Living with Diabetes: It’s Never One and Done

As a child, I had an obsessive, irrational fear of going blind. At night, I lay in bed and kept opening my eyes every few minutes as I fell asleep to make sure I could still see, searching for outside lights filtering through the curtains of my bedroom window.

On a Sunday morning at 3:00 a.m., just days shy of my 64th birthday, it finally happened. I was watching a Woody Allen movie, September, on cable when a dark curtain suddenly descended over my right eye. I had already been receiving laser treatments for diabetic retinopathy for a couple of years, so I called my retina specialist later that morning, then lived through an agonizing 24 hours until I could see him the following day.

The phrase “see him” had taken on a whole new meaning for me.

The diagnosis-an occluded blood vessel-was hardly reassuring. Emergency laser treatment on the eye followed, and the cloudy veil over my eye eventually lifted. A short time afterward, however, the blood vessel broke again, throwing me into another panic. You have to understand that my right eye is dominant and, as the near-sighted eye, is the one that I rely on for reading and writing. These activities form the core of my professional life and even my leisure time.

Laser treatment on the occluded blood vessel was repeated, along with continued laser treatment on both eyes for the proliferative retinopathy. Now, approximately five years after my original referral to the retina specialist and the repeated treatments for diabetic retinopathy, my eye condition has progressed from diabetic retinopathy to the beginnings of macular degeneration.

My vision varies. It’s never been very good-I have worn glasses since age 11, and my left eye, which is far-sighted, has always resisted correction. I have difficulty tolerating light some days. I often see things through a gauzy, wax-papery haze in bright light, although at night, under artificial illumination, my vision is a bit sharper and clearer.

I was diagnosed with diabetes about 20 years ago, but I suspect that I had undiagnosed diabetes or was at least pre-diabetic long before that. When I woke up one morning in December of 1988 with blurred vision and a constant urge to urinate, I knew what the symptoms meant. I called my primary care physician immediately and began a course of treatment based almost exclusively on oral medication. Over the years, my diabetes resisted control, and eye problems, among other complications, set in, necessitating the laser treatments for the seepage behind my eyes.

Finally, the retina specialist suggested intraocular injections, specifically, three injections of Avastin into each eye, spaced six weeks apart. The drug, whose main use is in the treatment of colon cancer, has been shown to be effective in arresting diabetic eye complications but it has not been approved for this off-label application. I was hesitant, not just because of concerns about the drug, which other sources assured me was safe and effective, but because of squeamishness about having a needle injected into my eyeball.

After putting off the injections for more than a year, I finally relented. Instead of the three injections of Avastin, however, I opted for another treatment-a single injection into each eye of the steroid kenilog, spaced a week apart. The office procedure is a simple one, with infection probably the greatest risk. The eye is dilated by the doctor, and the injection site in the outer corner of the eye is numbed over 15 minutes. I was aware of everything that went on during the procedure and discovered, happily, that all my fears were unfounded.

I could see well enough despite the dilation to watch as the doctor administered the injection and could feel only the lightest of touches for a scant fraction of a second during the procedure. My trepidation far outweighed the physical realities of the treatment. In fact, the injection was a lot easier and resulted in a lot less discomfort than the laser treatments I had been receiving.

It’s been three months since the intraocular injections. An examination of my eyes, including a scan, showed that the procedure worked well in the right eye, but that the left eye did not respond quite as well and needed some additional attention. The doctor opted for a little superficial laser surgery in that eye, possibly the last that I could have, and we now have about a three-month wait before checking both eyes again.

I’m hoping for the best, but am prepared to undergo any additional treatments, including injections, that may be needed.

I have finally begun to accept the reality of my treatment as it was described by one of my retina specialists: “In medicine, it’s never one and done.” Whether it’s specifically my eyes, my diabetes in general, or my blood pressure, my life is a constant day-in, day-out regimen of diet and exercise, medication, and office visits to stay ahead of the devastating complications of my two diseases.

But I’m lucky.

Just a few years ago, these treatments did not exist, and even more significant advances are constantly being made. And “never one and done” is certainly better than a lot of other prognoses. I have watched as friends and acquaintances have unsuccessfully fought and lost battles with less manageable conditions.

The watching is not easy, either emotionally or physically, but I continue to watch and to wait, as further miracles appear on the horizon for all of us. My nights are more peaceful now, except, of course, for the memories of those I’ve lost to other, less treatable, disorders. My days of sight have been extended, and the future shows promise of continuing to hold off the darkness

Note: Avastin is an intravenous drug FDA-approved to treat certain types of cancer. It is not manufactured, nor FDA-approved, to be injected into the eye. No long-term data from large, randomized trials of Avastin for eye diseases are available, and as such its safety and efficacy profile for any ocular use remains unknown.

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