My Story: Incompetence, Poor Care, and Despair

Last updated: June 2020

Here's my story.

I'm 25 years old, and right now I suffer from wet macular degeneration in my left eye that developed a scar (central vision bleeding), and geographic atrophies in both eyes (not yet in the center of the right eye).

Bleeding in my retina

It started some 18 months ago with my left eye. Blurriness adjacent to the center of vision but not exactly there, but still I dismissed it as floaters and sure enough in a few days it disappeared. Fast forward 4 or 5 months and the blurriness returned again even worse and it persisted longer. So very worried, I went to the doctor, doc ordered an OCT, and was told I had bleeding in my retina, fluids build up. The doc tells me it will resolve itself in 4 to 6 months... and I go home with that.

Treating the bleeding with anti-VEGF injections

A month later symptoms worsened, I went to another doctor, OCT showed a small tissue has grown within the bleeding, doc tells me since my right eye is ok, he thinks it's a virus infection (cmv? he said) and I should take 3 Avastin injections in 3 months to treat the bleeding.

Had to wait for injections to become available in my country

All good, right? No. I live in a 3rd world country and the first injection had not been available for yet another 3 months, and the second for another 3 months after that. So I've waited with wet AMD for more than 5 months for the first injection, which was regrettable.

Meanwhile, I grew used to the distortion in one eye, resumed my college studies and lived on with so much pain. But I always thought: well, I still have my right eye and that is something, so my academic future is not all lost. But throughout that period of waiting I never stopped reading about retinal disease, so I was still worried.

No change in symptoms

Time passed, I got the first injection, not much changed. but the eye was stable. 3 months later, second injection, not much changed, OCT showed fluid was absorbed but the tissue remained and somewhat grew a bit. Still no change in symptoms.

Unable to continue injections due to COVID-19

A month later, a few days before my 3rd injection time came, Covid-19 hits hard. All operations suspended, all hospitals closed due to lack of protective gear. And sure enough a few days later my left eye's condition worsened. Dark spots formed away from center, dimness, grayness in place of the distortion. I freak out. I can't sleep, nightmares, anxiety, depression.

My symptoms worsened

A month later, still in lockdown, I spot shadows in my left eye's peripheral vision, a few days later my right eye started seeing same shadows. A month later dark spots developed in my right eye, away from my center of vision but still... I was shattered.

My "good eye" was now ill. After more than a year since the start of my symptoms, and after I thought I've learned to live with my ailment, but now lightning struck.

Finally diagnosed with macular degeneration

Hospitals opened, I went to a new doctor, after an OCT test, he finally diagnosed me with macular degeneration (after a year of suffering).

Again, in another stab to the heart, the doctor told me that my right eye will develop (inevitably as he put it) a wet bleeding. And shows me that my retina's thickness diagram shows build-up of drusen. And so it seems without me even realizing I had advanced AMD... And any day now my "good eye" will be gone.

...And I don't feel I can go through with my life if that happens.

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