Tuesday, March 25, 2014

Acanthamoeba and Other Things I Knew Nothing About

Taken the day before my daughter's wedding, when I had 2 good eyes.

This post could be pages and pages in length but I will condense it so that you and I will both save time.  It may or may not have some gross pictures.  OK, it will.  In a previous post, I talked about having the herpes simplex virus in my eye. This started in July and when I posted about it in August, something else was happening in my eye that I didn't know about.  I'll back up just a bit.  By the end of July, the epithelium over the cornea was starting to slough off.  It caused some pain so I went to my eye doctor.  He put a contact bandage on my eye and I went merrily on my way.  During this time, I was training for a marathon.  I was to the point of running 16 miles on Saturdays.  I ran 4 days a week and the other 2 days, I did water aerobics.  If you know what's going to happen, then you're a lot smarter than I am.  I had no idea it was wrong to wear contacts in a swimming pool.  I've done it for years.  However, this time, I had a "chink" in the armor because of the tiny area in my cornea that had sloughed off.  Did you know that amoeba live in water, including chlorinated pool water? Well, they do. Did you also know that amoeba can get in your cornea, multiply and eat your cornea?  I know that now!  It's called Acanthamoeba keratitis (AK). 

Acanthamoeba keratitis is a rare but serious infection of the eye that can result in permanent visual impairment or blindness. This infection is caused by a microscopic, free-living ameba (single-celled living organism) called Acanthamoeba. Acanthamoebacauses Acanthamoeba keratitis when it infects the transparent outer covering of the eye called the cornea. Acanthamoebaamebas are very common in nature and can be found in bodies of water (for example, lakes and oceans), soil, and air.

In the U.S., most AK cases are in contact lens wearers.  I'm learning that we shouldn't wear our contacts in the shower, swimming pool, lakes or hot tub.  NEVER soak or clean your contacts in tap water.  Use only commercial grade lens cleaner and soaking solution. Consider yourself warned!

 OK, back to me.  When I went to my cornea specialist, the end of July, he was pleased with my progress in healing from the herpes simplex.  My eye looked normal and the cornea was healing.  At the beginning of August, my eye became very inflamed, and my vision was limited.  I went back to the eye doctor and he assumed the herpes virus took a turn for the worse.  He increased the dosage of steroid drops and had me return in a few days.  I learned something else in this process.  Amoeba on steroids are much more aggressive and become stronger.  It took almost 3 weeks to diagnose my problem. By then, my cornea was extremely cloudy and my vision was gone.  I could see light and shadow, but no images.  My eye was sensitive to light, and there was a lot of pain.  My head ached constantly.  I was sent to the Moran Eye Center in Salt Lake City where I was diagnosed by using a confocal microscope and scraping the cornea for a culture.  I left the eye center with 3 different kinds of pills and 8 different drops,  NOT ONE was a steroid drop! :)   I was to put half of these drops in my eye every hour, then the other half the next hour. The doctor let me know that what I had was the worse kind of eye infection and some people have lost their eyesight and/or their eye(s) because of it.  I was overwhelmed and scared.  I went in to the restroom at the eye center, while waiting for all the prescriptions to be filled, and had a little bit of a sob session. 

I work as a speech technician at an elementary school.  School was starting the day after my visit to Moran.  Needless to say, I didn't go.  In fact, I didn't go to work until September 27th.  The days in between were filled with weekly doctor visits, audio books (it hurt to look at a book, phone screen, TV screen, light, or pretty much anything), prayers, pacing, new grand babies (it helps to hold a newborn baby while pacing), sleepless nights, and pain killers.  There were many funny, wonderful, and inspiring things that happened during that time too.  But, like I said at the beginning of this post, I'll try to condense it. 

Nothing better than holding a newborn baby.  Glad he couldn't see that his grandma was a pirate!

The first week in October, Dr. W., my cornea specialist, was concerned that the AK was getting worse.  He sent me back to the Moran Eye Center for another confocal scan.  It showed that the amoeba were dying off, but now I also had a fungus infection!    I was prescribed more drops to put in my eye every hour.  It would take up to 40 minutes to get all the drops in my eye, then, twenty minutes later, I'd have to start over again. I was a slave!  
Almost all of these drops needed to be refrigerated.  I couldn't leave the house without having an insulated "eye" bag with ice and my drops.  I used a spread sheet to keep track of all of it. One of my drops to kill the amoeba was a diluted pool cleaner. 

For the first time, I felt it would be better to just remove my eye. A few weeks after the fungus diagnosis, Dr. W. stated that we need to remove the cornea because it was getting so thin and ready to perforate.  I didn't know exactly what would happen if it perforated, but it didn't sound very pretty and I was ready to have that diseased cornea off my eye. 

I hesitate putting up this picture.  I know it's gross but this is what was under my eye patch before the transplant. You can tell how even the skin under my eye is affected by all the drops. It would have been perfect for Halloween. 

Having the cornea transplant was the beginning of recovery.  The fungus is gone, the acanthamoeba is gone, but it left a wake of destruction.  My eye is damaged in different ways.  The most obvious being the pressure is low and won't build up.  My eye is shrinking. The cornea has "failed" because it is swollen and cloudy, however, I feel it successfully did what it needed to do.  As of this writing, I'm scheduled to have another cornea transplant. Two to four weeks later, I will have another surgery, where a retinal surgeon will inject silicone oil in my eye to help maintain the pressure.  Hopefully, with these two surgeries I will regain some sight.

What I've learned:
Prayer is powerful.  There were many, many people praying for me. God does hear and answer our prayers. There were tender mercies and miracles during this painful and frightening time and still continue to be.
I am blessed.  This is only an eye.  I can still walk, run, play with my grand kids, be with my husband, work, and eat Peanut M&Ms. 
Modern medicine rocks!  
Acanthamoeba Keratitis is horrible!  (I was going to say, "sucks", but I wouldn't let my kids say that so I shouldn't either) I wouldn't wish it on my worst enemy.  And yet, it's all OK.
Attitude is everything. I had a few pity parties, even got refreshments for the party, but it didn't help.  When I had a more positive outlook, I seemed to heal faster; both mentally and physically.
We can do hard things.