The Eye Thing
When I went to the States this summer, I took along three pairs of reading glasses and a pair of distance glasses. One pair of reading glasses apparently fell through a hole in my coat pocket in an airport. Another one went missing shortly after I got back to Quezon City. My only remaining pair had a scratched lens. All this turned out to be very fortunate, because it forced me to get at least one replacement. So in mid-September I went to an optician in the shopping center on the University of the Philippines campus. During the examination, she became troubled and announced I needed to see a doctor. I could order my glasses later.
In 2008, over a period of about six months, strange things had happened to me: 1) two cases of rash probably caused by detergent left in laundry—none after I insisted that Fe use my automatic washing machine instead of doing the laundry by hand; 2) skin so dry it formed welts when scratched; 3) bad hair from the chlorine and God knows what else in the pool, such that my hair was doing a constant Alfred Einstein imitation; 4) a rash of undetermined origin, which happens in the tropics; 5) a sudden infection in my right earlobe, causing a skin blemish to swell up to the size of a pigeon egg; 6) intestinal flu; 7) two cases, two or three weeks apart, of the right eyelid turning red and swelling my eye shut, probably caused by mites in my down pillows; 8 ) a bug flying in right eye when I was using the rowing machine and getting stuck under lower lid, causing the eyelid to get red and swollen; 9) a head injury when I slipped in the women’s room at the swimming pool and hit the wall with my head, which bled profusely and required stitches; 10) a very badly skinned knee and leg caused by tripping at night over a protuberance in the sidewalk, leaving a hole in my tan; 11) a bit of hot sauce from local restaurant striking lower lip and causing it to swell up to half the size of a pigeon egg; 12) an injured shoulder from carrying very heavy bags with groceries which was so sore it caused my whole body to stiffen up, requiring multiple massage sessions. Just nuisances. In general I tend to be heroically optimistic with regard to my health. My high blood pressure was also discovered by accident when I was demonstrating to Fe how to take hers.
I walked over to the University Health Service to see the eye doctor who had treated the swollen eyelid and the bug in the eye. We chuckled over this experience before she looked at my eyes and discovered a big brown spot in the middle of my right eye. I’d noticed blurriness when focusing my new camera–the only time I used only the right eye–but thought it was some sort of weird grid in the viewfinder. The doctor said there had been no sign of a problem when she’d examined my eyes earlier. She wrote out a referral to a specialist.
Back in Pittsburgh I have a close friend of over twenty-seven years. The only time I’ve seen her cry was when she was diagnosed with the dry type of macular degeneration—although that was years ago, when less was known about it—and she was very upset about the prospect of going legally blind and being unable to read. However, she’d gotten excellent results from taking a vitamin and mineral supplement called Ocudyne. The degeneration had stopped and even reversed itself.
The eye clinic I was sent to was in one of those probably adequate hospitals with a charmingly third-world atmosphere. Dim lighting, lots of patients waiting, very caring professionals. Twenty-five years ago, our university hospital in China had a similar atmosphere. The one time I got a bad cold, I happily took the opportunity to check out traditional Chinese medicine. But this was my eyes, and this was serious. The specialist in the crowded examination room ordered some blood tests to determine whether I could have an angiogram, which would show whether I had the genetically transmitted dry type or the age-related wet type.
I had the blood tests done in a modern clinic on the top floor of a shopping mall, a place I’d been to before for various routine tests. Fortunately, the nurse-receptionist at the hospital had forgotten to remind me to fast six or eight hours before the blood tests. I say fortunately, because angiograms were only done at that eye clinic once a week, and the additional eight hours I had to wait made me miss the test at that hospital. Since I wanted to get on this—everything I’d read on the Internet indicated that time was a factor—as soon as I got the blood test results I hurried over to a swank hospital of the sort that’s popular with medical tourists. The eye clinic there did the tests immediately and determined that I had the wet type, which is characterized by the development of abnormal blood vessels in the retina.
Possible causes include genetic factors (one of my grandmothers was blind when she was in her nineties, but I don’t know why), high blood pressure (yes, but controlled by medication), smoking (not since 1985), race (white, yes), sex (female, yes), and living in the tropics (wow, UV rays, I guess). My housekeeper blamed all the hours I spend at the computer. Later I learned that tests show wet-type macular degeneration may be prevented by eating egg yolk as a regular part of the diet. And I had been a good girl and not eaten eggs because of the cholesterol, which they now say hasn’t been proved.
As soon as I got the results I asked to be referred to a retinal specialist at the hospital. The eye clinic immediately sent me to see a nice woman who, curiously, had no patients in her waiting room. She looked at my eyes again and recommended a minimum of three Lucentis injections in each eye, one month apart, after I got a clean bill of health from my internist—so, more tests and a physical exam. I might need more injections later, maybe twelve altogether. Alternately, she said photodynamic therapy could be done on both eyes simultaneously for at least three treatments, but the results are not as good as the injections, which were not cheap. $2,000 a pop just for the medication. That was a bit of a shock, because medical costs are low here. I was used to paying ten dollars for a blood test, twenty or forty for a sonogram. These injections could be more than $25,000.
“I don’t know whether my health insurance will cover it,” I said.
She said, “A was talking to some patients recently who said that in America the Lucentis injections are free.”
What followed was a lot of activity on the Internet. I wrote to my health insurance provider who said the injections were standard treatment for this condition and sent a form for the specialist to fill out. I also discovered that in fact Medicare did pay for Lucentis and in Britain, the National Health Service was good for fourteen injections. My friend Bob—known as Uncle Bobby when he’s being particularly caring and protective, which he often is—offered to put me up for two years if necessary so I could get the treatment done in Boston. I telephoned my friend in Pittsburgh and the insurance administrator in Hong Kong.
The forms were emailed from Hong Kong on a Tuesday. I rushed them over to the specialist and waited outside a dark, empty office. When her receptionist arrived, she said the doctor wouldn’t be in until Friday. When I went back on Friday for the signed forms, I asked what I should do in case of emergency. My friend in Pittsburgh said her doctor had told her to check her vision every day with the Amsler Grid and notify him immediately if she saw any change. At any time of day or night he would meet her in his office.
“Oh, I’m always here,” the specialist said. “Every day, Monday to Saturday, two to six.”
Well, okay, I thought. Maybe this week was an exception.
By Tuesday afternoon I had the results of the blood tests, clearance from my internist and approval from the insurance company. I sent a text to the specialist saying I’d like to proceed immediately. That night I got a text from her receptionist: the doctor was out of the country for two weeks for a seminar.
Right, I thought. I may be gullible, but I’m not that stupid. I went back to the swank eye clinic for another referral.
They sent me to see someone who had a reassuring number of patients waiting. This doctor examined my eyes again, gave me a detailed account of the procedure and the prospects—not as glowing as those given by the Lucentis manufacturer—and mentioned what could possibly go wrong, like bleeding or a detached retina, which would require surgery and hospitalization. Also, macular degeneration was like cancer in that after a period of remission it could come back. She suggested that I have the injections at the other institution where she practiced, which also had up-to-date facilities, but was somewhat cheaper.
The prospect of having an injection into your eyeball is more than a little daunting, although I’d heard from my friend in Pittsburgh and read on the Internet that it’s not as bad as it sounds. In my experience it’s the buildup that gets you. You arrive at the clinic an hour early with a companion because you can’t make it home by yourself. You get eye drops at regular intervals, and your eyes get tested. One machine tests eye pressure with a puff of air and light that zaps your eyeball. You sit and look at a light box with letters as if you were getting glasses, with a lot of “is this lens better or is this lens better?” when you can’t see anything with your right eye but blurry light (very scary). You look through a screen at a green asterisk while red horizontal lines move down in front of you, scanning your eyeball. You’re told, “Don’t blink, avoid to close your eye.” Your head is moved around against the chin and forehead rests. Maybe someone holds your eyelid open.
The staff is friendly, helpful and professional. Even the doctor calls you ma’am instead of talking down to you. You try to ease the tension with wry little jokes. Eventually you are led into the surgical unit, where you are dressed in a heavy hospital gown and get shower caps taped to your head and put around your shoes. You are the only patient in the pre-surgery waiting room. There is a wide-screen television tuned to the National Geographic channel. You ask them to turn it off.
(I will never understand why someone needing to prepare herself for an ordeal would want to be distracted by television commercials.)
You sit in the dimly lit room, nervous, but actually feeling sorry for yourself, and try to relax. Some of your meditation practice comes to your aid. You know it’s time to accept the fact that you are your age and not fifty years or twenty years younger. Somehow until now, part of yourself was still convinced that aging was something that happened to other people. Do not go gentle into that good night, etc.
You are led into the surgery and seated in a chair, which is lowered so you are horizontal. The surgery team approaches, and your doctor tells you in a wonderfully reassuring, grandmotherly voice that she will explain each step of the procedure to you. The prongs of an oxygen tube are inserted into your nostrils, and you are told to breathe only through your nose. A blood pressure cuff goes around one arm so they can monitor your blood pressure throughout. Your face is wrapped. A gel is put into the eye which is not going to be operated on so that you can’t open it. You get more drops, including the anesthetic. A very bright operating lamp looms over you. You grab the arms of the chair and hold on tight and force yourself to look into the two blobs of light above you. The reassuring, grandmotherly voice urges you to relax—right!—and not to move. You don’t relax, but you don’t move either. By God, you don’t move. You feel a little prick. The voice tells you it’s over. You see hazy red, which you’re told is only the light. You’re unwrapped and led back into the pre-surgery room, where you get drops every five minutes.
Then something very strange begins to happen. When you were sitting there before, trying to focus on your breathing, trying to call on whatever resources were available to you, you were only partially successful. But now that the ordeal is over, peace begins to descend. You have thirty minutes to sit with your eyes closed and to meditate. You think of the people you’ve known who’ve referred to living with AIDS as a spiritual experience and to dying as the last great adventure. Now you think maybe you understand a little.
At least that was my experience.
After the injection the doctor examined my eyes, and said the injection had gone well. I thanked her for her wonderful bedside manner. She thanked me for not moving. The same young man who had given me drops put a patch on my eye. I had to go home and stay there for twenty-four hours to avoid anything like dust getting into it.
The second injection was on the right eye, which is a lot worse, but the doctor thinks the degeneration is slowing down. Afterward I told her I could tell the needle went further in.
“I faltered a little,” she said.
Without thinking, I blurted out, “You’d never get an American doctor to admit to that.”
No, no, she said. There was no damage—no harm done.
I hastened to explain that I was admiring her honesty. In the States, where liability insurance had a stranglehold on health care, the story was totally different.
I was thinking of the time, decades before, when I’d had a spinal tap. The pain was unbearable, and then I passed out. Or as I told the doctor later, I’d learned more about color theory in thirty seconds than I would have in two years of art classes. He called it an epileptic seizure, had the sides of my hospital bed raised, limited my movement in the hospital, allowed me to smoke only under supervision and generally scared the shit out of me. I was babbling about this to the one liberated nurse in the hospital, and she said, “That wasn’t a seizure. He got the needle in wrong.”
Thank God for honest health care professionals.
So, where do we go from here? After the first injection, the doctor recommended two more in the left eye (the good one) to prevent continued degeneration, maybe no more in the right eye, where the more extensive damage seems to have stopped. For what seemed like years, I got drops in both eyes four times a day. “Oras ng patak!” Fe said. Time for eye drops. I ate a boiled egg every day. I wore my shades when I went out.
At my last examination on November 3, the doctor said the leakage of fluid from the retinal layers in the left eye seems to be stopping. The center of the right eye is now mostly scar tissue. Little chance of any improvement there, but probably also not much more degeneration. I have her permission to swim in the pool, and I’ll wear goggles for UV protection. That is, when the rain stops and the air heats up again. I try to muster up the courage to measure myself on the Amsler Grid, which means looking at the chart I have taped to a bookcase. The test you can do online seems to require practice and skill.
Most importantly, because this thing is also a matter of mind and spirit, I know that yet again I’m being shown that I’ll get what I need.
P.S. A friend in the United States informs me she’s seen public service announcements that people need to start getting their eyes checked for age-related macular degeneration after the age of 55. The friend from Pittsburgh was younger than that when hers started.