Ever since late 2006 I had been experiencing a seemingly never-ending onslaught of pain and depression from continual keratitis attacks. Where once my eye would flare up and then settle down after treatment, nothing seemed to work and the pain periods were daily. I spent hours at work with a patch on my eye and it was a joke to some of my workmates that they had a pirate in the office. Someone suggested buying a cockatoo to sit on my shoulder. I grimaced at their jokes and tried to take them in my stride; after all no-one knows your pain or distress unless they have felt it and they can’t be blamed for being insensitive.
The keratitis problems escalated when I started using different drops for glaucoma. I had been using lumigan drops with seemingly no ill effects. But the day came when the pressure escalated and lumigan were thrown out and replaced by xalacom. Xalacom drops are two drops in one and did bring the pressure down. However every night when I had to use the drops I cowered in front of the mirror, dreading having to drop the liquid into my eyes, and most especially, my left eye. The stinging was intense and then often, pain in my left eye; a throbbing pain. The drops in the eye process were the last thing I did at night before I headed for my bed and the comfort of closing my eyes until the pain subsided.
It seemed to me that these drops were somehow not right for me and I was sure they were making the keratitis so much worse, so bad that the eye wouldn’t heal and was always raw and sore. I used a lot of patches in about 8 months and a lot of ointment and sticky-tape. I was at the end of my rope wanting just to rip my eye out of its socket and throw it away. After all there isn’t much sight left there so why should I have to suffer all that pain with no gain?
I told my eye specialist, who by the way charges 3 times what Medicare considers is the cost of a visit or a treatment, that I thought there was a problem with the drops. I was told quite firmly that no matter how painful they were to use I had no alternative if I didn’t want to lose all my sight. One week during this year I spent almost my pay for the week at the eye specialist’s and for little return from Medicare. My private health cover doesn’t compensate me for eye specialist treatment unless it is at a hospital.
There had to be someone somewhere that would listen to me and perhaps offer me alternative treatment and the only place I could think to go was to Sydney Eye Hospital. After contacting my eye specialist and asking for a referral to the Hospital and giving permission for release of my medical history, I settled back and waited to hear about an appointment. I couldn’t choose a doctor I just had to go to the Glaucoma Clinic and be seen by a doctor who specialised in the complaint. I couldn’t imagine that anything could be worse than what I was going through so I actually looked forward to the trek into the city for an appointment.
The appointment letter finally arrived and I had another few weeks to wait. During those weeks I suffered constantly from keratitis, right up until the night before the appointment. I went to the hospital with a weary sore eye and a worn out depressed state of mind.
I sat down in the waiting area after registering the fact that I had arrived and a while later was called in for an eye test. Now this woman was a doozey and had an attitude that I wasn’t in the mood for. I almost told her off but considered my options and decided to just let her go; after all she spends her life with the elderly and people from other cultures and has developed a style where she talks down to everyone and likes to lay the law down. I did answer back a couple of times in my own defence and I think that she put my card down the bottom of the pile because it was a long wait to see the doctor and some of the people that arrived after me were seen before me and had gone home.
I finally went in to see the doctor and was fortunate enough to see the head glaucoma doctor on duty first. He questioned me about what medication I used and I told him about the drops and my keratitis problem. He doused me with a couple of drops in each eye and then sat opposite me staring into the dratted machine that shone that woeful light into my eyes. One of the other doctors wandered in and he rose from his seat and asked the other doctor to sit down and take a look at my eyes. He told the doctor that she was looking at the result of an adverse reaction to the preservatives in xalacom and that my eyes showed a typical yellow colouring caused by that preservative.
I felt a sense of relief then because I knew that I had been right and I kicked myself for not seeking help sooner. The doctor drew up a course of action and tests for me and number one on the agenda was taking me off all drops that have preservative in them. So out the door went xalacom. Once he had finished with his list of ‘to do’ tests etc for me he handed me over to the female doctor. I had to go and sit outside again then and wait for my turn to see that doctor.
Eventually I did make it into her room and more checks, more drops. Then she took me to the laser room and performed laser treatment on one quadrant of my good eye to try and lower the pressure that way. At last, someone was doing something other than telling me that all I could do was use drops that were causing me distress and pain.
I spent 4 hours in the hospital that day waiting around mostly to see the doctors and to have the laser treatment done. I then had to go to the pharmacy and wait around for the new drops that I have to use until the ones I am supposed to use arrive. Unfortunately they are drops that you can’t get on prescription without approval from Canberra and it’s now 3 weeks and I still don’t have them. I had left home that morning at 7.30 and arrived back home after 4.00. A long day and one where I drank a cup of coffee and ate a muffin in the train so there was no time spent enjoying a break during the day in a coffee shop or restaurant.
I had to return to the hospital again last week for another series of tests and a check of the pressure that had only come down from 23 to 21 .. still a way to go to reach 15 maximum that I’m allowed. I don’t have a clue what the 3 tests were for, as I didn’t get to see the doctor again after the tests. I am supposed to return again next week if the drops have arrived or else return the week after when I will have run out of the drops I am now using. It’s Government red tape as per the norm and a nuisance as I live so far from the city and have to take sick leave from work, but I’m bound and determined to stick with this now that I have started it.
I am pleased that I have only had a mildly sore eye on a couple of occasions since my first visit to the Eye Hospital; a marked difference to pain every day of my life before then. Another bonus is the visits to the hospital cost me zero as Medicare and my private health insurance pay all costs except for the pharmacy. So a trip to the hospital costs me $12.50 for the return train fare and the petrol to drive to the station from home. Each visit to my eye specialist ranged from $92 for just seeing him to $250 for a field test so my pocket isn’t hurting anymore either.
The doctor I saw first mentioned that if the treatment/drops do not do the trick I might need surgery. My eye specialist never mentioned surgery at any time nor did he apparently see the results of the xalacom drops in my eyes that they saw at the hospital. One wonders about these ‘so called’ eye specialists that are conducting business and making probably zillions out of patients like me that accept what they say as gospel.
So my advice to anyone experiencing problems with their eyes is to go to the largest Eye Hospital in the nearest city and see the professionals. There isn’t any cure for glaucoma but if I can keep the sight I have left and not be in constant pain and depression then that’s all I could ask for.
Until next time.
Vena
22 July 2007
I've now had three visits to the Glaucoma Clinic at Sydney Eye Hospital and have started on the new drops that I had to wait for release by the Federal Govt. They cost me $24.60 for a month buying them at the Hospital Pharmacy and it appears that is the only place I am allowed purchase them. If they weren't available through the Govt they would no doubt be extremely expensive.
The drops are Timpotol and they do not have preservatives. I still have to use the Pilocarpine drops (no preservatives) 4 times a day and the Timpotol twice. Both drops have to be kept in the fridge which is a bit limiting if you are out and about for a day and both are in tiny bottles that you have to dispose of after 24 hours. I found it very hard to work out how to get the drops out of those little bottles as they are hard plastic and quite small. However I have worked out how to hold them between my thumb and index finger to get the maximum squeeze pressure.
I spoke to another patient last visit and she has the same problem as I do and she also has bad arthritis in her hands. She uses small pliars to hold the bottles with and squeeze the drops out. Really, these people that produce these drops don't think about the fact that those trying to use them could have handicaps like arthritis and also, we are all suffering from loss of sight, and that makes it hard to use them too.
I have another appointment for the second week in August to see what the pressure is doing. Last visit it hadn't come down much and had gone up in my bad eye. My options are limited because I can't use drops with preservatives, so next visit may result in laser on my bad eye, again in an attempt to lower the pressure.
I am feeling so much better though because I no longer have the pain of keratitis every day of my life. Now and then I will have a day when I do have some pain and discomfort but it's nothing like before and is bearable. I've been told at the hospital that I have advanced Glaucoma and the prognosis really depends on how I fair with the drops. There is no good news really just a little bit of hope and where there is hope there is a chance it might all be okay.
I can actually sit at the computer now and read without my glasses which is a marked improvement as before the letters were all jumbled together and I couldn't work out what most words were. This is wonderful as it shows that there has been improvement. I also feel that my eyes are focussing much better and I guess that's why I can read without glasses.
Vena
