. 

In addition, research on restoring vision loss has become a huge focal point, with JDRF launching a Moonshot Initiative in 2018. This aims to transform the understanding and tools we have for diabetes-related eye disease, both for prevention and regeneration of sight for PWDs. Other exciting work is being done by researchers like Dr. Jennifer Sun at Harvard, who is focused on developing novel biomarkers to identify and treat diabetic retinal disease.

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 drug of its kind FDA-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, I can't speak highly enough about peer support. Connecting to others who've gone through these types of treatments has been a saving grace, putting my nerves and mind at ease in the most stressful of times.

That is actually something in which I'm excited to be working with my own medical care team: Resources from PWDs for PWDs about laser and injection treatment once word comes that it's necessary. I'm all for anything to help calm the nerves, even just a bit before facing these experiences for the first time yourself. 

In short, 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.

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Originally written by Michael W. Hoskins and published at DiabetesMine in July 2020