On 12 March 2017, my sister and I will once again be walking 14 miles from Moorfields Eye Hospital to the London Eye (via the scenic route) to raise money for sight-saving research. This year, we’re taking part as a team, along with other people who have been affected by retinal detachment. I thought it would be interesting to share the stories of my fellow team-members, so first up – meet Alex. My sister and I met her at the station when we were on our way to take part in the Eye to Eye walk in March 2016 and we’ve remained in contact. Alex’s clinical diagnosis was retinopathy of prematurity. She was born 12 weeks prematurely and weighed about 2 pounds. Retinopathy of prematurity occurs when the retinal blood vessels fail to develop properly in babies that are born too early. This causes abnormal blood vessels to grow, which can lead to the formation of scar tissue, which can subsequently result in retinal detachment. So now, it’s over to Alex…
Once upon a time life, although not sorted, was progressing as it does; quickly it seems as I got older! I had a job where I was part of the furniture and had participated in self defence on a weekly basis for the past eighteen years. 28 December 2010 changed all that. I sustained a light blow to my brow from a rebounded focus mitt. Thinking nothing of it, I went to my independent optician for a routine eye test a week later. When I said I might have a problem and my cheekbone felt double its size, I was asked to go to another optician’s immediately. At this point I should say that I am short-sighted, blue-eyed, and have a lazy left eye (or Stasbismus, for those of you in the know). My right eye is my window on the world. I jumped in my beloved car (eleven months old and nine years of sweat and saving) and off for an eye test.
From then on it was a bit of a blur. Saturday afternoon I could see and read the chart half way, at which point I was diagnosed with a detached retina and told I would need immediate surgery. Three local hospitals would not take me. I happened to say I’d had squint surgery back in 2008 at Moorfields. So it was booked. “What, no work tomorrow?”, I said. “Certainly not!”, came the stern reply. I broke the news to Mum and Dad, blissfully unaware what all this entailed, and drove home… not the smartest thing to do. My sister happens to work in London so said she would accompany me.
Sunday morning I was up before the birds on my way to possibly the most famous hospital in the world. Not my usual Sunday, I can tell you. Just as well the seriousness of my condition did not dawn on me. I bypassed A&E and went straight to the fourth floor: EMERGENCIES. By this point I could only read some of the eye chart. I was asked to sign a consent form, which was all very well but I could not see where to sign and a nurse had to guide me. One of the questions I remember being asked was, “Do you drive?””Yes”, I answered. “We will do our best”, said the surgeon.
I had not done any internet research beforehand, which was just as well really. I made it through after a full general anaesthetic, but was not looking my best. I was eventually dispatched with a full pharmacy of drops and posturing instructions for the next two weeks. The next morning I was back to Moorfields for a post-op check and removal of my patch. All was okay so far – the retina was still in place but the macula had totally come away when the surgeons gained entry (which was not so good). The prognosis was unknown – it was a waiting game. I had a very bloodshot gas-filled eye, although I was assured the gas would disappear naturally in about two weeks. Next it was posturing, which for someone who enjoys the garden, has a job in retail, and never stays still, was my biggest challenge so far. I had to sit upright, not moving my head for the majority of my waking hours. I was allowed ten minutes off every hour, to either eat or for bathroom necessities. Tough call.
An SOS went out to my best friend, who had experienced similar a year earlier. Everything was fuzzy and then a line began to appear like a spirit level – sight slowly returned above the line and it remained cloudy below. I had no idea what was going on, but calm was restored when I could chat to my sole mate and long-suffering friend.
The drops that got pumped into my eye seemed never-ending for a month, but then my two weeks of hell were up and I was back in the clinic. All smiling faces: everything as expected, and I was to return in three months. My brush with blindness put a different spin on things. Apart from those in the know, having eye issues goes mainly unnoticed – it is certainly not obvious unless you have a white stick or ‘pyrex bowl’ glasses.
Time seemed to move at a pace and all too soon Moorfields was back on the agenda with the start of 2011. At this point, it was noticed that my body had tried to heal itself by producing scar tissue over my macula (epiretinal membrane, or EMR). However, all was stable for the time being, until the start of July that year when, one weekend, I had the feeling that something was not right with my left eye. By the Monday, it was as if I was unable to see anything as a whole. I ran to Specsavers, who would not entertain me. With my history, their response was, “Just go to your optician”. No time for that. After work, I contacted the hospital and went the following day. My retina had detached – there was a tear at the top. My left eye wanted to join the ‘exclusive club’. Another round of surgery, gas, and posturing. At least that time I knew what was happening. Work was pretty understanding and I was signed off for another two weeks.
I had just gone back to work having seen my gas bubble disappear, when I noticed that I could only see things above a certain point. Could it be possible? Back to Moorfields A&E just to be told that in a most unlikely event, my retina had detached again, but this time gravity was on my side and the tear at the bottom would be operated on first thing in the morning. I was taken home kicking and screaming, just to return the next day. The consultant on duty that day saw me crumple with tears rolling down my face when he said, “This time we will need to put silicone oil in”, but explained that it would need further surgery to remove it. “We will sort it, don’t worry”, came the reassuring comment. By this time I had seen a couple of hunky anaesthetists, but never stayed awake to investigate. I would just have to dream…
The oil was weird – one can not look through it; there was just thick cloud for the next three months, before it was decided to laser the circumference of my retina. By Christmas 2011 I was having both oil removal and cataract surgery on my left eye, both at the same time. I never realised the NHS did BOGOF promotions! All went well and there was no posturing that time. I was relieved to see the end of 2011 – three lots of surgery in six months was tough!
2012 was crunch time. My right cataract was juvenile and it was my choice as to whether it was removed. This was my good eye, so everything was that much more considered. Needless to say, I went ahead in September 2011 despite the risks, which seemed to have greater significance. Again, it was the same ward, bed, and even nurses – I was beginning to obtain a bit of a reputation. I could see almost immediately, which was a revelation! The surgeons had lengthened my short sight. It doesn’t sound much, but when I tell you that for 40 years I had scrabbled around trying to find my glasses just to get out of bed, and now can even see the lines and dimples on the radiator without specs. The downside is that I will need glasses to read.
The epiretinal membrane was still very much present but my consultant was reluctant to carry out yet more surgery as this is perhaps the most delicate of all and it seemed to be causing no harm, despite knowing that it might tighten over time. In 2013, I was finding it hard not driving as i thought my sight was better than it ever had been before. This was when I really began to struggle, without realising. I started to lose weight, I was never hungry, and motivation was impossible. Was it really because I could not drive? Of course not; it was complex. I will not dwell on it as it brings back some bad memories. I was referred to Moorfields counselling service, and after an extended period of counselling and further treatment from my GP, things improved considerably.
In 2014, I decided that the epiretinal membrane had to go. Even as D-Day approached, I felt undecided, but in the end the registrar on duty allayed my fears by saying, “We treat everyone as though they have only one eye”. The decision to go ahead with the ERM surgery was so difficult because that time it was my own choice. In reality, it was not critical.
Check-ups had become the norm, and clinics were always busy. In fact, Moorfields never seemed to be quiet and they specialise in only one body part! But the time had now come for the powers that be to discharge me, which happened on 4 March 2015. That was when I decided that I had to say thanks and so took part in the first Eye to Eye sponsored walk, in March 2015, to raise money for Moorfields Eye Charity. I will be forever grateful to all the staff at Moorfields for saving my sight.
Of course, this isn’t the end of Alex’s story… those of us who have to contend with complex eye issues gradually realise that although chapters may end, the story continues. Alex’s next chapter involves her brave decision to contact the DVLA in an attempt to regain her licence now that her optometrist has told her that she finally meets the eyesight requirements for driving. She hasn’t driven since voluntarily surrendering her licence in 2012. So if you could all just keep your fingers crossed for her, that would be grand. In the meantime, if you’d like to sponsor Alex and the rest of our team, you can do so at: https://www.justgiving.com/fundraising/rd-ramblers. Alternatively, you can donate by texting: “ISEE66 £5” to 70070 (or whichever amount you prefer, of course). All donations, no matter how small, are hugely appreciated! 🙂