‘Your eye pressure is ALARMINGLY high.’ Some days I can’t stop thinking about the ‘what-ifs.’: Woman details how infection led to living with glaucoma

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“I’ve had plenty of sinus infections before. They go away, eventually. Even the one I had in early January 2017.  I thought nothing of it, and frankly, was just glad it was gone. To me, it was just another annoying winter cold. A few days after it had cleared, I woke up in the morning with some slight pain around my right eye. It looked a bit red and swollen, but I decided it must just be a stye. ‘It will just go away on its own,’ I thought. ‘Nothing to worry about.’ The next morning it was slightly more painful, and slightly more swollen. I felt a little embarrassed, knowing people at my job would notice. I put on my glasses, took some ibuprofen, and went to work. That day, a few coworkers had commented about my eye, and agreed that it must just be a stye that we couldn’t see.

The next morning, I woke up, and my eye was a bit more red and swollen. It hurt all around my eye if I tried to smile or laugh. I decided to take the day off from work, ice my eye, and hoped the swelling would go down. You see, I’m a Speech Pathologist, and I work with students with emotional disabilities. The day before, one of them actually got very upset and refused therapy when he saw my eye, and I was already feeling self-conscious. I had convinced myself that by tomorrow, it would look better, and I should just rest.

Unfortunately, when I woke up the next morning, I could not open the eye at all, and the swelling had even started spreading to my other eye. I was terrified, but also somewhat humiliated by my appearance when I looked in the mirror. Crying, I called my husband (then boyfriend), who came rushing over to my apartment to take me to urgent care since I could not see to drive. ‘It’s really bad,’ was all I could say to him through tears. It hurt my eyes to cry, but I couldn’t stop. Still, he stayed calm and told me it would be okay. We arrived at urgent care, and I was seen immediately. The doctor took out her eye emergency kit. There was no trauma to my eye that she saw, but the swelling was uniform, had spread to both eyes, and I also developed conjunctivitis at some point over the last day. ‘I think you have cellulitis in your eye,’ she explained. ‘This is very serious. If an ophthalmologist cannot see you today, you need to go to the hospital. If you spike a fever before the ophthalmologist sees you today, you must go to the Emergency Room.’ She prescribed me some drops and a heavy oral antibiotic, and I left.

The ophthalmologist office wasn’t open yet, so I left a message and went to pick up the medicine that was just prescribed to me at urgent care. I am mortified to say that I thought about just taking the medicine and going home, just hoping for the best; looking back, I still cannot believe I wasn’t taking this as seriously as I should have been. As luck would have it, the ophthalmologist’s office called me back while I was still in the parking lot at the pharmacy. ‘Can you come in now?’ the woman asked. ‘We can see you immediately for a medical emergency.’

lady wakes up with swollen eyes and has difficulty opening
Courtesy of Jamie Cohen

I glared at my boyfriend. I knew he’d say I had to go. ‘Yes,’ I said, with mixed emotions. It was then that the panicking began to set in, my mind racing. How did this go from a possible stye to a medical emergency over the course of a few days? I couldn’t believe what was happening. The ophthalmologist agreed with the diagnosis. I had cellulitis in both of my eyes now, as I had waited too long to see the doctor and it spread. He prescribed a different eye drop for me, but agreed with the choice of antibiotic from urgent care, and he wanted to see me in 24 hours. If the antibiotic wasn’t working or if I spiked a fever, I would have to get IV antibiotics like the other doctor had said.

Over the next couple of days, my eye began to look and feel better. Finally at one of my visits a couple of days later, I asked the doctor, ‘How does this happen?’ We discussed the many reasons that a person can develop cellulitis when he finally mentioned sinus infections. Now that the pain was slowly subsiding, I was able to ask him the questions I should have been asking all along. ‘Is there any permanent damage to my eyes?’ This was the one that was burning in my mind.

Once the doctor knew the infection had cleared, we began a series of tests on my eye. The first was a scan of my optic nerves. Since the optic nerve connects the eye to the brain, this was probably the most important of the tests. Again, the panic began setting in. I hadn’t even considered any of this and was regretting my decision to wait to go to the doctor. Fortunately, my optic nerve looked healthy, and there was no damage. The doctor also did a visual field test to make sure I hadn’t lost any of my peripheral vision – all good. Then he checked my intraocular pressure (IOP). This is the fluid pressure of the eye. That is when the doctor said, ‘Your eye pressure is alarmingly high.’ The words did not affect me like they would have if I knew what it meant to have elevated IOP. The doctor hoped that the elevated IOP was a result of the infection, so we decided to keep monitoring it closely. For reference (sources may vary slightly), a ‘normal’ IOP ranges between 12-21 mm Hg, but most doctors will tell you that above 18-20 puts you in a ‘suspect’ category.

lady eye slowly recovered from the swelling
Courtesy of Jamie Cohen

This was the first time the doctor said the words, ‘glaucoma suspect’ to me, and I basically just shrugged it off. I was young. All the research I went home to do said most people develop glaucoma over time as they get older. I wasn’t concerned anymore because my infection was gone. The doctor wanted to monitor me as a glaucoma suspect, and I started visiting the ophthalmologist over the next few years for regular check-ups. It just became routine, and most days I didn’t even think about it.

I continued to see the doctor regularly until August 2019. Everything was normal. My IOP had lowered some since the infection, but I continued to present with elevated numbers between 18-22 in both eyes.  It was around this time that my mother-in-law became very ill, and I missed two of my appointments. I rescheduled it twice, but each time, something came up. My mother-in-law passed away in late October, and my eye appointments were the last thing on my mind.

As time went on, I was feeling pretty carefree about the entire eye situation, and decided I’d make an appointment and get caught up when I was feeling less depressed about losing my mother-in-law, and other things going on in life at the time. I kept telling myself it was silly for me to go see the ophthalmologist so often anyway. Little did I know that COVID was about to enter our world and change everything. I went for the next year without making another appointment to get my eyes checked.

March 2, 2021, one and a half years since my last appointment with the ophthalmologist, I woke up again with swelling in my eye. I did not wait this time and called my doctor right away. Still, I was in good spirits. I actually felt good that I didn’t avoid seeing the doctor like I did the last time. The cellulitis was only in one eye, and this time it appeared that mild trauma had caused the infection. I remembered a few days earlier, one of my dogs had accidentally poked me in the eye and I was now connecting the dots. I wasn’t worried; I had treated it early. I even felt good that I could begin my battery of tests again, since I was way overdue for my check-up.

Once the infection had cleared, we began the same routine as last time. Visual field test for peripheral vision, checking pressures, but most importantly for me during this visit was the scan of my optic nerve.  The doctor came back to tell me that there was a spot on the scan. He said he hoped it might be due to the infection, maybe dry eye caused the spot in the image. He wanted to see me in 2 weeks to repeat the scan.

March 24, 2021, I went back to have my optic nerve scanned. It was on this day I found out there was damage to my optic nerve, and I was diagnosed with open angle glaucoma. The news took me by surprise, even though this was something I had been aware of for the last 4 years. My world became very dark during the next couple of months. I began taking a prescription eye drop called Latanoprost, to lower my eye pressure, but there is no cure for glaucoma. Glaucoma is the second leading cause of blindness, according to the WHO, and a study found that blindness is ranked 3rd for leading causes of fear in people. I began doing more research about glaucoma because I really didn’t know too much about it, and I found out most people do not know much about glaucoma. Doctors do not know exactly what causes glaucoma, but there are many risk factors. Elevated IOP is one of them. Latanoprost has lowered my IOP, and at my last visit my pressures were lower at 14 (L) and 12 (R). The doctor was very happy about this. I’m trying to adjust to all the side effects of the medication. My eyes are dry all the time. It feels some days like there is an eyelash or sand in my eye, but really, they’re just painfully dry. My joints have been aching. I’m exhausted all the time. Crazy how an eye drop can affect your entire body.

I am scared about my future. I am scared that my eye drops won’t work. I am scared that one day I will go blind. I’ve only just started this journey. I chose not to tell most people about the condition. I still don’t know why. Perhaps I’m scared that if I tell people, it will be more real. Perhaps I just don’t want other people worrying about me the way I worry about myself. I do know that every day is different. I do know that I have many changes to make in my life to preserve my eyes, but mostly to improve my mental health. I am more anxious than I’ve ever been, which is not a good thing for someone who is prone to having panic attacks already like I am.

If I could give one piece of advice, it would be to never ‘wait’ to see the doctor because you hope something will just go away on its own. If your doctor wants to monitor you, please let him or her monitor you. I wonder if I had not missed that year and a half of my check-ups, would I have been able to prevent the optic nerve damage from happening? Would I still just be a ‘suspect’ and not actually have developed glaucoma at the age of 36? Some days I feel great, and some days I can’t stop thinking about all the ‘what-ifs.’ All I know is that I will never miss another eye appointment again as long as I can help it, and I will do everything I can to preserve my vision and my mental health. And, if you’re comfortable, share your journey with others. I don’t know why I tried to hide my condition, but I do know that sharing my story feels like the first step toward bettering my mental health.”

This story was submitted to Love What Matters by Jamie Cohen of New York. You can follow her journey on Instagram.  Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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