Hello, Geographic Atrophy
"Well, this sucks."
To be honest, this was my reaction to first hearing that I now have geographic atrophy (GA), the advanced stage of dry age-related macular degeneration (AMD), in my "good eye."
I didn't think it would happen to me
For the last 5 years, I had been getting periodic injections in my "good eye," the right eye. In the past 6 weeks, I had noticed that the vision in that eye was different. The other one has been a lost cause for years. No injections.
We know AMD is a progressive disease. I didn’t know that I could have both wet and dry in the same eye. I falsely believed it wouldn’t happen to me.
Discussing scan results with my RS
After looking at that morning’s scans, my retina specialist asked if I had anyone with me. That should have been my clue. "Yes, my husband is in the waiting room," I said. "What’s going on?" I thought.
When we were both in the room, the RS showed us that morning’s scans. The area affected by wet AMD was stable. The soma in that day’s scan was 5 times as large as it was in an image from 2 years ago.
Just writing about those moments unleashes a flood of anxiety and sadness. "What the ____ is next?"
Receiving my first injection for geographic atrophy
My future would now include injections every 6 weeks; 1 for the wet and 1 for the dry.
I had read about the new pharmaceutical options for treating GA. Starting in 6 weeks, it would be my new best friend.
I got my injection, made an appointment for the new one, and held it together long enough to bid everyone a cheery goodbye. In the lobby, I let the tears come.
Staying positive about my GA diagnosis
It has taken me almost 2 weeks to get ready to explore this new reality of my life.
If you want to develop a positive mindset after such a diagnosis, do not read the Wikipedia entry on GA. Doom and gloom. Each of us can conjure up an image of the worst possible outcomes — the ways our lives will be poorer with the changes we will have to make.
My 80th birthday is about a month away. I have outlived both my parents and many good friends. I have a great retina specialist and a supportive husband and friends.
Treating GA like a baseball game
I heard a low vision specialist explain that AMD has both physical and emotional effects. The physical are obvious. The emotional, not so much. Anxiety, depression, loneliness — especially if we have to give up the things we love to do and the people we have done them with.
We love baseball and live only a mile or so from a ballpark used in spring training. It just occurred to me that this is rather like a baseball game. We’re in the top of the 7th. My team was leading, but the dreaded opponent just tied the game. What do we do? Run out of the stadium? Bring in a new pitcher? Rethink our tactics? Prepare to go for extra innings? All of the above.
Eat healthy. Take the vitamins even though they don’t seem to be doing much of anything to slow the progression of the disease. Explore technological aids such as screen readers for cellphones. Try not to ever miss an injection. Add new players to the team such as a low vision occupational therapist.
We may lose the game, but we’ll not give up.
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