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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.  
http://www.cdc.gov/parasites/acanthamoeba/gen_info/acanthamoeba_keratitis.

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. 


25 comments:

Heffalump said...

Wow Connie! What an awful experience to have to go through! I hope that the next transplant is successful and I applaud your good attitude through all of this!

Julie said...

Oh my goodness! Thank you for sharing this. You are amazing. I am so so sorry you have had to go through this. I will add my prayers to the many others being offered in your behalf. Your attitude is inspiring. You CAN do hard things!

Ann Marie said...

Your positive outlook is refreshing and amazing! You are a wonder woman! I will add you to my Temple prayer list.

Love you lady.

Lee Pettit said...

Thank you for sharing. So glad you are feeling better. (Love your writing style, by the way...)

Lauri said...

Dearest Connie I am so sorry for your ordeal. As usual your strength and humor prevail, much like you have always done. You are truly an inspiration. Much love to you my sister.

Kimmie said...

My sweetest friend Connie... You truly are my greatest inspiration and I admire your positive attitude, and the fact that you can still sprinkle in humor well! I'm SO glad you posted a photo of your eye... That was very brave! It actually made my eye hurt and made it hard for my eye to see. I can't imagine the pain and sadness you had to experience! There isn't a day that goes by that you aren't in my thoughts and prayers! I wished I lived closer and I could have cried with you and ate Peanut M&M's together! I hope that the next few surgeries, will be positive and successful! I wish I could wave a magic wand and make this horrible tragedy go away, but, unfortunately, that's not how life works. All I know to do is to tell you how much I love and admire you and that you have deeply impacted my life and many, many others for good! I'm so glad I was lucky enough to have crossed paths with you... It's such a great honor to be able to call you my friend! You are an angel and one of the most kind, compassionate and positive women I know! "Chin up" my friend and keep smiling and making other people's days!
(PS... your list of positive things at the end of your post reminds me of the last blog post I did! Great minds think alike!) :-)

yvonne said...

You continually amaze and inspire me. You are truly a woman of faith, and I am so blessed to call you my friend.

Melanie said...

Dear Connie, I'm so glad I know you. Thanks for sharing your strength and testimony. I'm so sorry you had to go through all this! But I've learned so much from you. We'll join the many prayers of your family and friends and hope the next surgeries go well and you will regain your sight. Love you!

Jenny Lynn said...

Well, I am holding back the tears this morning after reading and enjoying your testimony. It comes at the perfect moment. I am about to go have surgery, with a scope on my throat this morning. It will be my 3rd one in 3 months. I am not sure if this will be it or not. I was praying and just wondering if God would hear me. I know in my hearts of hearts that he does. I was just being silly to even question. I am grateful for your willingness to share such a tender and sensitive experience with everyone. I will be keeping you in my prayers that you will continue to heal and regain your eye sight.

Robin Halverson said...

I am sad that such an awful thing happened to the nicest person in the world! Wear your eye patches with pride. Your are surviving with a good attitude and with many people who love you!

Welcome to the Garden of Egan said...

Wow! That is an amazing story. I had no idea about the strength of those little critters. So your first treatment was actually making them stronger!
Of course that's not the first diagnosis you would think of.
It sounds like you have an outstanding doctor.
You are in my prayers my sweet friend. It was fun to share a little texting with you the other night as I was all being NCIS.

I agree with Kimmie, it was brave to post the picture. I have never been able to wear contacts because I can't stand putting anything in my eyes. I can't imagine all those eye drops! You are a patient soul to endure all of that. I wouldn't have had a pity party, I would have been the Mardi gras of pity.

Prayers and hugs sweet friend

mCat said...

Oh my goodness! I am so sorry! And just this morning I was murmuring that the lasik I had wasn't warding off the natural changes in sight and that I was being inconvienced. You have given me new perspective. And the testimony you share is inspiring!
xoxo

Grandma Honey said...

Thank you Connie for sharing this because it was so humbling and actually uplifting to read. Uplifting because you are a tremendous example of noticing and looking for the positive during such hard times. I also know to be true what you said about prayer.Love and prayer and the most powerful forces we have.

I'm glad you were brave and pushed the post button on Facebook today. You will never know how many people you have helped by sharing. I know you said some things I needed to read today. Suddenly my problems seem very tolerable. You are indeed an inspiration.

Wynette said...

I am sorry I haven't kept better track of you. What a journey!!! What a great example for me and reminder that being positive and looking for the good about everything can only help. Hang in there Connie and yes, that was a scary picture to see of your eye. You are one very special lady.

Kazzy said...

I love you. I love your spirit and your courage. I love your attitude. I love your eyes. Always have and always will.

You are a hero.

Valerie said...

I'm so sorry that things still aren't right with your eye, but you are an amazing example of perspective and positivity. It all sound horrible to go through.

Rachel said...

I love you Connie! Sending lots of positive energy your way! It breaks my heart that one of the best people I know had to go through such an ordeal. Here's hoping things continue to get better!

karen said...

We'll I wrote you a comment a day or two ago and it disappeared! Suffice to say that I experienced something similar last year but not nearly to the degree of your poor eye. I didn't realize at the time how bad it could have gotten but your story brought it home! Now I'm understanding why the doc was so concerned, while I was just merely annoyed that I had to forego makeup and contacts for a few months. Love your attitude - hope all goes well. I'll be rooting for you!

Sue said...

Boy have you ever been through it, and how I admire your pluck and fortitude. You are in my prayers, my friend.

Nancy Face said...

Oh dear Connie, I am weeping for you right now. I am so sorry you have had to endure this trial. I wish I could give you a hug in person! (((HUGS))) ♥♥♥

Betty said...

This post hit me hard. I don't usually cry when I read blog posts, but this one did it. You are amazing and I admire you so much! What a scary thing for you to go through and I don't see a hint of "woe is me". Thank you for being a rock and thank you especially for the warning. I will tell my boy that from now on, he will remove his contact before he gets anywhere near water!

Saimi said...

Oh my golly Connie, what a terrible ordeal!! I am so sorry!

Mimi Sue said...

You have been through so much!! We all take so much for granted! Love your great attitude and you're right, life is good if you can still eat peanut m&m's!! Mimi

LKP said...

you.are.AMAZING! i sure love you lady! i've often wondered how you've coped in the day to day of this trial. thank you for sharing. i love that despite the complications & irritations of it all, you can still recognize the blessings. ::hugs::

Erin Ann said...

So hard to read your struggles, but your perspective and humor is something I love about you. Thank you for sharing...and lots of prayers the upcoming surgeries do the trick!