The Highs and Lows of End-stage Glaucoma

Standard

Image

One minute I’m standing on a bar in the Bowery, wielding a sword while chopping off the tops of Champagne bottles, and the next I’m sashaying around a hospital room hooked up to an IV Pole.  My, my, glaucoma is a roller coaster ride…..

 

I want to go back and kick the damn doctor that told me, “Glaucoma is a piece of cake compared to your severe Uveitis.  A regular ‘walk in the park’ compared to all you’ve been through with the chemo and steroids for treating your Uveitis.” Yeah, this week, “TOTALLY was a walk in the park.  NOT!”  When I had my steroid implants put in 5 years ago, it was explained that my chronic Uveitis had progressed to the point that I was left with no other treatment options than to to place Retisert steroid implants into my eyes to control the inflammation that was slowly robbing me of my sight.  The biggest risk of these implants was that 65% of patients developed Glaucoma from the high doses of steroids.  We agreed this was an acceptable risk, as the alternative was a 100% chance of losing my sight to the advancing disease.  His big selling point?  “Glaucoma is SO treatable compared to the type and severity of Uveitis that you have. We’ve got you covered.”  

 

I’d like to go back and kick him.  Hard.  It has been 22 months since I developed severe glaucoma.  First in the right eye, causing me to have emergency Ahmed valve surgery to release the high pressure, and now 4 months ago my better eye (the one with the most vision left after all the Uveitis damage) has succomb to Glaucoma.  Glaucoma in older people isn’t too bad.  It can be very treatable with prescription drops and surgery.  In young people who have scarring keloid issues like myself, it is a serious battle to save one’s sight.  I have had 9 surgeries in 22 months for this glaucoma, and more is imminent.  

 

I told myself after years of chemotherapy and steroids and being VERY ill from the Uveitis that I could take anything.  My threshold for pain would be raised, and I was prepared to do battle against this unseen enemy.  I had no idea how much of a roller coaster it would be and how much physical pain and emotional disappointment I would face.  My life would stop and start and stop and start many times due to surgery and procedures that may or may not work.  Right now, I’m trying to stay focused on my first National Championship triathlon race in May with my friend and guide Caroline Gaynor.  I’ve worked so hard and had so much short term success that I’m ultimately determined to have a great race and experience.  I refuse to let this disease win.  But right now, it’s winning.

 

Long story short, my pressure has been LOW in the left eye since surgery in September.  My pressure skyrocketed right before my final race of the season in triathlon, and I had emergency Trabeculectomy surgery where they basically poke a hole in your eye to create a pathway for the excess pressure and fluid to escape, thus saving your retina from detachment and impending blindness as a result.  However, the hole they created is working TOO well, and my eye is essentially deflated, and the retina is ‘falling off’ the back of the eye because there isn’t enough pressure to keep it in place.  

 

They’ve tried injecting blood to create a clot to plug up the hole.  They’ve injected a visco elastic gel to try the same thing.  They tried BOTH and it still failed.  Ultimately they could do the ‘easy’ thing and put a stitch in to close the hole up, but that is not a perfect solution either.  So, last friday, I had a VERY thick gel called Healon 5 injected, but it was TOO thick and my pressure went from a low of TWO to FORTY EIGHT within seconds.  A normal pressure should be about ten.  The doctors immediately rushed around the office trying to grab a syringe to take the Healon OUT of my eye.  Here’s how it played out.,,,,,

I’m sitting in the exam chair in Dr. Tsai’s office.  He’s sitting a foot in front of me, looking through the slit lamp to watch while his Fellow injects the Healon into my supposedly thoroughly numbed eye.  He gives the Fellow the order. “Ok, start pushing.”  I feel my eye growing larger, re-inflating and getting filled with the thick gel.  “Ok, stop,” he says.  I sit back in the exam chair, and let out a deep loud exhale.  Everything goes black.  

“Um, excuse me, but I can’t see anything,” I say with curiosity.  “What?” asks dr Tsai.  I repeat myself.  “Everything is black.  Is that normal?” I am trying to stay calm.  He orders me to lean forward to look through the lamp into my eye.  “Damn.” And with that, Dr Tsai, his Fellow, and the Resident all rush out of the room.  Mom is in the corner holding Elvis to keep him calm.  I call him over to me.  “Come here buddy.”  He happily obliges and wiggles up against the chair in nervous body language that only he and I know.  The wags are tiny, and he’s making tight circles and ‘bumping’ me like a shark to get a soothing butt scratch.  The doctors rush back in.  “Get a ten gauge needle. We have to do this fast.”  Mom recollects Elvis, who is not too happy to be separated from me at the moment.  

“Ok Amy, You’re having an occlusion of the central vein in the eye.  The pressure is 48.  We need to take some fluid out to get the pressure back down to restore the vision.  You ready?”

“uh- ok, I guess?  Can you put more numbing drops in to be safe?”  

“No problem Miss Dixon.  I’m so sorry.  You’re being a real trooper.  Just hold still and we’ll get this for you.”

“Trust me, I’m not Moving ANYWHERE” I joked.

“Ok Dr. Lee- pull!” commands Dr Tsai.  “I am pulling. Nothing’s coming out”

I start to hyperventilate…”What do you mean nothing’s coming out?”

Dr. Lee responds, “The fluid is too thick for the needle.  We need a bigger needle.”

“Great” I joked aloud.

The three of them scramble into the other exam rooms, opening drawers and cabinets in a desperate search for a larger needle to get this shit out of my eye as fast as possible.  I look to my mom who is looking horrified at the ordeal.  “Well this is fun” I joked.  “You’re being way braver than I am right now” She said.  “Not really,” I replied.

The three of them come back in and get into injection position again.  The needle goes in.  I feel a searing, stabbing immediate pain and jump straight up out of the chair.  “What the FUCK!?” I yelled.  “WHY did I just feel that!?  I thought I was NUMB?  What the hell?” I was hysterical.  

“I’m so sorry Miss Dixon, we must have hit the conjunctiva.  It’s a really sensitive part of the eye.  I’m so sorry.  Please sit down.” 

“No Freaking way!” I yelled.  “Not until you guarantee that I’m numb again.  Not happening.”  

The Fellow douses my eye with a sufficient amount of anesthetic and I sit back in the chair.  The next needle won’t work either.  I start to laugh nervously and hysterically.  Elvis has now wedged his body between me and the doctors, feverishly licking my hand in worry.  He is being difficult in that he won’t go back to my mom in the corner.  I finally convince him and keep talking to him as they grab the fourth needle in an attempt to retrieve the gel from my eye.  

The needle is in, “Keep pulling Dr Lee,” says Dr. Tsai.  “It’s coming out.  Steady there.  Ok, that’s good.”  The pressure was now a much more comfortable 20.   “Miss Dixon, if you become nauseous tonight or experience severe pain first thing in the morning, just come back up.   I suspect that your pressure will climb back up high first thing tomorrow morning, and we may need to take out more gel if that happens.  

 

His predictions were correct, and after a rough night, I returned the following morning to have more fluid taken out via a very large gauge needle.  I had the misfortune of seeing this needle prior to the procedure, and it appeared more like a spinal tap needle than what one would expect to be put into a tiny and delicate eyeball.  I nearly fainted at the sight.  We were able to get the pressure down to a comfortable 6 and he suspected that it would stay there.  The final piece of wisdom that he left me with was this.  “The reason you’re having so much trouble with this trabeculectomy is this.  With a VALVE surgery, most of the ‘work’ is done at the time of the operation.  The hardware then does the heavy lifting from there.  In the case of a trab surgery, only 50% of the work is done during the operation itself, and the rest is done in the ‘tweaking’ postop with injections and other procedures.  The good thing about this is that we can really customize this surgery and have a lot more finesse.  It’s a lot more delicate and difficult, but in the end, we can have a much more positive outcome than with a valve.  I know this isn’t what you want to hear, but I AM optimistic that we can get you to a good place with the vision in that eye, but it may take a lot of finesse and patience on your end.”  I finally understood what he was working toward, and resolved to give him the benefit of the doubt and allow this to play out as it needed to.  I went home and went to bed. 

 

Monday was the biggest trade show of the year for me in my business.  It was the annual Grands Crus des Bordeaux Tasting at the Waldorf Astoria. I swore that no matter what, I would make it there, even if it meant doping myself up on pain meds.  Monday started out great.  My pain was manageable, and the vision was pretty good.   I was SO excited, because my friend who has the same eye disease as I do (AZOOR) , which is extremely rare, was coming into town from the UK and we were scheduled to have a private Champagne Saber lesson at the famous Pearl and Ash Restaurant with wine Director Patrick Cappiello, one of the top sommeliers in NYC.  It was going to be a awesome to have two blind chicks taking a sword and opening Champagne!  This had always been on my bucket list and no matter what happened with my eye, I was determined to accomplish this feat at least once.  

 

The trade show was great, although the lighting was dark, and I struggled taking notes and navigating the tables with Elvis to get near the spit buckets with my tasting booklet, phone, wineglass and pen in my right hand.  I attempted using Siri to take notes and a dictation app, but the cell service was miserable and both refused to work inside the Waldorf.  I went old school and wrote my notes down illegibly with the assistance of a kind stranger who tagged along with me from table to table, letting me know which page to turn to and write upon.  

By 1pm I noticed that my vision was deteriorating and my pain was amping up.  I popped a Percocet and called Yale Eye Center.  They told me that my pressure was probably dropping, and to drink a ton of water to try to keep it up and come first thing the next morning.  Maggie and I met in the lobby, and were like screaming teenagers on our way to the restaurant.  Two blind sommeliers (she is a wine writer for Decanter Magazine in England) headed to wield a sword.  The best part?  Patrick had emailed us earlier to warn us that the entire Sabrage (as it is called in French) would take place with me STANDING on the bar.  And I had thought my days of dancing on bars were over…..I was more than excited!  

 

Maggie and I caught up on all of our recent eye surgeries and wine adventures and got to the restaurant thanks to a very diligent cab driver.  The restaurant was terribly dark, and the waiter was awesome, in that we simply told him any dietary restrictions and dislikes, and he designed a tasting menu around our palates.  Pearl and Ash is famous for Patrick’s incredible list of unusual Loire Valley wines and boutique grower Champagnes, so I was pumped to get the evening started.  Patrick led us down to the end of the packed bar area, and held my hand as I climbed atop the bar top in my high heeled boots and short mini dress.  The sword was as long as my leg, and sharp as could be.  Maggie stayed down on the floor, holding my anxious guide dog, who was jumping up onto the bar stool to let me know his disapproval of my climbing up atop the bar.  He wagged nervously and moaned to get my attention.  It was such a spectacle that everyone in the bar was taking his photo and video taping the debauchery about to commence.  Patrick gave me a brief lesson in the method to sabering the Champagne bottle, and with a solid, swift sweep of my right hand, the cork and bottle neck were flying through the air, hitting the ceiling far across the restaurant.  The crowd erupted in a roar, and I celebrated by wielding the sword over my head like a warrior.  Patrick promptly took it away from me……

Maggie and I returned to our tables victorious. with lots of smiles, cheers, and pats on our back from witnesses to our successful Sabrage, and a congratulatory glass of incredible Jacques Selosse Champagne made its way to our table as a gift from two nice German businessmen celebrating their birthdays at the restaurant.  Bucket list?  CHECK.

 

HOW THE MIGHTY FALL:

By mid dinner, I was in an alarming amount of pain, but was trying so hard to ‘stay in the moment’ and numb it with gorgeous wine that I managed to tough it out.  I was grateful that Patrick sat with us and was being interviewed by Maggie for her article, as it allowed me to be still and quiet and focus on my pain management.  As the evening wore on, the colors in the bar began to melt into one Salvador Dali-esque melted kind of painting, and it appeared that the world had turned to a multi colored sea of candle wax, dripping and oozing from the sky.  As we gathered our coats to leave, the room was spinning, and I began to feel nauseous.  Something was terribly wrong.

I ignored it in the cab to Grand Central, determined to finish my night with Maggie on a positive note.  I covered my left eye to halt the spinning and scurried into the terminal, grabbing two bottles of water at the news stand, knowing that drinking fluid was critical to getting my low eye pressure up.  The nausea continued for the hour ride home, and I immediately went to bed, preparing an overnight bag for Yale in the morning.  I knew that whatever was going on was serious, and with the snow storm, there was no way they were letting me go back home.  But I had had ONE HELL of an amazing day.  I turned off the light, knowing that whatever happened with my vision at Yale in the morning, I had gone out with a bang, and each and every delicious food course, the sword-wielding dance on the bar, and sips of stunning Champagne had been worth it.

 

 

 

Advertisements

4 thoughts on “The Highs and Lows of End-stage Glaucoma

  1. Gosh- I am scarred. You are way ahead of me… and I hope I’ll never have to go through such pain.. I am 35- find out about my glaucoma 2 years ago, had trab and laser that didn’t work, tried all eye drops and still- sometimes forget that I am sick. Some days- when I am in pain or vision is worse- I am thinking about my future …and as you- don’t want to give up- my life/my business/my everyday things.
    Never expected that someone can understand or feel the same as I do- just after reading your post- realized that I am not alone.
    Thank you for sharing it and hang in over there!

  2. Ellen Goldberg

    Amy … Hi. It’s Ellen (friend of Maggie and Lisa Z.). Maggie shared the video from the restaurant – so glad that you two connected. I heard it was really fun. Hang in with all the surgeries and good luck in the race!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s