My Long AMD Journey

My AMD (age-related macular degeneration) happened overnight… one day my vision was fine… the next day the vision in my left eye was like looking at squiggly steps.

My diagnosis

My ophthalmologist saw me the day my vision changed and she got me an appointment with a Retinal Specialist 2 days later. The diagnosis was a few days before my 68th birthday in 2020… Wet AMD in my left eye. My only hope… an injection.

I cried like a baby while sitting in the Retinal Consultant’s chair. My mom was diagnosed 3 years before me (but she was 88!)… and she hated the injections… and being miserable for 2 days afterward. Did I think it was unfair… could I do injections for the next 20 years?

My first injection

The doctor gave me extra numbing drops and after waiting a few minutes longer, I was brave enough to get my first injection (Avastin). I felt no pain, just the pressure of the needle. It was over very quickly.

I do agree with others that the “waiting” is the worst part. My diagnosis – I was going to get an injection once a month… oh joy. My second injection was the same experience.

My doctor switched my injection to Lucentis on my third visit (September). I drove myself to my appointment and back home with dark glasses over my sunglasses. My 4th visit and 5th (Oct/Nov) visits were monthly as well, both with injections.

What my journey looked like

My personal journey is on a kind of hold and see, my last eye injection was December, 2020. Next week I will go for a recheck, now having 6 months between appointments definitely goes in my hopeful category.

  • December 2020: Injection… come back in 2 months (March, 2021)
  • March 2021 visit: No injection… and I did not have to go back for 3 months (June, 2021)
  • June 2021 visit: No injection… and I was given a 4 month window (November, 2021)
  • November 2021 visit: No injection… and I was given a 4 month window to February, 2022
  • February 2022 visit: No injection… and I was given a 5 month window to August, 2022
  • August 2022 visit: No injection… and I was given a 6 month window to March, 2023

In summary, I had a total of 6 injections since my diagnosis in July, 2020 and have been injection free since January, 2021. (I am writing my story in February, 2023).

Questions I have asked myself

  • Am I different from most who have AMD?
  • Was this diagnosis genetic for me?
  • Was it the result of hitting my head years earlier?
  • Could it be it linked to a fall out of bed when I broke a rib and messed up my ear (both on my left side)?
  • Was it from taking Claritin D (recommended by an ear specialist) for 6 months to clear up the clicking sound in my ear?

What I do to take care of myself

I do believe you must be an advocate for yourself. Research everything you can get your hands on. My Retinal Specialist recommended PreserVision supplements 2 times/day.

I also added Tuna Omega-3 capsules which I take 2/day. They will make you nauseous if you don’t eat something with lots of fiber. My suggestion is Aussie Bites (Costco or Smart & Final carry them). I eat 2 in the morning, one with each capsule, then take 2 more with dinner.

Staying hopeful

Thank God every day for your MD and be glad it was not one of your siblings. I still drive and do everything I want to do – exercise, volunteer 3 days/week, garden – just stay active and never, never give up hope.

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