Bound for Blindness

This morning I had yet another appointment with the retina specialist for my macular degeneration. We’ve seen each other every four to six weeks for nearly a year. On all of those visits but one, he has given me an injection in my left eye.

Macular degeneration is a swelling between the layers of the retina. I have it in both eyes, but the left eye is worse–a lot worse than ninety percent of macular degeneration cases. The swelling in that eye has advanced to the degree that it blocks my vision and interferes with my ability to see details.

The first few months, he used Avastin for the injections to shrink the swelling. It seemed to work. The swelling went down, my vision improved, and I even got to skip an injection. Subsequent injections did nothing to reduce the swelling. In fact, the swelling actually increased.

The cost of one appointment is about $2,500. Of that, $75 pays for the Avastin. When it quit working, he switched me to Lucentis at a cost of about $2,000 per dose. Thankfully, I have good insurance.

Unfortunately, the Lucentis didn’t work either. On the plus side, it seemed to keep the swelling from getting any worse. But my condition didn’t get any better. Back in September, the specialist told me the FDA was about to approve a new drug that should be available after the first of October.

It wasn’t.

Aside from the cost (most of which is covered by insurance), it’s frustrating to endure an injection that does little more than maintain the status quo. With each new appointment, the doctor said the new drug should be available next time I came in. I had Lucentis injections in October, November, and December.

During my December appointment, he said the new drug (Eylea) had finally been approved and that I needed to fill out a bunch of paperwork before he could give it to me. Although I was disappointed about yet another Lucentis injection, I knew it would be the last. I filled out the papers that afternoon and sent them back to his office.

Rather than dreading my appointment and the inevitable injection, today I was excited about getting the new medicine. The decline in my vision since my last visit didn’t bother me. The discovery of blood oozing from the swelling into the fluid of my eye for the first time didn’t bother me either. I knew the new drug would make everything better.

When the assistant called me back for my injection, I practically skipped down the hall. Then she closed the door and said she had some bad news. My insurance company wouldn’t authorize the new treatment. I was going to get another injection of Lucentis. My heart sank.

She swabbed my eye with q-tips covered with a numbing agent. Then she painted my eye and the surrounding area with betadine. She had me sign the consent form for a Lucentis injection,opened up the sterile injection kit, and went to get the doctor.

While we were waiting for the doctor, the receptionist came running in. Good news. The insurance company had authorized the new drug. My heart soared.

I asked the doctor about my long-term prognosis. If my macular degeneration continues to progress, blindness is inevitable. If the Eylea works, it could be years or even decades before I go blind. If it doesn’t, well, we’ve nearly (but not entirely) run out of treatment options. Obviously, I’m hoping for the best and keeping all my fingers and toes crossed here in…

My Glass House

4 responses to “Bound for Blindness”

  1. Geeze, Michael! I had no idea that it was that bad. Wishing you all the best and praying that the new medication works for you.
    I don’t think Toodles will make a very good guide dog. 🙂

  2. Oh, Michael, that is hideous…not too strong a word, either. I’m sorry. I hope the new med works for you. Before the cataract surgery I was having serious detail vision difficulties…it is truly frustrating and scary to have your eyes going wonky. Good thoughts and love coming at you!

    • Thanks mama. I try to just take each day as it comes. Hopefully the new medication will make a difference. I definitely appreciate the good thoughts and love from you and the rest of my online friends.