Living with Glaucoma

Editor’s note: In honor of World Glaucoma Week, Steph McCoy has written this post about her experience with glaucoma.

By Steph McCoy, VisionAware Peer Advisor

My first exposure to glaucoma, a group of eye diseases that damage the optic nerve and can result in vision loss and blindness, was becoming aware of my grandmother using eyedrops everyday. When I questioned her as to why she had to use eye medication she explained that she had this eye disease called glaucoma and using the eye drops would prevent her from going blind.

As a young child to hear the word “blind” being associated with any disease was frightening (mainly due to misunderstanding blindness) and I vividly remember being afraid that one day my grandmother would lose her eyesight because of glaucoma. Needless to say for years after learning about my grandmother’s diagnosis I was gripped with an all-consuming fear that one day I too would face this awful eye disease.

Receiving the Diagnosis

About 40 years later I did in fact receive my own diagnosis of primary open-angle glaucoma but it didn’t happen the way I thought it would. With many conditions you go to the doctor, they perform an examination, and either provide an immediate diagnosis or order additional testing to determine the cause of your issues. In my situation it didn’t quite work out the way I would have expected because it took a great deal of time to get to the diagnosis.

Like most people who have glaucoma, I didn’t have any symptoms to warn me that I had the disease. However, due to being under the care of two eye doctors for a different eye condition called macular holes, thankfully my consistently high eye pressure, technically referred to as intraocular pressure (IOP), was being carefully monitored.

Tono-Pen Applanation Tonometer. Source: Courtesy Karanjit Kooner MD and William Anderson, photographer, University of Texas Southwestern Medical Center, Dallas

While most eye care professionals define the range of normal IOP as between 10 and 21 mm Hg [i.e., millimeters of mercury], which is a pressure measurement, my range was running around 30 to 40 mm.

Since I experienced the loss of central vision due to the macular holes, it took a considerable amount of time for me to receive a definitive glaucoma diagnosis. For months my retina specialist and ophthamologist monitored my increased eye pressure for changes. This meant I had to have my eyes examined every three months but it was a minor inconvenience to maintain my remaining vision.

Understanding Glaucoma

After my central vision loss, then learning that glaucoma affects peripheral vision, I almost felt like I had a double whammy. Though it was a frustrating time in my life, it was comforting to know that I was in good hands with my physicians. They constantly communicated with one another and kept each other up to speed on the progress of my condition.

Eventually my retina specialist put me on a eye drops on a trial basis to see how I would fare. Xalatan, the prescribed eye drop, is a medication that lowers eye pressure by relaxing the eye muscles to allow better drainage and improve the outflow of fluid. The eye drops worked remarkably well, but the moment I completed the trial period, my pressure once again increased dramatically.

When it became apparent that I did in fact have primary open-angle glaucoma I was told that I would need to take the eye drops for the rest of my life to manage the disease. Once the diagnosis was confirmed my ophthamologist took over my case.

Though I had many different eye tests because of the macular holes, the first test to measure my visual field, the perimetry, was like a walk in the park. At first glance the machine, a “perimeter,” looked like some sort of space-age device. Once I was assured no pain was involved with the testing, the rest was easy. With one eye covered with a patch, I was instructed to focus on a central spot while small white lights of varying brightness flash at various points around the bowl. Then I was asked to push a button each time I saw a little dot of light within my visual field. The results of the perimetry test indicated that there was little damage done to my peripheral vision, which was a good thing as I had to rely on it to safely navigate.

Maintenance Is Key

What I’ve found through my experience with glaucoma is that once it’s diagnosed it becomes a life-long maintenance program to protect your remaining vision. With World Glaucoma Week held this week, you really owe it to yourself to take good care of your vision.

In ending, my advice to those over 40 years of age or in high-risk groups boils down to 5 simple bullet points:

  • See your eye doctor regularly
  • Ask questions
  • Get a dilated eye examination
  • After diagnosis get a second opinion
  • Keep up with your prescribed treatment plan

Other Resources

Be sure to read our newest resource Patient’s Guide to Living with Glaucoma by Stuart Carduner, who also is a glaucoma patient.

Also be sure to read other blog posts related to glaucoma and glaucoma research.