My Macular Degeneration Story

I'm 70 years old.

I was first diagnosed with age-related dry macular degeneration by my ophthalmologist in 2016. His only advice was to take AREDS vitamins and google the disease which has no known cure. Subsequent annual visits showed little to no changes to the macula but a watch was put on cataracts for eventual surgery.

I found myself cleaning my glasses more and more in October 2018 and while celebrating Christmas my son called me on a Mexican train domino game for playing the wrong domino. This was unusual for me but I shrugged it off. Please note: No one in my family has ever been diagnosed with wet AMD!

Noticed blank areas in my vision

On January 4, while combing my hair, I noticed some blank areas in my vision. I checked it out looking in the mirror and closing one eye at a time. I could see clearly with my right eye but had blank or blacked out areas covering about 70% of my left eye. I got online and asked for an appointment with my ophthalmologist explaining the vision problem. I didn’t hear back from his office for several days. So I called his office directly and received an appointment at the end of the month. I was a little concerned it was that far out but since I hadn’t lost any more vision in the left eye, I let it go. The doctor’s office called two days later saying they had read my first online request for an appointment and scheduled me in for an exam in two days.

Dry had advanced to wet AMD

The exam revealed that my dry macular degeneration had advanced to wet macular degeneration and an unexplained rapid vein growth in the left eye had distorted the macula and was leaking blood. My doctor informed me that a specialist was in his office that day and would put me on a waiting list to see him today. After about 3 hours waiting, I received a very intensive and thorough exam. Dilated eyes, computer-generated retina photos of both eyes, and physical exam of both eyes with a magnifying glass by the specialist.

My treatment options

We discussed my treatment options and I learned that in most cases the progression of the disease could not be reversed but I may see some improvement with injections of a medicine with angiogenesis inhibitors into the eye. This medicine blocks the activity of vascular endothelial growth factor (VEGF), a protein that promotes blood vessel growth. The blood vessels in my left had grown and lifted the macula, distorting my vision so much that light was not reaching a large area of my macula causing extreme vision loss.

Lucentis injection

I received my first shot of Lucentis that day with an appointment for the next month for another exam with a fluorescein angiography in which a fluorescent dye is injected into the bloodstream. The dye highlights the blood vessels in the back of the eye so they can be photographed. The interior of the eye is scanned and produces a computer generated picture.

Candidate for a medical trial

This second exam showed that new vein growth had not occurred and a slight reduction of blood pooling in the eye. I was told that I might be a good candidate for a medical trial to insert a slow release vial in the eye and we talked with trial specialist.

Positive results but bleeding continued

The next monthly exams over five months did produce positive results. The blank areas of my vision in the left eye disappeared and the extremely wavy lines I saw in my Amsler chart became straighter with only jagged lines instead of large waves.

The bleeding in the eye and pool of blood did not diminish and the frequency of injections should have progressed to injections every three months by now.

Changed to Eylea and Beovu

My doctor and I discussed different treatment alternatives. We agreed on changing the medication from Lucentis to Eylea in April 2019. Injections of Eylea continued through November 2019 with varying results. The pool of blood and bleeding in the left eye had not ceased but I could see slightly better in that eye. A new drug had been approved in October 2019 and I received my first injection of Beovu. My left eye improved dramatically over the next three months but other patients nationwide had adverse reactions to the drug including complete loss of vision so we discontinued the use of Beovu and resumed injections of Eylea and moved back to Lucentis through June 2020. I experienced another period of klutziness with my improving eyesight. It settled down as my eyes stabilized.

My right eye progressed from dry to wet

My June 6, 2020, eye exam revealed that my right eye had progressed from dry AMD to wet AMD and I received my first injection of Lucentis in the right eye. First time for injections in both eyes.

Beovu injections in both eyes

I had a fluorescein angiography for the following two months in a row and then on a bimonthly basis. Starting on July 23, 2020, I receive Beovu injections in both eyes on a monthly basis.

My medical diagnosis 11/19/2020:
(Left eye) Nuclear Sclerosis OU: discussed risks and benefits, VA still pretty good at this time, recommend waiting due to poor vision OS, return PRN or if VA gets worse.
Cobblestone Degeneration of Retina OD: No breaks or tears. Recommended observation.
Floaters OU: Recommended observation.
Other Discussion: Advised to call immediately if eye pain or loss of vision.
Other Discussion: Advised regular use of Amsler grid.
Other Discussion: Discussed AREDS supplements, BP Control, and dark leafy green vegetables.
Other Discussion: Decision to treat was made based on today's clinical findings.
(Right eye) Nuclear Sclerosis OU: discussed risks and benefits, VA still pretty good at this time, recommend waiting due to poor vision OS, return PRN or if VA gets worse.
Cobblestone Degeneration of Retina OD: No breaks or tears. Recommended observation.
Floaters OU: Recommended observation.
Other Discussion: Advised to call immediately if eye pain or loss of vision.
Other Discussion: Advised regular use of Amsler grid.
Other Discussion: Discussed AREDS supplements, BP Control, and dark leafy green vegetables.
Other Discussion: Decision to treat was made based.

Lifestyle changes

I quit driving the third month after learning of my disability due to problems with depth perception. I had repeated falls because I could not judge distances (fell into pool once). I cannot see facial expressions or recognize people unless I recognize body shapes and voice recognition. I can watch TV with my right eye using prescription glasses. I have to go into the sunlight to read large printed material.

Large screens and fonts

I replaced my computer monitor with a large screen TV adjusted font and icon size to the largest available and use windows on board magnifying glass to 195 to 250% depending what I am looking at. I increase the font size for my Word documents to assist my creative skills.

Home adaptations

We have cleared pathways in the house so I don’t stumble on chairs, toys, etc. Night lights dot walkways between bed and bathroom so I don’t run into doorways or stumble on non-existent pitfalls.

My wife has been extremely helpful

My wife has been extremely helpful in helping me find things, driving me everywhere, and putting up with temper tantrums due to depression and helplessness. I’ve learned to shave without looking in the mirror and my wife evens out my sideburns. She put a raised dot on the microwave between start and off so I can use it without her help. She reads the cookbook for me and does all the measuring. (I still correct seasoning by taste).

Breaking old habits is hard and adjusting to new routines has its challenges. I joined an online support group as there were no groups available locally. I’m currently looking at visual aids to help me with reading and viewing TV. There are several companies that supply a virtual reality type of headgear that utilize smart phones for camera and viewing screen. They are quite expensive and I am waiting for answers I sent them via email before I make a decision.

Future medical procedure options

There are some additional medical procedures on the back burner for the future. My doctor and I discuss and agree on treatment options and we are at the extreme area of treating my wet AMD with medication. Some types of laser treatment are available but we have sidelined them for now.

Note on my first treatments of Beovu produced amazing results but when they were stopped and restarted my left eye has never recovered the vision improvement I had obtained. The clinical trial was off the table with the move to Lucentis.

Being proactive about wet AMD treatment

We need to be proactive with our treatment of wet AMD and have our physicians advocate for best treatment available.

My doctor’s scheduler decided I only needed treatment every three months and tried to get me to change my appointment. I argued with her, asking if she had discussed the change with my doctor (she hadn’t). I was told that Medicare and my health insurance provider would not cover my treatments since the FDA recommends injections every three months and I would have to pay $3,200.00 for treatment when I came in for my next appointment. She was very insistent that I change my appointment and even had someone from their billing department call me informing me that my total treatment for the rest of the year world be in excess of $13,000.00. I informed her I would pay for the treatment and before the call ended I was yelling and insisting that I would keep my next appointment. I was also told that their office would not be billing Medicare or my health insurance or provide me with a receipt so that I could file a claim myself.

Long story short, I didn’t pay the stated fee, Medicare and my Blue Cross insurance have paid every bill!