I had another appointment with the retina specialist this morning. I go about once a month for an injection to treat the macular degeneration in my left eye. Both eyes have macular degeneration, but the case in my left eye is among the ten percent of cases so severe that it bleeds into the fluid inside my eye. I’m young to have it at all, much less a severe case.
There is no cure. The eye injections are supposed to shrink the lesions that interfere with my ability to see fine detail. First the doctor tried dirt cheap Avastin. It worked for a few injections than suddenly stopped making a difference. He switched to pricey Lucentis, which didn’t reduce the swelling, but did seem to hold it steady. One or the other of these drugs works for a lot of people. Not me.
Back in January he switched to Eylea, a brand new drug that worked wonders for his patients in the trials. Eylea makes Lucentis look cheap. The treatment plan is three injections, four weeks apart which typically leads to a reprieve from the shots for three months to a year or longer.
I had my third injection of Eylea two months ago. Today’s appointment was just a check-up. If Eylea worked, I wouldn’t need an injection today.
But I knew it wasn’t working. My vision has deteriorated significantly over the last couple of months. Without my glasses, I can’t see to plug my phone into the charger. Thankfully, I know the pattern or I wouldn’t be able to dial a phone number. Even with glasses I can’t see the little triangles on the top of the aspirin bottle, much less line them up. As much as possible, I read on my computer so I can magnify the text for easier reading.
My second favorite of his employees called me back to dilate my eyes and update my history. She didn’t call out my name, she just walked up to me and said, “Mr. Rupured, we’re ready for you now.” Had she been my waitress, that act would have doubled her tip. Then I realized that I’m a steady source of a significant stream of revenue. Hell, they should have a waiting room with my name on it or something.
She handed me a contraption for me to hold over my right eye and turned out the light to check the vision in my left eye. “Can you read those for me?”
I looked over the door and found the little box of light where letters should be visible. “No. Can’t see a thing.”
She makes some adjustments. “How about this?”
“Okay.” More adjustments. “Let’s try this.”
“That is an E.” That’s right. E, all by itself at the very top of the vision chart. At least I’m not blind. Yet.
“Good! How about this?”
I hear the click and see the E disappear. I think there are four letters, but maybe there are only three. I can see the letter on the far right is either an E, an 8, or an S–I can’t tell for sure. Bits and pieces of the other two or three letters become visible as I move my head around. I’m pretty sure there are four letters, but I have no idea which letters they are.
My favorite of his employees takes me back for a retina scan. She comments on my bad results, and as the scan begins, says, “No wonder you can’t see. Your eye is full of floaters.”
Floaters are just debris that floats around in the fluid inside your eye. Normally, the clear fluid is free of debris. But with macular degeneration, the junk oozing out of the lesions drifts around inside the eye. I have so many now that they interfere with my ability to see.
She showed me the scan of the retina surface. Macular degeneration looks like a little mountain range on the scan. She said it looked like the drug was working on my existing lesions. But a Mount Everest that wasn’t there two months ago now towered over them.
The doctor said the cause for the change was a mystery. I asked him if it could have been something I did and mentioned a day when I was lifting weights and after a rough set, couldn’t see the page to write down what I’d done. He never really answered. I wanted him to tell me I needed to quit lifting weights. Damn him for not enabling me!
My least favorite of all his employees assisted with the injection. She puts numbing drops in my eye and wipes the surface with a q-tip dipped in some kind of topical. Then she paints betadine around my eye and puts drops of betadine in my eye. Today they stung like the dickens which means the numbing stuff isn’t doing it’s job. She ignored my complaints. Bitch.
When I was fully prepped, she left to get the doctor. I could feel betadine dripping slowly down my cheek and over my jaw. As it headed down my neck toward my shirt, I pulled a tissue out of my pocket and wiped it off my neck up to my jaw. She caught me in the act, scolded me, and snatched that tissue from my hand like I was three years old. “You’re going to stain your clothes!”
She put more betadine in and around my eye. When the doctor came in, I was complaining to her about the burning. He made her put more numbing drops in.
After the injection, her job is to wipe the betadine from my face, flush it from my eye, put a drop of antibiotic in (which I continue to do at home for several days), and then poke me in the eye with this little stick to check my eye pressure. The flushing is the critical part, and I always ask them to keep flushing when they think they should be done. It’s just water. And a good flush makes a big difference in how my eye feels for the rest of the day.
She flushed it out twice. I got her to do it again, but my eye still burned. “One more time if you don’t mind.”
“I flushed until it came out clear. No more.”
I wanted to argue with her about how few parts per million of betadine it takes to make ones eye burn. Then I thought about jumping up and squirting betadine in her eye. But I did nothing and sat there, waiting for word I could go.
They won’t let me leave until my eye pressure is below 40. Sometimes I get to leave right away, sometimes I have to wait around for the pressure to drop. Today was a waiting around day. The bitch stayed with me the entire time which fortunately, was only about ten minutes.
I go back in four weeks for another Eylea injection, and four weeks after that for a third. I’m keeping my fingers crossed and hoping it shrinks the lesions, old and new. Otherwise, I’m heading toward blindness here in…
My Glass House
11 responses to “Going, Going, Nearly Gone”
Oh honey, how awful for you (((((hugs))))) 🙁
Crossing everything for you xx
Thanks Vicki! I’m optimistic and very much appreciate the positive vibes you’re sending my way.
I had no idea it was getting worse. I’ll be praying for you!
Thanks Joni! I’ll take all the help I can get!
I’m so disappointed for you. I hope and pray they find something that will work and quick. I don’t understand why this has happened, you’re the only person I know in our family that has this. I’ll step up my prayers. Love you!!
Thanks Missy. Hopefully the new spot will quickly respond to the drug.
I wish I could have gone with you, Michael & been your ‘voice’ Working in health care & bending over backwards to meet the individual needs & perferences of our clients & patients—I have a REAL problem with staffers who don’t bend more than the unkind assistant you encountered today. I’d ask not to have her on your case for next time; I’d ask in advance so they can plan accordingly. On a deeper level, I’m angry at your situation–it seems so horribly unfair & infuriating. My office has a nutritional formula called Eyebright-M, nutritional support for Mac Degeneration. Made by a company called Nutri-West, Inc. You may want to contact them for a closer source, Mainly contains anti-oxidants, nutritional support for eye renewal. Wish I could make this problem go away from your world. I will visualize seeing you able to see more clearly each day, & feeling immense gratitude for your improvement…..
Everyone please join me in this exercise:
See Michael’s vision getting clearer, more focused, each & every day, see him & hear him breathing a sigh of relief & being in gratitude as he heals….Let each thought you think of him shine brightly with renewed clarity of vision, a huge smile & a “Thank God!” kind of feeling.
(inspired by Eric Butterworth in his excellent book on prayer & more: “The Universe Is Calling.”) The color for that chakra is violet; power up a clear bright glowing violet light around Michael & allow it to penetrate his being.
Wishing for your highest & best!
Thanks Jeanie. Except for her, his staff is wonderful–and I’ll be sharing my experience with her next time I see him. I do take a supplement for my eyes that sounds similar to what you describe. I’m just glad I have good insurance!
Michael, my heart is hurting for you. That is the most hideous thing that can happen…no vision. My dad lost his vision to macular degeneration and it has been high on my list of the worst thing you can have. I’m so sorry. *hug* That woman should be slapped IMHO.
I will definitely join Jeanie’s vision work.
Mama, as always, you are too sweet. Thanks so much for joining the vision team. And next time I see her, I’m gonna let her know you’re looking for her 🙂
I missed this post. Dang. Praying for MUCH better news next time. That girl needs a serious bitch-slappin’. (Or having her own eyeball stabbed!)