Life Continues With AMD
You probably won’t believe this, but I do not obsess about my wet AMD every moment of every day. It is true. That is likely why you have not seen any of my brilliant prose in the past several weeks.
What could be more important you might ask...
Providing a helping hand
How about new neighbors. A young couple with five children under the age of ten including twin two-year-old boys moved in about a month ago. He’s teaching at a local college. The hiring schedule meant he had to find a rental in a tight real estate market. He showed up a week before the start of classes with a fully loaded rental truck hauling his car. She drove out with the keys two weeks later.
We’ve been helping with tips on shopping. All the stuff you need to know when you move to a totally new place. And the regular neighbor stuff: “Could we borrow some ketchup” and “Here’s a fresh bottle.”
A trip to the retina specialist
A week ago, we had just sat down in the waiting room of my retina specialist when my husband’s phone rang and I got called in for the process leading up to my injection.
As the first of the drops had gone in, my husband walked in and said, “There’s an emergency.”
Our new neighbor’s car had died in traffic with the youngest three in their car seats. She had called him in tears. “Go,” I said. “Take care of her and the kids and then call me.”
When he did, one of the twins was screaming in his good ear. He took them to their new home which doesn’t feel like their home to them and came back to get me. We stopped for milk and donuts. Delivered those and gave her hugs. The five-year-old chowed down on a chocolate donut. The twins shared a glazed.
Pushing AMD to the back of my mind
Oh, yes, my good eye is stable. No injection for six weeks. I had remembered to take two acetaminophen before the appointment but still felt post-injection punky (a recognized medical term) for the rest of the day.
Somehow this crisis and a few others less dramatic have pushed my AMD to the background.
This does not mean that I don’t notice that I need more light for knitting and reading, or that the type blurs unless I use my target-sweetspot training to read, or that the glare of our sunny days isn’t a bother.
Still staying up-to-date
I also took time to listen yesterday to a BrightFocus Foundation What's Ahead for AMD: Gene Therapy, featuring Arshad M. Khanani MD, MA, trial investigator and director of clinical research at Sierra Eye Associates.
Dr. Khanani is working with RegenXBio in its clinical trial of RGX-314, which is designed to use modified cells to deliver a gene to the retina. The company believes that once the cells are in the retina, they will produce the anti-VEGF protein we now get by injection. One administration of this gene therapy has the potential to decrease or eliminate the need for frequent anti-VEGF injections to treat wet AMD.
It will be three to five years before the treatment will be approved by the FDA, assuming it proves safe, effective, and as good or better than current therapies. I want to be around for that and to see our neighbor’s twin boys get out of diapers and into soccer uniforms.
The moral of all this is that sometimes life just happens – good and bad --and my condition gets squeezed in or takes a back seat to joy and sorrow. And a bit of learning about the science of my AMD.
Do you find it easy to advocate for yourself?