It’s Working!

6

Two years ago this month, I was diagnosed with macular degeneration. I have a mild case in my right eye and an advanced case in my left. To have the condition at my age is unusual. To have such an extreme case at such a young age is practically unheard of. For once, I’d prefer not to be so exceptional.

Since being diagnosed, I see a retina specialist. At first I went every six weeks. Now I go every four. Let me tell you, four weeks rolls by fast.

There is no cure for macular degeneration. As I understand the condition, swelling occurs inside the eye that interferes with my vision. The peripheral vision in my left eye is fine, but I can’t see a thing when I look straight at it. Fortunately, the case in my right eye is mild enough that I mostly see fine.

That the swelling oozes gunk into the fluid of my left eye is what makes my case “advanced.” The eye doesn’t have a filtering mechanism, so whatever is in there stays more or less for good. I had to stop taking my daily aspirin because it increased the bleeding and made things worse.

The treatment to hopefully keep it from getting any worse is an injection–in the eye–of one of several drugs to shrink the swelling. I started out on Avastin–the cheapest option, intended for treatment of colon cancer. When it didn’t work, the specialist switched me to Lucentis–at more than $1000 a dose. It didn’t work either. Now I’m on Eylea, a new drug that makes Lucentis look cheap.

Over the last two years the vision in my left eye has steadily deteriorated. For the last few appointments, I’ve only been able to make out the top letter on the eye chart. Today I couldn’t even do that. I could only see fragments of the letter–and they moved. It was weird.

Despite my deteriorating vision, the retina scans I get every visit show that, with the last three appointments, the swelling has gone down. This is good news–and the first time I’ve had three good appointments in a row. My vision isn’t improving because I can’t see through the junk floating around in my eye. It’s like my glasses are all smudged up–even when I’m not wearing them.

Though I dread them, the injections don’t bother me so much anymore. I know the technicians–they all say hello to me by name when they see me. I’ve also learned that the key to a trouble-free day is to ask for mild dilation, and after the injection, to make sure the technician thoroughly rinses my eye out to make sure all the betadine is out. If not, my eye burns for the rest of the day.

Today I asked the retina specialist about a report I heard on NPR about using stem cells to actually cure macular degeneration. He said there’s been a lot of research around stem cells but any cure is eons away. He’s about to start a clinical trial on a new delivery system–a time-released drug that would only need to be injected once a year. Sounds great to me.

The growth of the over-65 population is driving a demand for research on age-related conditions like macular degeneration. Maybe one day they’ll find a cure. Until then, you’ll find me fumbling for my spectacles here in…

My Glass House

Going, Going, Nearly Gone

11

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?”

“Nope.”

“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

Results!

3

My monthly appointments with the retina specialist roll around entirely too fast. Seems like I had one just last week. Hard to believe four weeks have passed since my last injection.

If you’ve been following along, you know I have Age-related Macular Degeneration in both eyes. At 54, I’m young to have this condition–much less, a case as severe as what I have in my left eye. I suspect high mileage is to blame. If you haven’t been following along, read my post from a month ago when I last visited the specialist.

Earlier this week I got my first bill for the new treatment: $3,790. That’s $175 for the office visit, $125 for the retina scan I get every time I go, $990 for the injection procedure, and $2,500 for Eylea–the new drug I’m counting on to save my sight. Fortunately, I have good insurance. Of that, I had to pay $509.88, an amount that will drop once I meet my annual deductible.

A retired friend of mine says getting older is not for wimps. I agree, and would add it’s also not for people without insurance. And yes, that at my age I’m already dealing with two chronic conditions (the other being high cholesterol) has a lot to do with my new active lifestyle. I’m hoping that exercising regularly and losing weight will prevent diabetes, heart disease, and high blood pressure.

Having learned that they call people back in the order we sign in rather than by the appointment time, I arrived fifteen minutes early. The office was already so full I had to take a seat in the overflow waiting room. The doctor and his team of three assistants arrived from Augusta about ten minutes later.

The first assistant called me back, dilated my left eye, and checked my vision. She said my vision had improved a bit since last time. I took this to mean I’d done a better job than usual guessing, because I really couldn’t see that last row of letters at all. She sent me to the dark waiting room where already-dilated patients wait for the next step in the appointment.

A while later, assistant #2 did my retina scan. Usually I ask if it looked any better than the previous scan in hopes that I can maybe skip an injection. Since the treatment regimen for the new drug requires three injections, four weeks apart, I already knew I’d be getting one so I didn’t ask. After the scan I returned to the dark waiting room to wait for my visit with the doctor.

The retina specialist is from India, complete with turban, beard, and a flowing mustache. He’s very nice, soft-spoken, and efficient with an excellent bedside manner. Despite herding dozens of patients through the office every day, I always feel like he’s sincerely glad to see me. I like to think it’s because I’m just so darn adorable. Anyway, he told me that the swelling in my retina had gone down by about 15 percent. That means the new drug is working!

After yet another stay in the dark waiting room, assistant #3 called me back for my injection. A shot in the eye is not something one gets used to–I know because we talk about it in the dark waiting room. The shots don’t hurt. The worst part is the Clockwork Orange speculum they use to hold my eye open for the procedure. Hate it. Once they put the speculum on, I have to tell myself to breathe. Fortunately, the procedure takes less than a minute.

On the way home, I stopped at Captain D’s to pick up lunch–my reward for having endured another injection. Usually I get broccoli and green beans for side dishes. Today I went all out and replaced the broccoli with fried okra. Some days you need to treat yourself. To compensate, I only ate one of the hush puppies.

Then I do what I always do after an eye appointment–took a nap with the chihuahuas. I’m still feeling a bit under the weather, so I took a couple of generic NyQuil gel caps. Note to self: Don’t do that again. I didn’t wake up for almost four hours. That means I’m probably looking at a sleepless night here in…

My Glass House

Bound for Blindness

4

This morning I had yet another appointment with the retina specialist for my macular degeneration. We’ve seen each other every four to six weeks for nearly a year. On all of those visits but one, he has given me an injection in my left eye.

Macular degeneration is a swelling between the layers of the retina. I have it in both eyes, but the left eye is worse–a lot worse than ninety percent of macular degeneration cases. The swelling in that eye has advanced to the degree that it blocks my vision and interferes with my ability to see details.

The first few months, he used Avastin for the injections to shrink the swelling. It seemed to work. The swelling went down, my vision improved, and I even got to skip an injection. Subsequent injections did nothing to reduce the swelling. In fact, the swelling actually increased.

The cost of one appointment is about $2,500. Of that, $75 pays for the Avastin. When it quit working, he switched me to Lucentis at a cost of about $2,000 per dose. Thankfully, I have good insurance.

Unfortunately, the Lucentis didn’t work either. On the plus side, it seemed to keep the swelling from getting any worse. But my condition didn’t get any better. Back in September, the specialist told me the FDA was about to approve a new drug that should be available after the first of October.

It wasn’t.

Aside from the cost (most of which is covered by insurance), it’s frustrating to endure an injection that does little more than maintain the status quo. With each new appointment, the doctor said the new drug should be available next time I came in. I had Lucentis injections in October, November, and December.

During my December appointment, he said the new drug (Eylea) had finally been approved and that I needed to fill out a bunch of paperwork before he could give it to me. Although I was disappointed about yet another Lucentis injection, I knew it would be the last. I filled out the papers that afternoon and sent them back to his office.

Rather than dreading my appointment and the inevitable injection, today I was excited about getting the new medicine. The decline in my vision since my last visit didn’t bother me. The discovery of blood oozing from the swelling into the fluid of my eye for the first time didn’t bother me either. I knew the new drug would make everything better.

When the assistant called me back for my injection, I practically skipped down the hall. Then she closed the door and said she had some bad news. My insurance company wouldn’t authorize the new treatment. I was going to get another injection of Lucentis. My heart sank.

She swabbed my eye with q-tips covered with a numbing agent. Then she painted my eye and the surrounding area with betadine. She had me sign the consent form for a Lucentis injection,opened up the sterile injection kit, and went to get the doctor.

While we were waiting for the doctor, the receptionist came running in. Good news. The insurance company had authorized the new drug. My heart soared.

I asked the doctor about my long-term prognosis. If my macular degeneration continues to progress, blindness is inevitable. If the Eylea works, it could be years or even decades before I go blind. If it doesn’t, well, we’ve nearly (but not entirely) run out of treatment options. Obviously, I’m hoping for the best and keeping all my fingers and toes crossed here in…

My Glass House