Travel horror story: how a rare eye infection put a halt to our travels

You may be wondering why I haven’t posted on here for a while. If you’ve read my first post, you will know how excited I was for this trip. Unfortunately, a stream of unforeseen bad luck has meant that, for the past couple of months, it hasn’t been quite the “new and amazing, dream-come-true chapter of my life” I had been envisaging. It all started a month and a half ago; on the day we made our escape from Coober Pedy.

How it started

That morning, I felt the small irritation of having something in my eye. I ignored it, thinking that it was nothing; maybe my eye was just a bit dry and it would eventually go away on its own. The feeling gradually got worse over the course of the week, becoming more and more uncomfortable until I stopped wearing my contact lenses, thinking that my eye just needed a break. A few days later, my eye was extremely red and irritated as well as being so light sensitive that I could barely keep my eyes open during the day, even if it was cloudy. Not having prescription sunglasses, I took to wearing my regular sunglasses over the top of my glasses wherever we went, which was a very cool look!

A week and a half later

Not being able to keep my eyes open during the day meant that I was too uncomfortable to venture outside the campervan much and couldn’t appreciate any of the sights when I did. It was already starting to have a serious negative impact on our trip. Realising that it wasn’t going to get better on its own, we found a Specsavers in Sydney and got seen by an optometrist. Their initial thought was that I might have a cold sore in my eye, but as I do not suffer from cold sores normally, she rejected this idea. She prescribed me lubricating eye drops as well as steroid drops and told me to come back in a week if it didn’t get any better.

A week later

A week later, there had been no improvement to my eye; so I went to another Specsavers on the Gold Coast. The optometrist there took one look at my eye and simply said “woah” in a shocked tone (not what you want to hear!) and made a call for me to be seen by an eye specialist straight away.

We made the drive to the other end of the Gold Coast where I was seen by a specialist. He said that my eye was too inflamed, as a result of the steroid drops I had been taking, to accurately diagnose me. He wanted me to go away for a week using only the lubricating drops and come back.

During the course of that week, my eye deteriorated rapidly. All of the symptoms I already had got a lot worse (to the point where we couldn’t even have the lights on in the van at night time) and my vision started to get very blurry until I couldn’t see out of my left eye at all. I would wake up with my eye swollen and stuck together each morning and crying from the pain. Things got very difficult and we were struggling to make the most out of the trip.

A week later

When we finally went back to see the eye specialist a week later, he told me that my eye was even more inflamed than the last time he saw me and that, if anything, the steroid drops had probably actually been helping to keep the inflammation down. Great.

Like the first woman I saw at Specsavers, the specialist thought that the problem could be a cold sore in my eye. He took a swab test; prescribed me the appropriate medicines to get started on right away and asked me to come back in a couple of days (which was my birthday) for the results.

During the course of taking these new medicines (one of which was a cream-like ointment that made my eye a gloopy mess!), my eye started to feel better and I was filled with hope that we were finally getting somewhere with it. I found myself praying that I could have an eye cold sore for my birthday, so that at least we’d know what it was and how to treat it. Unfortunately, it was not to be. (I got tickets to see Taylor Swift instead, which I guess is the next best thing to eye herpes.)

Two days later (my birthday!)

On the morning of my 24^th birthday, we drove down to Coolangatta to see my eye specialist, who informed me that the test for the cold sore virus had come back negative. However, because my eye seemed to be looking better on the medication, he advised me to complete the full two-week course to see how I got on – just in case the test had come back inaccurately. If my eye wasn’t better when he saw me again in two weeks, he would need to perform a biopsy as we could be looking at something “much rarer and more serious”. Again, not what you want to hear. He stressed that if my eye got any worse in the meantime, I shouldn’t wait until my appointment but seek emergency attention right away.

The following day, we started our journey back down to Tasmania in order to return the campervan.

A week later

After arriving in Melbourne, we found out that it would be more difficult than expected to get a ferry back to Tasmania. We had to join a wait list and accept that we wouldn’t make it back to the Gold Coast in time for my appointment. When I called my specialist to cancel and ask for a referral, he took the phone from his secretary and told me that I should go to the Royal Victorian Eye and Ear Hospital.

We went through the emergency department where I was passed immediately from a doctor to his senior to a corneal specialist. Having the same fears as the eye specialist I had been seeing on the Gold Coast, they decided to perform a biopsy on my eye, which was not a pleasant experience at all. It involved my eye being held open by a metal contraption, anaesthestised, scraped repeatedly with a razor and jabbed with cotton buds. 

The doctors informed me that their biggest concern was that I would have a very rare but serious eye infection called Acanthamoeba Keratitis. 

Acanthamoeba Keratitis is a waterborne infection that most commonly affects contact lens wearers, where a parasite gets into your eye, leading to severe pain and even blindness. Because it is so rare, it is incredibly difficult to both diagnose and treat and can lead to severe complications. I won’t go into the horrific details of the illness here, but feel free to Google it for more information if you are interested. (Something I have spent entirely too much time doing.) 

I was taken off the steroid drops, put on different ones and told to come back the following day for more tests.

The next day

The next day, we went back to the hospital where I underwent an imaging test that involved a large camera having to make direct contact with and move around my eye whilst someone held it open with cotton buds. Again, this is not up there as being one of the most enjoyable experiences of my life.

Later that day, we returned to the hospital for the results. They hadn’t come back yet and we were told to come back again in three days.

Three days later

When we returned to the hospital three days later, we were seen by a whole team of corneal specialists, who were growing more concerned about the risk of Acanthamoeba Keratitis. 

Since I had been taken off the steroid drops four days earlier, my eye had deteriorated to the worst state it had been in since this started. The doctors explained that this indicated the steroids had merely been masking the problem rather than helping it, and therefore were having more of a negative impact on my eye than a positive one. 

The test results for everything sent off had come back negative, but because Acanthamoeba Keratitis is so difficult to diagnose, and because I had been treated for everything else already with no effect, they were becoming more convinced that this was the issue and wanted to complete another biopsy to try again for a positive result. I also had the imaging test completed again. 

The team had a big discussion about whether or not to start me on the medication for Acanthamoeba Keratitis before the test results even came back. Because it is so difficult to cure, the earlier you get started on the treatment, the more chance you have of beating it. However, because it is so hard to kill the parasite, the eye drops used have to both be extremely toxic and used every hour from anywhere between three months to upwards of a year. The drops are so toxic that they themselves can cause you separate eye problems by destroying the outer layer of your cornea and creating things like corneal ulcers. Because of this, the decision was made not to start me on the treatment until they were absolutely positive that it was necessary. We were told to come back again in two days. I had a panic attack on the way home.

Two days later

The test results hadn’t yet come back when we returned two days later. However, two of the corneal specialists took a look at my eye and thought there were some indications that it could be a viral infection. Everyone in the room was hopeful that this would be the case. They prescribed me tablets that would give me a stronger dose of the antiviral medicine as well as two new eye drops and asked me to come back in three days to see how I was getting on.

By this point, we had been spending so much time at the hospital that the staff had started knowing us by name. They said hi to us when they passed us in the hall and goodbye when they left for the evening. It was like our second home! 

I left the hospital that evening full of hope and elated at the idea that this could all soon be over if the most recent diagnosis proved to be correct. I felt silly for all of the panicking, worrying and obsessive Googling I had been doing the night before and convinced myself that the viral tablets would be the answer we had been looking for all this time.

The next morning

The next morning, less than 12 hours after we had left the hospital, my hopefulness was cut short. I received a call from one of the doctors, who informed me that my test results had come back positive for Acanthamoeba Keratitis. He told me that I needed to get back to the hospital as soon as possible to collect my new medicine and discuss my treatment plan. I thanked him, hung up the phone and cried.

We were due to be boarding the ferry back to Tasmania later that day, so we drove the campervan to the hospital on the way to Port Melbourne. After we parked the van in Melbourne city centre, we stepped out, locked the doors and Nick immediately started to panic. For the first time since we had been borrowing the campervan, on our second to last day with it; on our way to return it to Tasmania, we had accidentally locked the keys in the van! It was so typical of the luck we had been having for this trip that we almost felt like laughing. A few minutes later, I received another call from a different doctor at the hospital asking if I would be there soon. I had to go off to the hospital by myself whilst Nick ended up waiting two hours for a locksmith to show up and let him back into the van. Oh, calamity. 

At the hospital, I was rushed straight through to see two of the doctors I had become familiar with as well as three who I hadn’t met before. My diagnosis and treatment plan were explained to me (I have to put two different drops in my eye every hour, even throughout the night) and my eye was looked at again. I was told that the drops were likely to make my eye very painful and sore and that I should expect it to get worse before it got better.

One of the doctors told me it was likely that this disease had been lying dormant in my system before I even left England, as it is much more common there due to the way our water system works. He informed me that I would be in this for the long haul; that the treatment would likely take upwards of a year. I held back tears as we discussed whether or not it would be a good idea for us to return home to England. 

When we were left alone, a doctor who I had been seeing regularly apologised for the unfortunate outcome of my diagnosis but pointed out that at least we now knew what it was and therefore had the best chance of treating it. He told me that although it is a rare infection, it has been on the rise recently. On average, for the past few years the hospital has seen two cases of it a year. However, this year, they have seen eight. We arranged to meet again in two days when I had returned from Tasmania. I collected my new medication from the pharmacy and walked back to meet Nick, holding back tears once more.

Now

I have been on the drops for a week today. Although, as I was forewarned, they are very painful to put in (it feels like voluntarily dropping acid into my eye twice an hour!) and my eye is very sore and painful, I have been reliably informed by three doctors on both of my visits back to the hospital since then that my eye is looking a lot better already. I don’t have to go back to the hospital again for another week, which is the longest I have gone between appointments since this whole thing began! It took six weeks to get my diagnosis, which I am told is actually a very fast diagnosis for this illness. I am so grateful for all of the amazing support that I have received and continue to receive from all of the doctors at the hospital, who have all been absolutely amazing. 

There’s one thing I know for sure, and it’s this: I never would have been able to get through this as far as I have, if it wasn’t for the fact that I have the most amazing, supportive and endlessly patient partner in the world. A partner who cleaned my eye with boiling water and cotton pads when I woke up with it stuck together; who held me when I woke up crying with pain and frustration; who read my book to me when my eye was too blurry to see; woke up uncomplainingly in the middle of the night to put ointment in my eye for the fifth time that day; drove me across Australia to see eye specialists; came with me to all of my endless hospital appointments and held my hand for hours in the waiting rooms. Not once blaming me or getting annoyed, even when we had to fork out money from our travel budget to spend on expensive medicines that we would only throw away again the next day when a different diagnosis was suspected, or when we had to spend days at a time cooped up in caravan parks playing cards instead of exploring the country that we have travelled so far to be in. I am endlessly grateful to have such an incredible person by my side and will never forget how lucky I am.

We have decided to settle in Melbourne for the time being so as we can be near the hospital. The plan is to stay here until I have either made a complete recovery or, if recovery ends up taking longer than hoped for, at least until the treatment has stabilised. I am hopeful that the combination of my relatively early diagnosis and excellent care will lead to a quick and speedy recovery so as we can finally resume our travels! Until then, we are happy to spend a few months living here. Melbourne is a beautiful place that has regularly been voted the world’s most livable city. We have rented a beautiful apartment that has a rooftop infinity pool, Jacuzzi, steam room and gym and we move in on Sunday! So, there are definitely positives to take from this!

It feels strange to reduce all of those weeks of pain and fear and frustration into a simple, summarising blog post. However, I created this blog in order to record all of the details of our trip, and as this has turned out to be such a defining event, it felt disingenuous not to include it. It couldn’t have come at a worse time, but that’s just life and you can’t plan for these things. You just have to learn to roll with the punches and to make the most out of bad situations. My contact lens wearing days are certainly over, but that’s fine, because glasses are so in right now! … Right?