In her own words: living with glaucoma
As told to Debra Wood, RN
Laura is an executive living in New York. She was in college when she first learned she had glaucoma. Having lived with the disease for 35 years now, she has been vigilant about not letting it get her down. Here’s her story.
What was your first sign that something was wrong? What symptoms did you experience?
I was 19, at college, and noticed my eyes would tire while reading. There are no early symptoms with glaucoma, which is why it is imperative to be tested, regardless of age. I had lost vision as a direct result of the glaucoma but didn’t realize it. There was nothing to tip me off—I had no headaches, no blurred vision, no halos, and no dots.
What was the diagnosis experience like?
I thought I needed new glasses, so my mother took me to the eye doctor during summer break. Fortunately, he was very thorough and tested me for glaucoma.
What was your initial and then longer-term reaction to the diagnosis?
I had no idea what the doctor was talking about. I thought, “OK, I have a problem. We’ll treat it and it will go away.” This was 35 years ago, before there was much public awareness. But when I looked at my mother, she had turned white, and I could see the fear. That’s when I knew it was serious.
In a way, having it at an early age helped me. I grew up with glaucoma and have had it my entire adult life. I knew I had to adapt or I would lose my vision. I admit, after 20 or 30 years, doing the drops can get frustrating and aggravating, but we all have something to deal with in this life. Glaucoma is manageable, and if you’re conscientious, you can maintain your vision. I’ve had no vision loss in the last 15 years. I’ve lived comfortably and adjusted to the disease. It hasn’t been a big sacrifice.
How is your disease treated?
The doctor started me on eye drops. I took it seriously and my compliance was excellent. Even so, I needed my first surgery 20 years ago, because my glaucoma could not be controlled with the drops. The surgery creates a new duct in the eye, allowing fluid to drain, which lowers the ocular pressure. The surgery allowed me to go several years without drops. That was excellent. But before I knew it, I had to start back on drops, three different drops, three or four times a day. The subsequent laser and conventional surgery I’ve had has not been as effective as the first procedure.
Now, there are many newer drops to lower the eye pressure, and I take a cocktail of drops, spaced about a half-hour apart in the morning and after dinner. I put the first medication in as soon as I get up, do the next one after breakfast, and the last one before I go out. It’s important never to put one in right after another. You must keep at least 10 minutes in between, but I prefer a little longer. That way, I have some overlap of coverage; the effectiveness doesn’t run out at the same time. If I’m a half hour late with the evening routine, I don’t go crazy about it. I always do them in the same order, so I remember which one is next. After dinner and before bed, I repeat the routine. I see the ophthalmologist every three months, religiously. I ask what the ocular pressure reading is. A low number is uplifting and makes compliance easier.
Did you have to make any lifestyle or dietary changes in response to your illness?
No. There are no lifestyle changes needed. It hasn’t interrupted my life. But, I always wear sunglasses outside, to protect my eyes from wind and dirt, as well as the sun. I take vitamins and go easy on the salt and Chinese food, because of the MSG in it.
Did you seek any type of emotional support?
About six years ago, I began attending a support and education group. The shared experience and information has been very helpful.
Did/does your condition have any impact on your family?
Not really. They worried about my glaucoma more than I did.
What advice would you give to anyone living with this disease?
You can control glaucoma. You don’t have to be afraid of it. Drops are key, and you can adjust to them. Set up a schedule that works for you. If a drop feels uncomfortable in the eye, ask the doctor if it’s possible to switch to a different one. Don’t beat yourself up if you forget a drop. Just get back on track. Call the Glaucoma Foundation or go to its Web site for more information. Read up on the disease and don’t be afraid to ask the doctor questions.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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