What I want you to know about having a parasite in my eye

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Kellie.

In 2007 I was diagnosed with a parasitic infection in my eye. It was horribly painful, both the infection and the treatment. The parasite was chomping away on my cornea, eating it and any other microbes that were present. Treatment consisted of 7 different eye drops, administered each hour, with 5 minutes between each drop. I had to do this 24 hours a day. So, to be clear, this means that at the start of each hour, I placed the first drop in. Then, at 5 past, I did the second. At 10 past, the third. And so on, until it was 35 past the hour. Then I had 25 minutes to sleep. And then I started over again. All. Day. Long. One drop was baquacil which may sound familiar to anyone who owns a pool as it is sold as a pool cleaner in some areas. Another drop was the equivalent of an industrial toilet cleaner. I would do these two first to get them over with.

I also had to drive two hours away to go to Boston for checkups every day for the first two weeks. My husband would pack us a lunch in one cooler and my drops in another, and we would head off to spend the day there. Thankfully, my mother was able to move in with us and be there to care for our 3 kids. We were double thankful that my husband worked at a company that allowed each employee to donate 1 or 2 sick days to him to use during this time.

I finally had to be admitted to the ICU and remained there for a month that summer. The parasite could not be stopped and the decision was made to do a corneal transplant to determine if the parasite had gotten into my eyeball. Thankfully, the pathology department determined that the parasite had remained contained in my cornea and my life wasn't threatened (the parasite once in the eye ball works its way through the optic nerve to the brain, at which point it is terminal).

I did know at this point that my cornea would fail as I wasn't permitted at this point to use steroids to prevent rejection. The cornea held on for a while, but I did develop a cataract that would have to be removed at the same time as I had my second corneal transplant in the spring.

Like all mommies, I made it through most of the winter avoiding all the colds and viruses my kids brought home from school. Unfortunately, I couldn't avoid them all and the one I did catch, was a doozy. Lots of vomiting in the house that week. One night while I was getting sick, I felt an awful pain in my bad eye. It went away after I finished and got comfortable on the couch. But when I woke up the next morning, I looked like I had had a stroke. That side of my face, around my eye was just hanging. We rushed to Boston, sick kids, tons of plastic bags for anyone still puking, and lots of saltines in tow. It was determined I had "blown" my eye, fragile at this point due to the toxicity of the drops, the injections I had and the surgery. The good news was, I had nothing to lose at this point and we could give it some time to see if it could re-inflate. And it did. Too much.

It was determined that when I had vomited not only did I damage the back of the eye, which sealed itself, I also damaged the drainage system and as a result developed glaucoma. Severe glaucoma. Normal numbers are 10 to 21. Mine were regularly in the 30 to 40 range and one emergency visit I was up to the high 60's, even with drug intervention.

Long story short, it wasn't until I had my second corneal surgery that it was determined that the glaucoma had destroyed most of my optic nerve. The cataract had not allowed them to test my vision or to see the damage being done. I had two additional surgeries to slow down the intraoccular fluid being produced and a tube to drain the excess away as the pressure was causing extreme pain.

The time frame of all of the above was 4 years. Finally, just last summer, I met with an ocular plastic surgeon to discuss making some repairs to the area around my eye as it has sustained a lot of cutting and wasn't matching my other eye. After I explained what I was hoping to discuss, he looked at me and said "Why? You are in pain every single day, why are you keeping the eye?" And I couldn't answer him. And just like that, I felt a huge weight lifted off my shoulders. And I cried like a baby. I hadn't had a chance to cry for myself before that. I had two kids, a husband and a host of other family that I had needed to stay strong for through it all. And the doctor sat there and let me cry. And then we scheduled to have my eye removed.

Since, I've had the eye removed and a fantastic prosthesis made. I wake up every day without pain in the eye and I go to bed not having to worry if I am going to wake up in a little or a lot of pain. My biggest issue now is losing the last third of the weight that I put on following the second corneal transplant when I was put on high doses of steroids.

What do I want people to know? I want them to know that everything I went through was because I wore contact lenses and had never, ever been told that I was at a higher risk of parasitic/fungal/bacterial infection of my cornea. I was never told to never, ever let water come in contact with my lenses. That I shouldn't shower with them, swim with them, and that even drops of water left behind in my case could be life threatening.

I also want people to know that if you aren't sure what to say, just say "I'm sorry you are going through this." Don't tell someone that they are lucky they don't have cancer, or that at least it isn't an arm or leg that they are losing. Don't tell them that "at least you have another one." I'm aware that things could have been worse, but that doesn't mean that I consider myself lucky.

Don't make empty offers to someone who is sick. Don't ask "what can I do?" or tell the sick person to call if they need anything. They will never call, even if they need something. The biggest help was the people who just did things. The dojo where my son and husband take martial arts created a calendar and each family from the dojo signed up for a night and cooked us dinner every night for 2 months. It was delivered each day so that we didn't have to find room in the freezer for a bunch of meals. When some people from the dojo discovered that our stove wasn't working and we had to use the broiler to heat everything up, they found us a used stove and showed up at our house with it. They moved it in and took away the old one. The men who showed up knew my husband was embarrassed, (we were in $35,000 of medical debt and buying a stove wasn't possible) and they shook his hand and said, "we've each been there before, and someone helped us."

Co-workers donated vacation and sick days to my husband, without him needing to ask HDR for an extension. When the company was sold, the owners made one of the contingencies be that my husband got to keep all the accumulated days.

People who were acquaintances at the time, became good friends and the ones who could be counted on. When I had my final surgery, friends sent gift cards to local restaurants and pizza places so that I wouldn't have to cook. My son's kindergarten teacher showed up at the door with a meal. Another mother waited until my parents went home and then showed up with food for that first night I was on my own. The mother of my daughter's best friend delivered a care package to me and it was filled with items that I could use when I could do nothing but sit and watch tv during my recovery - small snacks, some healthy, some indulgent, hot chocolate, lotion for my dry skin and a small bell to ring, instead of yelling (which could cause strain) if I needed someone.

I had a lot of people offer to help and I think they really meant it. If I had called them and asked them to do something, they would have. But it put the onus on me. When people are ill or hurt, they already feel vulnerable, and the last thing they will do is make themselves more so by asking for help.

This was a learning curve for me. I too was guilty of the empty offer of help. Now, I know better. After a friend was injured, instead of an empty offer, I called and told her I would ensure her children got home from school safely the week after her surgery. I would have offered to cook, but I am aware of my own limitations - in terms of not only skill, but also time.

My advice is, when offering to help someone who is sick or hurt, make sure to be specific. Be clear what you will do and how long you can do it for. Understand what you are capable of doing. Many people offer to provide a meal, but that can be expensive to do and time consuming. Make sure you have the time and the money. Also, and this is a big one, deliver the food in throw away containers. When people are sick, or caring for a sick person, the last thing they need to worry about is properly cleaning your dishware and returning it in a timely manner. I actually had one person call my house everyday for 4 days asking if we still had their cookie sheet. I was in the hospital at this time due to a complication and the cookie sheet was the last thing on our minds.

If you don't have the time, money or energy to dedicate towards doing something for someone who is sick or injured, you would be amazed what a card will do to lift the spirits. To know that someone took a moment to think enough of you to buy a card, sign it and send it, can have such a positive affect. No need to worry about what to write inside, a simple "thinking of you", "sending positive thoughts/prayers" can bring such comfort to another person.

If anyone is interested in learning more about my journey, I have included the entire story on my blog. In addition, after being asked many times by friends, family and acquaintances what I look like without my prosthesis, I blogged about that as well. I am part of an online support group and included photos of myself without my eye as well as photos of my prosthesis and the process of putting it in my socket. Many people put up with a painful eye as they fear what they will look like with the eye removed, or that the prosthesis won't match. I wanted to show people that it isn't as bad as they think. That post alone had hundreds of visitors - some I am sure out of curiosity, but I would like to think most were people who were seeking help in order to make a decision that is best for them.

Thank you for allowing me to share my story. If you wear contacts, or know someone who does, I encourage you to educate yourself on the proper care for them.