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Dancing with the Music: a Keratoconus Journey

I have been living with keratoconus for nearly twenty years. Having distorted vision makes you feel so sad at times. To overcome this situation, you must be extremely positive at all times.

Dancing with the music: a keratoconus journey

Diagnose me please

I was diagnosed with Keratoconus at the age of nineteen. Honestly, I never ever had problems with my vision before. Funnily enough, I used to highlight my vision as one of my strengths. One fine day, I woke up and realized that I was not seeing properly.
My vision was blurred and my eyes were getting watery. So I called for an eye appointment, thinking that I would be prescribed with a pair of glasses, to which I was not looking forward to. And my first of the many visits to opticians arrived. I was immediately told that I needed glasses and was actually yelled at by the optician why I never wore glasses before. And my first diagnosis was given.

I was told that I had lazy eyes and that my vision was so bad. When I went to order my first pair of glasses, the person behind the counter asked me for any previous prescription, to which I told her that this was actually my first pair. Anyways, some two weeks later, I went to collect my glasses. When I placed them on my eyes, I just couldn’t see. My colleagues and my family told me that I have to give it time till I get used to it, but in reality I was better off without them. I decided to book another appointment with a different optician/ophthalmologist. To my amazement, this one told me not to worry since I only have an eye irritation to which he prescribed me some eye drops. The drops were used but my vision was still distorted.

To cut the long story short, after going to different ophthalmologists, I was finally diagnosed with Keratoconus. This ‘kera’ thing means that the eye cornea deteriorates by time and its layers are thinned. There are different stages of this disease – from mild to severe. My left eye was diagnosed with severe keratoconus and the right with mild. I still recall how much I laughed when I heard the name of the condition. But soon after, I discovered that it was indeed serious. Well, laughing is a coping mechanism after all, isn’t it?

The cure (part 1 of...)

I was referred to a cornea specialist, who initially tried fitting me with special lenses to restore my vision in the left eye. For persons who have keratoconus, glasses do not help at all, since glasses correct your lens but not the shape. Corneas are normally round, sort of dome-shaped, but in people who have keratoconus, the cornea takes a form of a cone shape, with the middle of the eye protruding outwards.

So, lenses are normally fitted to get the shape of the cornea round as can be for focus. But being that my cornea was very steep due to the severity of the disease, I was informed that the only way out to restore my vision and to stop the progression of the disease was to have a corneal transplant. I was placed on a waiting list for a donation of organs from deceased persons. And in April 2000, I did my cornea transplant. Being twenty at that time with a severe case in my eye helped in making my waiting not so long. In fact, it was only three months after I was placed on the list that I was called.

The waiting

I want to explain this part for the benefit of those who might be reading this and are or were waiting for a transplant, and also for those who know someone who is or was in the waiting list. Being on a waiting list means that you have to refrain from taking decisions concerning the near future, such as planning a holiday, changing jobs, getting married, family planning, anyways the list is never ending. Each one has his/her own plans which differ from each other. It makes you feel so frustrated. I mean, what will happen if I book a holiday and then you will be called in for the transplant. You just have wasted money, since being on a waiting list excludes you from being covered by insurance. Not to mention letting down my family who after planning the holiday have to refrain from taking the break they deserve and have dreamt of.

I still recall how this used to irritate me. I also wanted to change jobs but whenever I went for interviews and got shortlisted, I was refused when I used to tell them that I am waiting for a transplant. I’m not blaming anyone, since although anyone can do an operation any day, in my case apart that I was not aware when the transplant will take place, you only get to know about it a day before.

The type of employment that I was into required project planning and implementation. So imagine leaving everything all at once or having to postpone a client’s deadline at the expense of the company you work for. In fact during the time that I was awaiting my second transplant (yes, there was a second transplant), I actually changed jobs. I was employed at a private company as a Marketing Communication Coordinator. Yes, I did tell the person who conducted the interview that I was waiting for a transplant. But, he took the so-called ‘calculated risk’ and hired me. So far, so good. Except, when just after seven weeks in employment, I was eventually called for the operation. He, together with his wife visited me at hospital and even brought me a nice bouquet of flowers. Extremely nice of him! But, alas after returning to work one month later, things changed. Part of my recovery included that I do not drive for a vast period of time, reason being my poor vision and to give time for my eye stitches to heal. Part of my duties were to go for appointments at the clients’ premises. Being that I could not drive, the security used to drive me to and forth for appointments, so I was being perceived as an expense for the company. Consequently I was made redundant. Being that I was still on probationary period, I could not sue him.

Anyways, I am currently reliving the tension since I am waiting for another transplant. My first transplanted cornea has deteriorated. My mobile phone became my source of hope. I jump whenever the phone rings, thinking that it’s from hospital. I became obsessed again with watching the news. Whenever there is an accident on the news, the first question that pops in mind is the age of the victim and the cause of his/her death. And if the victim ticks all my criteria of an ideal candidate for a transplant, I will attach to my phone like a fetus to a womb. This waiting is making me very anxious. Even my closest friends divert their thoughts on me whenever they hear of a fatal accident. When a person is reported in danger of dying, I monitor his/her progress to see if he/she can be candidate. Don’t take me wrong. I feel terribly sorry whenever there is an accident, and pray that the persons involved recover, but at times I only focus on benefiting from it. Hope this doesn’t make me a virtual serial killer! Anyway, let’s continue talking about the cure.

The call

Well actually, I did the call! Hearing the news in the morning on my way to work made me jump with excitement that day. A 26 year old man that tragically succumbed to his injuries left his organs to help the others. Sparks were coming out of my head. As soon as I arrived at work, I rushed to the first telephone and called the hospital. Just a few days ago, my ophthalmologist had promised me that the first cornea that is made available will be for me. The person who answered the call might have thought that I was suffocating in something, since I was talking too fast and out of breath. When she put me through the right department, I was informed that in fact they were trying to call me at home. It was the Year 2000, and being that mobile phones were very limited on our island. hospitals used to call on fixed lines only. I couldn’t believe this was true. I was to be at hospital the following morning. Woohoo! Adrenaline rushed through my veins. I was super excited, but I had to get down to work. I started giving a handover to one of my colleagues on what was pending and what must be done in these two months recovery period.

The cure (part 2)

Well, as I said I was around 20 when I did my first corneal transplant. It was the first time I was ever admitted to hospital. I checked in at the hospital one day prior to do some routine check ups before the operation. It was the first time in my life that I was to be operated. I still recall the nurse walking me down the white hospital corridor with the stretcher, and me, waving to my family and joking about the situation. But the nearer we went to the operating theater, the more frightened I became. I was trembling and shivering at that moment, but that was expected after all. Some minutes later, I was out of conscious. The moment after I was back on my hospital bed, with my eye covered and with a feeling of severe sore throat. Sincerely I was wondering whether I have been operated in my throat or in my eye!

The process of post operation followed with drops every hour and anything that entails for the healing. After a week at the hospital I was back at home. Returning home never felt so good. When the bandage was removed I could already notice that I could focus better. Weekly checkups, which later became monthly followed and thanks to my lucky stars, the progress was very smooth. I could see the credits at the end of a movie, read the small prints on the back of a packet of snacks and read adverts on billboards more clearly. A year after, I got the stitches removed – 16 in all. These were removed bit by bit leaving a couple there. The pain was excruciating – something that I wish to eliminate from my memory, hence I will not go into detail of how the procedure went.

The waiting (again)

During a routine checkup, the ophthalmologist informed me that the keratoconus in my right eye had progressed to a point that it must get transplanted. Again I was placed on the donors’ waiting list. Again, my anxiety rose up to the sky, awaiting for that call. Gosh, I couldn’t even plan my wedding day. However, the wedding was something that was to be carried out. And so, I planned a small wedding with a low budget, so at least if I will be called for the transplant, I will lose only a small deposit of money. The wedding came and went. I changed jobs as well during the waiting time, to which you already read about the outcome.

The call (again)

The day when I received the call arrived as well. I was at home doing some chores, since it was a Saturday. My mobile rang (yes, it was 2003 and mobiles were at hand) and when I replied, the person on the other end told me that they have a cornea for me and that the day after I was to be at hospital for the operation. The joy one feels is one that cannot be described easily. You have to literally pass from that experience to understand it.

The cure (part 3)

Well, second time has its pros and cons. You know what to expect with the good and bad. The process went very similar as the one before and in general all was smooth, except the part of the stitches, to which I dread so much.

The birth of my baby boy gave me a new hope for life. Having a transplanted eye means that you have to give birth by a C-section. It went smooth. However, giving birth to a baby triggers a lot of hormonal changes. Although no research confirms this, it was noticed that keratoconus is related to hormones, hence normally it develops during puberty. In fact, while I was pregnant, a stitch was removed automatically. It happened during the night. I remember I woke up with a pain in my eye that I just could not bear. The pain and discomfort was not normal, so I went to the emergency. Luckily, I found my ophthalmologist on duty, who immediately realised that one of my stitches went off.

Way forward

Despite of having both eyes transplanted, I still had huge problems when it comes to vision. The transplanted eyes had severe irregularities and this led to loss of focus in both eyes. I was introduced to a person whom I perceive as my hero. A very humble, intelligent person, who as a profession is a physicist and a contact lens fitter. The patience and perseverance that this person inputted to make my life better is exceptional. My right eye was fitted with a lens to correct the irregularities of my cornea. At first I was fitted with a hybrid lens. I never thought that I would be able to see the world again with so much definition. It was amazing. The journey was not so smooth of course, but the benefits you reap when you regain your sight outweighs all the pain and discomfort that one has to go through with this lens.

At times, my eyes became so irritated that I had to revert back for a week or two wearing my glasses. My eye becomes irritated after just a few hours that my lens is in. But for those few hours, I am very thankful. The hybrid lens was not being tolerated anymore by my naughty eye. The fitter tried fitting me with all sorts of fitting. Then he tried the scleral lens for me. It was researched that scleral creates less allergies than hybrid lenses. I am currently using the scleral in one eye, and am satisfied with the results. However, after a few hours in my eye, it still becomes red and sore. But I am afraid to speak up, since I fear that no lens can be tolerated anymore by me.

Again on the waiting list

After sixteen years of having my first transplant, I had an abrasion in my left eye. Following many visits and tests, it was confirmed that I have to redo a transplant. This was two years ago. I do not see anything from this eye, but I rely on my right one, of course when I am with the lens. Waiting again for that call, waiting for the right moment. I am only surviving with partial eyesight from one eye. Until then, farewell. Hopefully will update you soon.

For those who helped me in this journey

Well, thanking these people verbally will never be enough. I wish to thank first and foremost the families of both my donors. I had the privilege to meet the family of my first donor in fact. I can only imagine how hard it is to take the decision of giving your loved one’s organs and helping others in such a tragic and sad moment. A big thank you goes out to my ophthalmologist Profs Thomas Fenech who had supported me for these last twenty years. May God keeps His hands on him to grant him the opportunity to cure those who like me are in need. Thanks goes as well to my lens fitter, Mr Paul Camilleri, who as already described above is a hero that gives so many hopes to persons like me, and is always there to listen and help out. Thanks as well goes to The Transplant Support Group Malta, who promotes organ donation and offer their support to organ receivers, donors and their families. A big thanks goes to my friends who live this journey with me, who worry for me and who became addicted to the news, just for me. Last but not least, I thank my family, who are always there to support me, especially my husband who supports me and who was, is and hopefully will be there for me to pick me up whenever I feel down. Because of you all, my journey is what it is.

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