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16 years of anti-VEGF for wet AMD and still seeing well

For 16 years I've been taking injections in my right eye for wet[-AMD. In fact, on June 30, 2006, I had had 3 injections and improved vision to the point my retinal specialist asked me to appear on TV in our metro area with him. I also became a patient-ambassador to tell my story over many areas in the U.S. Though I live with AMD, I'm faithful to do everything my retina specialist tells me. So my vision still amazes me in light of both of my parents having wet AMD in both eyes & dying blind. Further, I shared my story with our sons and other in the genetic line I have. Eternal vigilance is my motto for keeping vision the best it can be. And I still function completely.

  1. Wow!!! Sixteen years. That's really impressive. So glad you wrote in with your story.
    Newly diagnosed people often think that there is no hope. Truth is that the disease seems to effect each of us differently. Positive attitudes like yours and sticking with the care plan make a huge difference. Thanks you for writing.
    Beverly Dame, Advocate

    1. . Thanks for kudos on my sharing. This bulletin board helps in lots of ways. It tends to overcome erroneous information by the actual testimony of those who pos about their experiences. My ongoing counsel is to see a retinal specialist.

  2. Finding someone you trust and listens to you is key. Beverly Dane, Advocate

    1. Finding someone who listens to white haired-partially sighted old women do not matter for much in the public's view. My own geriatric YOUNG Doctor seems to be amazed at too many things I want to ask him. I am not a nut nor a creep..the questions I have are pretty mundane.

    2. it can be difficult to find the right doctor who treats us with respect. My young doctor is both competent and respectful. I feel like an equal partner with him in making health care decisions. Does your doctor answer all your questions? Regards, Sharon Moore patient leader

  3. you certainly have done a service to the greater community by sharing your story and becoming an ambassador for these retinal injections. You mention that eternal vigilance is your motto for keeping your vision the best it can be. I am wondering if there have been any times that you noticed a change in your sight and returned to your specialist early, before your next scheduled appointment. This is something I struggle a bit with, because my sight seems to change each day and I can't keep returning all the time. My macular degeneration is dry, but the principal seems to be the same. Kind regards, Wendy, Patient Leader.

    1. Wendy, I made one or two calls between regular injections to ask my retina specialist a question but never had to go into see him between injections over 16 years. I did write that eternal vigilance is my motto about AMD--whether it's dry or wet. But it's also good to avoid anxiety syndromes, alarmist concerns, etc. And for those of u s who pay excessive focuses on vision day by day, we may notice some change by small degrees. Daily use of the Amsler Grid is good. Significant changes in floaters in number or size would be worth a call in. Any radical things like pain, lightning flashes, etc. are worth a call--or perhaps a visit to your retinal specialist. Avoid people who are cock-sure about cause-and-effect thoughts about their own condition not confirmed by retinal specialists and tests. I was a patient ambassador for a drug company that provides an effective drug to work against wet-AMD. I got training at their special meetings in which many of us were ready to be cock-sure about the cause-and-effect of our AMD [whether dry or wet]. The scientists tend to want more studies that are more than anecdotal. We need to be vigilant but not cock-sure of what scientists don't even know. ~Godwin 9.7.2022.

      1. thank you for taking the time to write this answer. Yes, I agree that one can become obsessive and overly anxious when checking their sight. My Amsler Grid looks just a little bit different each time I look at it depending on the light in the room, the time of day, etc. I did go back when I noticed a change in my left eye, and the doctor was glad I went. But the change she found was in my right eye! So much for my observation skills! Best wishes, Wendy, Patient Leader.

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