January 30, 2018 Whereabouts 11 Comments

I have a Parasite eating my Cornea.

This is a PSA and a Request for Prayers… I am days away from my Corneal Transplant!

I know… it sounds bizarre.  Like some weird science show you would see on Discovery Channel…But it is currently my life and has been for the last 20 months.

The summer of 2016 was supposed to be different. Everything was supposed to be different.  I had plans to drive up the Pacific Coast Highway (PCH) with my daughter seeing all the beauty along its way, before she left to go off to college and I started my new life as an empty nester.  It was going to be our last hoorah.. under my roof.   Instead my daughter spent that summer driving me to doctor’s appointments, doing errands, washing my hair and basically taking care of me. Which also created beautiful memories… but not the ones I had envisioned.  I had spent most of that summer in my house with garbage bags on my windows to block the sunshine from getting in. The light hurt.. really really hurt.

Pain like I have never felt before.

Awful, clinching teeth pain.

Excruciating.

If you know me… This is VERY Anti- Amy.  I love the sun.  I mow my own grass, I spend hours gardening and being outside all year long.  I usually walk outside for exercise almost every day.  No matter if it is freezing cold or a humid hot day.  I love being outside, and nothing makes me happier than sunshine.  If it’s a sunshiny day I am immediately in a good mood.  I’m also extremely social.  I love getting out socializing to events around town or just drinking wine on a patio with my friends.  The summer of 2016 I had none of those moments.  Just laid in a fetal position trying to work myself thru this unbearable pain.

I wear contacts.  In the early part of June 2016, I took a trip to Florida.  I took a Jacuzzi bath in a tub that probably had not been used in quite a long time.  This is when I came into contact with these amoebas (parasites), within hours I felt something… I thought maybe a part of my contact had ripped and was stuck in my eye. Little did I know these amoebas were making their home in the jets of the Jacuzzi and I had come into contact with them.   If you are a contact wearer, you know what I am talking about.  It is an occurrence that happens from time to time.  It felt like I had scratched my cornea.  So, I stayed out of my contacts for a few days trying to let my eyes heal.  They never healed.  So, when I got home from my trip I went to the eye doctor.  I was diagnosed with a bacterial infection.  Treated for this.  After about 10 days on the medications I had not improved, but actually gotten much worse. I was in severe pain and my eye was extremely light sensitive.  I called my Dr. a few times and the nurse that answered the phone…  as I described my painful issue…I was told …”keep doing what you are doing”… Which was pouring steroids on it. (the eye drops prescribed for conjunctivitis) … this was creating bionic amoebas, probably making them hungrier…and their source of food was my cornea.  My daughter loaded me up (hat & sunglasses), with my head in between my legs on the way to the dr. appointment because the sun was shining, after the 10-day time period and absolutely no improvement. It had actually gotten much much worse. ( ughhhh that’s why I called 3 times) …  My ophthalmologist saw me for about 10 seconds and sent me directly to the corneal specialist.  He immediately wanted to do a debridement surgery on my cornea. He at that point thought I had a shingle virus pop up in my eye.  The pain I have endured during this process has been absolutely unbearable. I have a new appreciation for the people that suffer from severe migraines and chronic pain.  I spent most of my days in my dark bedroom just lying there trying to get thru the pain. I now know that I was having severe nerve pain, caused by the parasites opening from their cysts stage to their traphazoid stage, and damaging my optic nerves as they ate on my cornea.   After the surgery, it seemed like I was getting better.  I could even see the BIG E!!!  Looking back, we realize, with the debridement he had scraped a large portion of the amoebas off my eye. Which made it better temporarily. But because he didn’t get all of them (of course he didn’t know they were there)… so, I then took a turn for the worse. Because they multiply very fast. The corneal specialist was simply exhausted on ideas and methods to treat me. And he literally saw me every day…even opening up his doors on Sunday of July 4th week..that summer July 4th was on a Monday.. and that weekend everyone was basically off work for a long weekend. But he saw me. He was dumbfounded.  Soon after that…   he sent me over to an external disease corneal specialist.  She looked at me, cultured my eye, came back in and said….  I believe you have a parasite.  It’s called Acanthamoeba Keratitis.   I sat there is shock.

A Parasite.  Actually amoebas- millions of them. YUK!

How?  What?  How do I get rid of it?

This is crazy!

She proceeds to tell me, it is rare.  But is getting more prevalent.  It is called Acanthamoeba Keratitis.  My doctor was first exposed to this disease in the mid to late 70’s.  But it is still very rare.  1 out of 15,000 contact wearers will get this.  And 1 out of every 250,000 people get it.  And I am the one the parasites choose.  I mean… I have always been told I was a great host! :-)  They are found in fresh water sources and sometimes in dirt. That is why you are told as a contact wearer to not put your contacts in tap water and take them out on situations where you are scuba diving, skiing, exposed to fresh water, and salt water.  I really never paid attention to these heeds of warnings.  I have showered, been scuba diving, swam, even walked home in college doing the “walk of shame”-(sorry Mom!) … with my contacts in shot glasses with tap water.  I have done it all in my contacts.. I have been a wearer of contacts since 1984.  So, I had become very comfortable with all the rules.

After the correct diagnosis of this situation.  I went on a very aggressive topical therapy.  I had to take 2 different eye drops, both were compound drops to specifically kill the amoebas.   1 of the drops had to be made in a clinic in Phoenix and flown to me on dry ice because that was 1 of the only 3 clinics in the nation that had the deadly chemical to kill these amoebas.  The other one I had made at the compound clinic here in Louisville.  I had to start taking these drops every hour and during the night every 3 hours.  So those mothers out there who breast fed..flashback.. That is the amount of sleep I was dealing with for months on top of endless pain…and getting used to being blind in one eye.   It was at times unbearable.  I have seen numerous doctors, and many different methods have been attempted, 2 surgeries, numerous other eye drops, needless to say…it has been a long road.  Around late October of 2016 I turned the corner.  I had new lease on life.  When you go from having unbearable pain to having very little pain. You realize how lucky you are.  I have been blind in my right eye since the summer of 2016. My eye had been thru numerous appearances. It has looked neon at times, chalky, blue (I have brown eyes) …it has taken on some very different looks. Which I will hesitantly share with you. I literally could not be exposed to any light at all from June 2016 until mid-way thru 2017. So, there were times even at night when the lights in a restaurant would hurt me or walking into a grocery store would hurt my eyes.   I’ve been asked all kinds of snarky questions.  Had comments that are beyond rude. “Can you “86” your sunglasses” … “ hey Hollywood” … “oh I guess you think your light Is so bright” but I have had the resolve to work thru this.  People can just be mean.  I had to continue to hope that I will heal.  And being thankful for my left eye. I could have easily had gotten these amoebas in both eyes.. which would mean I would be blind right now, so as bad as this all sounds, I feel fortunate and blessed to not be feeling the pain that I endured for such a long time and to have my sight (although I am severely nearsighted in my left eye) … I can at least see out of it!  For that I feel very lucky!  I am hoping that one day I will also be able to say this about my right eye.

In a few days I go in for my corneal transplant.  I will look normal again, which will be nice not to have the stares, rude comments, etc.. But the functionality is unknown.  Being the eternal optimist I think I will see again… But I am preparing for the worse and hoping for the best.  But this is where I am pleading for your prayers.  I want to see again.  It has been a hard transition.  If you have both your eyes, please don’t ever take them for granted. They are a blessing, My left eye is a blessing.  I can function pretty normally with it alone..but I really want to see with both eyes again.  So, pray for me.  Please pray and pray.. I believe in prayer and I believe everything happens for a reason. So, I will accept whatever the outcome is.  But for all of you who wear contacts or have children who wear contacts, please be aware of coming into contact with tap or fresh water.

And to those loving, sweet friends and family, especially my daughter and my fiancé, who have gone with me to appointments, texted, called me, brought me dinners, checked on

me, picked up my many medications. You have been a huge support system during this time.   I am forever grateful for all of you in my life. It has been an ordeal that I have tried to make the best of, but as it comes to the end, I am of course anxious and praying for the best outcome possible.

 So please…..keep me in your prayers!

Written by Amy Jane