I’ve been struggling since my surgery 5 days ago to keep myself distracted from the pain and discomfort that is glaucoma surgery. Essentially the M.O. of glaucoma surgery is to ‘poke a hole’ in your eye’s surface to allow the excess fluid and pressure that is building up inside to escape. What causes a person to lose their vision to glaucoma is damage to the optic nerve from the extremely high pressure and a retinal detachment or a vein hemmorhage causing immediate and usually permamnent blindness.
When I need distraction, writing is typically the best medicine, though a but of a struggle when you’re trying to look at the computer screen through a pinhole in your unbandaged eye through what appears to be a dirty window screen with holes of vision missing in important parts. When in doubt, lube up the eye with drops, turn the glaring lights down low, and pop a percocet and start typing.
Facebook and physically local friends have been amazing since my surgery, offering dog walks, rides to appointments, a much needed manicure and pedicure, food, frozen yogurt and flowers. I am feeling buoyed by their love and support and feel incredibly blessed despite the scary time I am facing. The surgery itself was easy. All went well, I stayed overnight for observation and broke out in hives from the pain meds, but all looked good the following morning when the bandage came off, and I was sent home for observation.
My best friend flew all the way into CT from Texas to stay with me during the first 72 hours of my recovery, helping cook, walk Elvis and keep me from moving too much. I felt pretty good, and had a nice time with her, though the evenings made my eye pretty sore and tired. We even had a nice outing to Target to pick up some storage stuff for my house, and she was sweet enough to organize all my medicines in the closet before her departure. Then came Saturday.
I’m not sure if the nerve block from surgery finally wore off, or if it was the mere action of walking around on Friday at Target, but by noon I was in crippling pain, with a swollen eyelid and tears pouring down my face, causing my nose to stuff up and run constantly. The stitches in the eye itself were incredibly uncomfortable, but one would think after 13 surgeries that I would be used to suture pain. I tried hard to distract, and was hoping to be able to wean off the pain meds to no avail. In fact I had to increase them, which both alarmed me and pissed me off.
I knew from experience that I probably didn’t have an infection, which would be the main concern with increased pain and swelling, as the vision itself remained relatively good thanks to the new lower pressure that was now inside my eye- a low of 10 compared to a dangerously high 45 prior to the operation. I knew that running the 60 minutes north to Yale Hospital on the weekend would only be necessary if I had a change in my vision that indicated a problem with the pressure or infection, and that I should just try to tough it out.
I was incredibly disappointed that my triathlon sponsors, a local juice bar called Green and Tonic, and my training sponsor, EHS were going to be at a local 5K supporting some of my fellow athletes on Sunday, and was determined to go cheer them all on if I could. Saturday night I was curled up in the fetal position in tears, but I also knew that my mornings were relatively pain free, as my eye would stay nice and still overnight, and I could lubricate the stitches that were poking me in the lid with lots of ointment to make myself more comfortable. I was banking on a nice easy morning of sitting at the booth and saying congratulations to people when they crossed the finish line, and being home by ten for a nap.
Sunday morning rolled around, and I woke up in a surprising amount of pain. I think I pulled the eye patch too tight overnight, and the added pressure caused additional pain. I decided to go to the race anyway, as a friend was picking me up, and besides, I thought to myself, “What’s two hours of sitting in a chair outside versus sitting on the couch? Nothing!” So off I went.
The race was just as much fun as I had hoped, and I was excited to see my friends and cheer on lots of young families out for a fun Sunday activity with Elvis. He and I were getting cabin fever, and the fresh air felt great, although the sunshine was slightly torturous to my delicate eye. My friend dropped me off at home, and I awaited my friend to stop in and take Elvis out to pee.
Like a gusher, my eye suddenly started pouring liquid out of it. I gently dabbed constantly with a tissue, but it was becoming increasingly painful. I took a Percocet. 30 minutes later, I was worse. I took another. At this point, my friends Peter and his wife Karen just happened to text me to say they were around the corner, and offered a dog walk for Elvis. I knew that I’d be asleep soon from the pain meds, and gladly accepted the offer for help.
Pain meds make me animated and chatty. I felt better and distracted by their awesome family, and was grateful for the much needed visit. I forgot my pain for a couple of hours and focused on being entertained. within three hours, reality came back to bite me, and the meds wore off. I was hesitant to take them, as I knew that my pain would probably increase in a few days when the scar tissue began to rear its ugly head. I wanted to save the meds for when it could potentially be even worse, but it became obvious that wasn’t going to be an option. 10mg was barely touching the pain enough that I could sit still without tearing up. I tried drops, kept in the fridge for comfort, and nothing seemed to help. I prayed for 7pm so I could justify going to sleep as soon as it became dark.
In a fit of tears and medication, I called the doctors at Yale and begged them for relief. I had read on my Glaucoma Support group’s Facebook page that the doctor could install a medical contact lens to protect the sutures and relieve my discomfort. I wanted that and I wanted it immediately. The on-call physician agreed that it may be an excellent idea, but that my doctor and all the residents were at a conference on Monday and would not be in the office. He checked my surgeon’s schedule and told me to call first thing Monday.
This morning could not have come soon enough. I jumped out of bed, ready to speed dial Dr Tsai. While I was waiting for the receptionist, ironically the other doctor beeped in who had assisted in the surgery. She told me to get up to Yale immediately. One phone call later, and a great friend picked me up. I was discouraged once in Dr. Tsai’s office that he didn’t want to do the lens I had hoped for. He explained that the lens could cause infection and that the delicate bleb or blister that they create on the surface of my eye could become more inflamed with the actual contact in place and cause more discomfort than I was already having. Therefore, he opted to trim the stitches a little bit to relieve some of the irritation and asked me to come back in two days.
I was frustrated, but did notice an immediate improvement in my pain level with the trimmed stitch. I explained to him that I was running low on pain meds, to which he replied that I’d probably no longer need them now that he had taken care of the offending issue. I prayed he was right, and prepared to leave. He grabbed my shoulder after he took a long look into my eyes. His expression told it all. “Amy, the scar tissue has already started, as we had feared.” It was like the other shoe finally dropping.
The surgery was a necessary emergency surgery due to my extremely high pressure. I have an additional eye disease called Uveitis that causes extreme keloid scarring in the eye, making glaucoma surgery extremely difficult and likely to fail. His news meant that the scar tissue was within a few days of beginning to interfere with the delicate surgery, and that the relief of high pressure I was currently feeling was only temporary. He was essentially preparing me for battle. I knew this was going to happen, so I was a lot less frightened than I had anticipated. In an odd way, it was a relief to get the news. At least I knew what I was dealing with.
So the game plan is to come back in two days and see how bad the scar tissue is starting to be. Despite his best effort to inject a special chemo drug to inhibit the scarring, and essentially ‘eat’ the scar tissue, this was happening. What was likely to follow was pain due to the scar, increased swelling, and more surgery to remove the lump of scar tissue that will block the hole that he just created. This is where science truly becomes art. I gave him a firm handshake, and thanked him for his work and candor, and said, “let’s hope for the best.”
Now I’m home, and dealing with more pain again tonight, but in a better place knowing that the worst is happening, and I’m prepared. I’ve been playing with my Iphone all day with the cool VoiceOver function that allows it to be a very fancy screen reader for the blind. It’s a built in accessibility feature for the phone that allows the screen to be completely black, and everything is read aloud and available to you via touch and audibly. You can use the phone and all its apps without any sight at all, reading emails, Facebook posts, weather and everything. I am so grateful to a blind friend who gave me a crash course two weeks ago and I’ve been practicing all day.
Where I’m losing my mind is in that I’m in the best shape of my life, and yet I’m not allowed to cough, sneeze, strain, hold my breath, bend over or lift more than 5 pounds and not allowed to do any walking. Apparently the stitches are very delicate and any movement causes the body to produce too much fluid in the eye, which can undo the delicate surgery, or increase the amount of scarring. I have to remain very still. This would be fine if viewing television or reading a book was comfortable, but it’s not. It hurts honestly, and for that I’m angry.
What I want more than anything in the world to do right now is to be floating in the pool at the YMCA, diving underwater and staring down the long black lines into the distance. I love to watch the way the light plays off the bottom of the pool at different times of the day. I feel sometimes like I could stay down there forever, and just want to explore every inch of that beautiful aqua colored cavernous space. It is so quiet and peaceful there with the gentle hum of the pool filters working hard and the white noise of the air conditioning system in the pool area.
I love to peek out at the end of each lap and spy my beloved guide dog Elvis anxiously watching my each and every stroke. His eyes follow me intently from one end of the pool to the next, never deviating even when his name is called by an admirer. Here, I feel safe, loved and in my element. I can play and goof off like a 6 year old, diving into the water when the lifeguards are turned away, and do underwater somersaults until I’m dizzy. My workouts take on a yoga-like rhythm where I stretch and glide, focusing on power and grace with every pull of my outstretched fingers. I feel fast and light and agile at once; the only place where I truly am all of those things. The air is cold, so I never like getting out, and it’s usually once Elvis has decided it’s time to go and stands up to stretch in boredom that I finally hoist myself reluctantly onto the deck.
I want this. I want it now. I’m very frustrated in knowing that it’s not possible at the moment due to an open wound in my eye, and unlikely for weeks, perhaps a month or more. For now, I’m setting my goal on being at the San Diego Triathlon Challenge with the Challenged Athletes Foundation October 20. My fitness is enough that I will handle the race with no difficulty if more surgeries impede any training, which they likely will. My prayer is that I get to do either the bike with a good pilot on my relay team, or I get to swim the mile in stunning La Jolla Cove with the thousands of other athletes that day to raise money for CAF. They have done so much for me, and given me a wonderful way to be free and express myself through exercise, that I want so desperately to be there and give back to them. I have to remind myself that my health is the priority, but I’m also hoping that worst case scenario, I’ll at least be able to volunteer if I cannot race that day. It gives me something to look forward to when I’m sitting on the couch trying to see the tv through my dirty screen of pinhole vision, and staring at the unopened book my my bedside. In the meantime, I will continue to count my blessings. My wonderful Guiding Eyes Dog Elvis, who has patiently laid by my side for the past 4 and a half years, and the incredible family and friends I have rooting for my recovery and future eyesight.
Sometimes it takes a Face-Time video call on your Iphone from your niece to remind you that it’s the wonderful little things like watching her incredible talent, while drawing you a picture of a wolf from 50 miles away, or helping her organize her stuff for school via video in her bedroom, or talking about boys with her for the first time, and laughing hysterically while her parrot yells at the pet rabbit to shut up, or laughing as her little sister shows off her new bike skills in the background, that can make your recovery feel like nothing in the scheme of things.
Honestly, if that awesome wolf she drew me is one of the last pieces of art I get to see, I’ll be pretty content in knowing that my niece is going to be ok as a teenager. Eyesight seems pretty trivial when it comes down to having a good belly-laugh with an awesome 12 year old who is wise beyond her years. I am one lucky girl between her, my family, friends, doctors and my incredible sport. Now to get back in that damn pool……
