first post timeline

I don't know why it was so hard for me to write about this. It's not as if I haven't always posted on Facebook before when I've had a minor cold or sniffle in an attempt to get well wishes. But because this is serious, I've been too afraid to let anyone but my closest family members know.

Two weeks ago, a doctor told me that I have acanthamoeba keratitis in my right eye. This is a rare disease, although associated frequently with contact lens use. Basically, by exposing your contact lenses to regular water, be it from the shower head to the ocean or a lake, anything living in the water can slip in and attach itself to your eye. This is especially true for things you aren't likely to notice, such as amoebas. If you add bad practices such as not cleaning you contacts well enough, then the amoeba can grow and make your eye its new home.

Since coming to China, I have been pretty guilty of not cleaning my contacts enough. I was running out of my stock of contacts as well as the particular cleaning solution I liked (Aosept), so I was trying to stretch out their wear a bit. I was supposed to dispose of them after a month, but I would usually extend it to two months, particularly because I didn't wear them everyday. Then, when I was storing them for the night, instead of dumping out the previously used solution, I would just top it off with some new liquid, thinking that would clean it "enough."

It's not easy to write about this because in retrospective it seems so obvious that only bad things could have come of it. I have been wearing contacts for 12 years, and have never had any eye problems before. Perhaps when I first got them, my doctor told me not to wear them while bathing, swimming, etc. but I certainly hadn't remembered it. Mainly I want to detail these bad practices for any friends I have who may be doing the same things as a warning.

There are many types of eye keratitis, such as bacterial, fungal, viral, and herpetic. Unfortunately, acanthemoeba is the worst of them because it can be difficult to diagnose and treat. And for all types of keratitis, there is the possibility of eventual blindness.

Here is a timeline for events for how the infection developed:

July 29th, 2013
I woke up with a pink, watery right eye which is sensitive to bright light. Of course, I thought it was pink eye. The night before at dinner I had had some discomfort with it, so it wasn't that big of a surprise. According to the information I found on the internet, I believed it to be viral pink eye for which it said there was no medicine you can take, but symptoms should take care of themselves in a few days. Dave and his boss convinced me to go to a free clinic doctor just in case, but the doctor there also thought it was pink eye and gave me some eye drops.

August 1st, 2013
Dave is worried because I have done nothing but sleep constantly for the past 3 days. None of the symptoms have alleviated, so his boss recommends we go to her ophthalmologist friend at the regular hospital.We go, and he looks at my eye with a slit lamp. According to the medicine he prescribed me (I had to look it up later because it's always in Chinese), he thought I had viral keratitis (although this wasn't explained to me). For this, he gave me cortico steroid eye drops, ganciclover eye gel, and another eye drop which I have not been able to look up. He asks me to check back with him after 4 days to see how I'm doing. The medicine starts working immediately and by the time 4 days have rolled around, I feel there's no need to see him (I'm a child of a nurse and an American, I've been brought up to think that you don't need to go to the doctor unless you're about to die).

August 19th, 2013
From the beginning of the month until now, my eye was almost totally clear again. The only time I saw redness was after I woke up and obviously hadn't taken my meds during the night. As soon as I put the medication in, my eye would clear again and I felt pretty much back to normal. On the 11th, because it was my husband's and my 6th month anniversary, I put on some make-up before going out to dinner with him (I did not trust putting in my contacts though, even new ones). Nothing had happened the day after, so I took this as a sign that I really was all better and somehow that my make-up had not been contaminated. I tried putting on make up again, using slightly different ones, and soon after had to wash it off because of the irritation. The next morning, my eye was red and watery again, as well as a little grayish over my pupil and iris. When I cover my left eye with my hand, it becomes apparent that the vision in my right eye is very blurry. I was kicking myself, but felt confident that it would  go away again. I continued with the previous medication.

August 22nd, 2013
We went to see an ophthalmologist again because the medicine wasn't working anymore. He said to continue with the previous medicine and also added Aciclover pills to my regimen. This also is medicine that is prescribed for viral keratitis.

August 26th, 2013
The pills aren't having any effect and we are getting fed up with the doctors from that hospital. We try getting a reservation at a very large hospital in Guangzhou, but there are so many people there. Essentially, Dave's boss, who is very good at getting her way when she needs to, insisted that I needed to see an opthalmologist right away and that the pain is so terrible, so we are finally allowed in. The doctor we see actually has really good English because he has studied in America and he is the first to ask me in depth questions about how long this has been going on, what my symptoms were, and especially about my contact lens use. He is the first to tell me that he thinks I have acathamoeba keratitis, but they do not have the tests they need to make sure, nor the medication for it. He suggests I go to Hong Kong.

August 28th, 2013
After doing some tests to make sure I don't have the other kinds of keratitis (viral, fungal, bacterial, herpetic), we finally go to Hong Kong to the recommended eye hospital there. In the past 4 days, my eye has gotten worse and worse. It has gone from the typical "pink" you see with pink eye to a complete blood red. My eyelid is very swollen so it's hard to keep open. Over my iris and pupil is a distinct gray ring, and the vision in that eye is so blurry, I can't count the fingers on a hand held up in front of me. It's all very painful and I notice shooting pain in my forehead and below my eye. We see the doctor and he also highly suspects it is acanthamoeba. When we had asked the previous doctor, he described the condition as not so serious and we were very relieved. But this doctor told us that it was in fact very dangerous and that the worst case scenario was that I could lose all vision in that eye. This was fairly shocking to Dave and I, although I had read up on keratitis and knew that it was a possibility. He told us that treatment will take up to 3-6 months just to get rid of the infection, and then much longer than that to restore vision. If the treatment doesn't work, I will need to go to America for a cornea transplant. He took some scrapings of my cornea with a scalpel to officially test for acanthamoeba, but said that he would put us on the medicine for it right away. Since the medicine is toxic, it was a bit of a risky move, but he felt very strongly that it was acanthamoeba, and more importantly, that I couldn't wait the amount of time for it to be tested. The medicine is polyhexamethylene biguanide and Brolene eye drops, both of which need to be administered every hour, even through out the night. The Brolene in particular is very painful and I often feel queasy after taking them. Most patients can stay at the hospital for this and have a nurse take care of it, but it was far too expensive for us. We have to take care of it ourselves, which means neither of us gets much sleep.
September 7th, 2013 We were hoping to decrease the amount of medicine after a week of treatment, but, although the doctor saw slight improvement, he felt we should continue at its current pace for another week. Dave has been able to take time off of work for this to help me, but of course, he's going to have to return some time. Generally my symptoms have gotten better. The swelling in my eyelid has gone down a lot, so that sometimes I can almost open it all the way. Sensitivity to light has decreased a lot. The doctor says that the gray ring in my eye is getting smaller and I feel that I can see a bit more of my regular eye color again. Pain has been off and on with sometimes no pain at all and at other times excruciating. Especially this week, I've had to take pain killers at the maximum recommended amount. The redness is down a little too. Unfortunately, my vision has not improved. One of the most frustrating aspects of this is that sleep, even with me continuing to take my medicine through out it, never seems to improve the condition. I am so used to sleeping a lot when sick to help heal the body faster, but when ever I am actually able to sleep for longer than 4 hours, my eye is all red again and sore and puffy. My body and mind will feel better, no doubt, but my eye will feel worse. Although I have full confidence in the Hong Kong doctor I am seeing, it is not an ideal situation. Just going to Hong Kong takes at least 3 hours and we don't have many options for going outside of 8AM-6:30 PM. We have no insurance so medicine and doctor's visits are at their costliest, not to mention paying for transportation and hotels when we stay there. We try to keep costs at a minimum by only going once a week, but I would so much rather have a doctor checking my eye every few days. Considering this will likely need to go on for at least several months, it will really be hard on us, if not impossible. Luckily, my grandfather has been a part of the Lion's Club for several decades, and they sponsor those with serious eye problems who have no insurance and low income. I am hoping very much to be accepted into their program so that I can return to America and hopefully get the best care possible. We would be so thankful if you could include us in your prayers and thoughts at this time.