It’s Working!

Two years ago this month, I was diagnosed with macular degeneration. I have a mild case in my right eye and an advanced case in my left. To have the condition at my age is unusual. To have such an extreme case at such a young age is practically unheard of. For once, I’d prefer not to be so exceptional.

Since being diagnosed, I see a retina specialist. At first I went every six weeks. Now I go every four. Let me tell you, four weeks rolls by fast.

There is no cure for macular degeneration. As I understand the condition, swelling occurs inside the eye that interferes with my vision. The peripheral vision in my left eye is fine, but I can’t see a thing when I look straight at it. Fortunately, the case in my right eye is mild enough that I mostly see fine.

That the swelling oozes gunk into the fluid of my left eye is what makes my case “advanced.” The eye doesn’t have a filtering mechanism, so whatever is in there stays more or less for good. I had to stop taking my daily aspirin because it increased the bleeding and made things worse.

The treatment to hopefully keep it from getting any worse is an injection–in the eye–of one of several drugs to shrink the swelling. I started out on Avastin–the cheapest option, intended for treatment of colon cancer. When it didn’t work, the specialist switched me to Lucentis–at more than $1000 a dose. It didn’t work either. Now I’m on Eylea, a new drug that makes Lucentis look cheap.

Over the last two years the vision in my left eye has steadily deteriorated. For the last few appointments, I’ve only been able to make out the top letter on the eye chart. Today I couldn’t even do that. I could only see fragments of the letter–and they moved. It was weird.

Despite my deteriorating vision, the retina scans I get every visit show that, with the last three appointments, the swelling has gone down. This is good news–and the first time I’ve had three good appointments in a row. My vision isn’t improving because I can’t see through the junk floating around in my eye. It’s like my glasses are all smudged up–even when I’m not wearing them.

Though I dread them, the injections don’t bother me so much anymore. I know the technicians–they all say hello to me by name when they see me. I’ve also learned that the key to a trouble-free day is to ask for mild dilation, and after the injection, to make sure the technician thoroughly rinses my eye out to make sure all the betadine is out. If not, my eye burns for the rest of the day.

Today I asked the retina specialist about a report I heard on NPR about using stem cells to actually cure macular degeneration. He said there’s been a lot of research around stem cells but any cure is eons away. He’s about to start a clinical trial on a new delivery system–a time-released drug that would only need to be injected once a year. Sounds great to me.

The growth of the over-65 population is driving a demand for research on age-related conditions like macular degeneration. Maybe one day they’ll find a cure. Until then, you’ll find me fumbling for my spectacles here in…

My Glass House

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