Peer support is one of the main pillars in the life of a patient. More and more patients will fill an obvious role in society in general and within the complex world of health care in particular. This also applies to the corneal grafting patient.
I'd like to take you on a journey with a story of a corneal grafting from personal experience. It is my story and based on facts. A story that will give insight, to a greater or lesser degree, in how I have dealt with a corneal disorder. It might even give some inspiration!
From 20% to 100% eyesight
What would be your plan of action when you are in college and want to earn some extra money? Yes, you look for a job. No news there. It must have been in 1976 (I was 18 years old) when someone mentioned I’d make a good postman. At the time being a postman was still a full time and respectable job. After the interview I was told that I had to take a medical examination, which did not make me change my mind. The medical examiner patted me on the back, looked me in the mouth, tapped on my knees and asked me to read the letters and figures on an illuminated sign on the wall. I looked at the wall and saw a white plate with indefinable characters. And so I told the doctor. He looked at me in surprise. But honestly ... I did not see anything on that board on the wall.
And so I was referred to the ophthalmologist, who could see me within a couple of days. Sitting in front of an unknown device, the doctor looked at my eyes. To this date, I remember exactly what she said: "Mmmm. So, this is interesting!" What she saw was a cornea that had a bulge without a nice dome shape. Visibility? 20%, she noted. Both left and right. I was shocked. I thought I had normal sight. Okay, I had to strain my eyes sometimes to focus and slightly squeeze a little to read, but I was really under the impression that my eyesight was normal. Later I understood that the brain adapts to the vision and as the changing pointed shape of the cornea is still fairly gradual, you have almost no idea that the visibility is very poor. After all, no one knows what other people see and people have no idea that they do not see what they cannot see.
So, this condition is called keratoconus. To help me see better I was sent to the optician. In my case it was Oculenti in The Hague. I received my first pair of contact lenses after a week. And you know what, it literally opened my eyes. It was unbelievable; I thought what I saw was all there was to see, but now I knew that I really had hardly seen anything for months. And with the lenses, my sight was 100% in both eyes.
Time proceeded and it must have been sometime around 1980. I struggled to keep the lenses in my eyes. The progression of the jagged distortion of my corneas made the lenses wobble in my eyes and on many occasions, when I blinked, looked left or right, the lenses unexpectedly came loose, hang at my eyelid, my cheeks, or worse, fell on the street. Gradually, more and more small pieces of debris got stuck between the lens and eyes. And so the dust and sand scraping between the lenses and the eyes caused minor damage and scars (erosions) to my cornea. All very painful. I was now 22 years old. I felt limited in my comings and goings, and of course this was not really visible to the outside world, but a handicap stays with you 24/7. A corneal disease puts a strain on your system, mentally and physically. Where will I go from here? Can I go on living like this? What will the future hold? Hard questions, and questions you really should not have to answer at that age. That’s how my sister felt too.
Precisely at that time my sister read an article in Good Housekeeping, an interview with an ophthalmologist. If I remember correctly, the article was about "lacemaking". Lacemaking? Well, the art of making intricate patterns with thread and a bobbin, hundreds of buttons, together with the craftsmanship of an ophthalmologist who was involved in corneal transplants. This young ophthalmologist worked in 1982 in the Diaconessen Hospital in Leiden, the Netherlands. She was ambitious, driven, focused, with a pleasant degree of professionalism. As a six-year-old girl, she learned the fine art of needle work from her great aunt. In the interview, she mentioned that being competent and having fun at fine needlework helped her as an ophthalmologist/surgeon specializing in corneal disorders.
My sister read that article and immediately recognized the link to my physical and mental condition. She called this ophthalmologist and made an appointment for a consultation. That was my first encounter with Dr. Völker-Dieben, co-founder of the HPV-association. However, she immediately tempered my expectations. She explained that even though I had a serious problem with my eyes, a transplant is not always the solution. From that moment on I was her patient.
Several months later that year, I received a phone call at work. There was a donor available and I needed to immediately go to Leiden. At that time, the donor cornea had a limited shelf life. I was operated on my left eye that same day and was in hospital less than a week. Today, advancing technology makes this quite different. The donor cornea that I received, is still properly functioning. This also applies to a lesser extent to the donor cornea I received a year later for my right eye. It needs no further explanation that I became a registered donor from then on.
After a period of a year or two of intense use of eye drops to combat graft rejection and spectacles as a corrective tool to bring my vision up to par, I eventually switched back to lenses. Fortunately, technology also progressed too in the field of medicinal lenses. I have had many types of lenses that positively influenced my eyesight and hence my wellbeing without exception.
In the late nineties my right eye sight worsened. Dr. Volker-Dieben had moved in the meantime from Leiden to the VU University in Amsterdam. I followed her and she diagnosed a condition in my right eye behind the retina. I cannot not use technical terms, medical jargon as I am no specialist, but it turned out that small pieces of tissue behind my retina had died. An effective treatment was not at hand at the time. I've accepted that I see very badly with that eye. Of course there are times when I am worried, but so be it ... from the early eighties I have been blessed with full vision. Nobody can take that away from me.
32 year donor cornea
2016 is fast approaching. I have now lived for over 32 years with donor corneas. I feel blessed that it did not limit me significantly in my work life and social functioning. It still has not. Sure, I 'feel' my eyes the whole day; I shun the light. Scattered light is not a new phenomenon for me. I wear my sunglasses often, even though it's cloudy weather. Dust in the air .... oh yeah; it still hinders me a lot. During the day I take out my lenses to 'refresh'. Visibility in the dark requires a lot of concentration. These are just a few things I have to deal with daily. I know what it means to accept disappointments. I know what it is to always have pain in your eyes; I experience the mental impact. All of this; but I'm also very conscious of the fact that I am able to function normally in society.
A few months ago I was diagnosed with a slightly clouded cornea in my right eye, which might lead to rejection after more than 30 years. And so the story continues. Dexamethasone drops. I'm not worried. In recent years I have very positive experiences with ophthalmological care. Prof. Dr. Völker-Dieben retired some years ago. Her knowledge and expertise have been transferred to a new generation of ophthalmologists. I have the utmost confidence in them and the technologies that they use.
This story is not just another story. It is my personal story, which I like to share; which needed sharing. After all, "Peer support in practice", that's me ....