Macular degeneration

Courtesy All About Vision

Back in 1999, I reviewed an inspiring memoir called Twilight, by Henry Grunwald, for the Sunday New York Times Book Review.

Grunwald had been the longtime editor of Time magazine as well as a distinguished author, and was Ronald Reagan’s ambassador to Austria. In 1992 he was diagnosed with age-related macular degeneration, in which “the sufferer sees everything through an ever thickening haze.” AMD is incurable and at the time always led to near blindness, its victim unable to read. Grunwald was 69 years old at the time of diagnosis and lived for 13 more years until his death at 82 in 2005.

Twilight is a small but magnificent book, candid and graceful, full of coping, humor and imagination. It’s one of the books I most remember from my 33-year career as a book review editor and critic. I’m still proud of the review as one of the best I ever wrote.

How ironic, then, that just the other day I was diagnosed with macular degeneration.

I had awakened one morning last week with a large grey-brown spot in the landscape of the vision in my right eye, a spot that I could not see through. It is off to the side and not in dead center.

Wet AMD, said the retina specialist a few days later at Ironwood in the Yooper North Woods. The trouble is blood vessels growing wild behind the retina and leaking, causing damage to the macula, the part of the retina responsible for central vision. It cannot be cured. If I didn’t do anything about it, the blank spot would rapidly grow and I’d go blind in that eye within six months. 

Injections directly into the eye can slow down the progress of the disease for quite some time, possibly years, the specialist said.

What about the other eye? There were some very slight indications of possible “dry” AMD, normal for my age, he said. There was a 50 per cent possibility it could worsen over time.

The decision was a no-brainer. I had the injection into the right eye—of Avastin, a drug originally formulated in 2004 to stem bleeding in colorectal cancer but now widely used “off label” by ophthalmologists to  treat wet AMD. Studies show it works  as well as injections of two similar but staggeringly expensive drugs, Lucentis and Eyelen. Avastin costs about $50 a dose while Eyelen is $1,800 and Lucentis is $2,000. (Naturally Medicare pays for all three.)

What was the shot like? “You’ll feel pressure,” the retina specialist said. “You’ll feel a prick,” his technician said. They were both right. On a pain scale of 1 to 10, I’d call it a 3—and the hurt was mercifully short, just a second or two.

At the end of this month we’re going back to winter quarters in our Chicago suburb, and we’ve arranged for a followup injection in October. There will be a third a month later, after which a reassessment, and perhaps injections for the rest of my life—as long as they work.

So I have the kind of hope that Henry Grunwald never enjoyed. Of course, our cases are different in that I’m totally deaf. Not to put too fine a point on it, functional blindness would send me up a very dark branch of shit creek.

I don’t pretend to be as distinguished a writer as Grunwald, but still will follow his example in chronicling a disease that affects millions of people around the world. Stay tuned.