Tag Archives: Moorfields

I’m voting for the NHS

I’ve never felt so utterly let down and helpless in relation to my own health as I did on Wednesday 27 May 2015 when, after a dash to Moorfields Eye Hospital at the crack of dawn, I was diagnosed with my fifth retinal detachment.  After several hours of waiting and various examinations, I was advised to go home as they wouldn’t be able to operate that day.  As any RD patient will know, retinal detachment is a medical emergency, leading to loss of sight if not treated swiftly.  In cases where the macula has detached, a delay in surgery of up to one week won’t really affect the final visual outcome, but if the macula is still attached, surgery within 24 hours is strongly recommended.*

At the point of this diagnosis, my macula was still on.  The reason Moorfields couldn’t fit me in for surgery that day was that they’d had a number of other patients in that morning with retinal detachments.  As I’d already had multiple detachments, the prognosis for a good visual outcome in my case was poor, and I was told that I wasn’t a clinical priority.  To say that I was upset by this was a massive understatement.  “But I’m in hospital… you’re supposed to help me, not send me home!  It isn’t even just any old hospital – this is the world-renowned Moorfields Eye Hospital!”, screamed the voice inside my head, in disbelief and dismay.  But there was nothing to be done.  When I asked one of the doctors if it was worth waiting in case they were able to operate that day after all, he advised me to go home and wait for a ‘phone call.

I trudged back to the station along with my sister, with a heavy heart and failing eyesight as the detachment continued its relentless progression.  My sister was furious, and fumed about the unfairness of them sending me away.  Although hugely upset, I pointed out that there was little which the hospital could do.  If they didn’t have the resources to cope with the number of patients, it was only logical that they’d prioritise cases which had the best chance of a good outcome.  I didn’t blame the hospital, but understanding the situation did nothing to diminish its terror.  I spent the rest of that day, and the night, and most of the following day gradually losing more vision in my eye and feeling absolutely petrified that my macula would detach again.  Eventually, I received the long-awaited ‘phone call from Moorfields in the early afternoon of the following day.  I was told to go in immediately, but warned that they still may not be in a position to operate that day.  Fortunately, I eventually went into surgery that evening, and it was around 9pm when I emerged from the operating theatre.

It’s bad enough having to cope with the trauma and ongoing anxiety of RD, without having the additional worry that the hospital may not have the resources to be able to help when needed.  Clearly, this goes for any serious health issue.  If something grim happens, we want to be able to rest assured that at least we’ll receive the best treatment available and will be well cared for.  But how can we expect this to happen if the NHS isn’t cared for itself?  In January, the British Red Cross warned that the NHS was facing a ‘humanitarian crisis’ as hospitals and ambulance services struggled to keep up with increased demand.  There were horrific newspaper articles describing patients on hospital trolleys piled up in corridors, as well as chronic bed shortages and staffing problems.  There were shocking reports of deaths which occurred partly as a result of these issues.  It’s common knowledge that there are serious problems in the NHS and unfortunately many people have first-hand knowledge of this, to a greater or lesser extent.

Yet, despite the fact that demands on the NHS are increasing, it appears that the Conservative and Liberal Democrat coalition and the current Conservative government have put less money into it than it has received in the past.  Have a read of this BBC article, which states that the average annual rise of money going into the NHS since it was created in 1948 has been just over 4%.  During the Labour government under Tony Blair and Gordon Brown, it was almost 7%.  Now, numbers aren’t my strong point so bear with me here and please correct me if I’m wrong, but if you have a look at the chart under paragraph 6 of the above article, it looks as if the average annual increase in government spending on health from 2009/10 to 2014/15 was only just over 1%.  Note the points made beneath the chart:

As you can see the period since 2010 has seen the tightest financial settlements. What is more, the spending squeeze is continuing during this Parliament at almost exactly the same rate, even with England’s extra £8bn going in.

Ministers in England are right to say they are increasing funding – it’s been frozen in Wales and Scotland – but it’s just that it doesn’t compare favourably with what the NHS has traditionally got.

Indeed, the Institute for Fiscal Studies believes over the 10 years to 2020, the NHS budget across the UK will not have increased enough to keep pace with the ageing and growing population.

Not only has the Conservatives’ lack of sufficient funding for the NHS had a hugely detrimental effect, they also appear to be pretty much kicking the NHS into the ground with many of their other policies.  We had the junior doctors’ strikes as a result of dangerous contracts being enforced upon them; we currently have the risk of EU workers (including doctors and nurses) relocating because the Tory government won’t guarantee their rights following the referendum result; the 1% pay cap for NHS staff is resulting in nurses resorting to food banks and creating a recruitment and retention crisis; and the abolition of NHS bursaries has led to a 23% drop in applications by students in England to nursing and midwifery courses at British universities.  The Tories really do seem to be a tad short-sighted when it comes to planning for the future, don’t they?  I’d recommend that they all go and get themselves checked out at the nearest decent eye clinic, but then that would just clog up the clinics even more than they are already…

As well as doing a considerable amount of highly depressing background reading on this matter, I decided to check out the opinion of friends and people I know who actually work for the NHS and who therefore have inside knowledge of the situation.  I think it speaks volumes that I haven’t yet found anyone who thinks that it would be a good idea to vote Conservative in the General Election on 8 June.  Several of the people I know who work for the NHS are already actively and urgently encouraging people not to vote Conservative if they care for the NHS.  One friend responded to my quick ‘poll’ question of, ‘Do you think it’s a good or a bad idea to vote Conservative with the NHS in mind?’ with the comment:

I think it’s a bad idea to vote Conservative full stop, but yes, a Tory win will be bad for the NHS because they are privatising by stealth and setting us up to fail so that they can sell it off.

She ended this comment with a red, frowny, ANGRY face.  This is someone who always seems relaxed and chilled-out, and I don’t think I’ve ever heard her raise her voice.  Someone else who works for the NHS and responded to my poll told me that she doesn’t know anyone at her workplace who would vote Conservative.

There are numerous additional reason as to why I won’t be voting Conservative on 8 June but – for me – the NHS is the most important one.  From everything I’ve read and people I’ve spoken to, it seems very clear that in order to vote for the NHS I need to vote for the party most likely to keep the Tories out, and so that is exactly what I shall be doing.

*I’m sure this was previously stated in the NICE guidelines concerning retinal detachment but, upon checking, I found that they appear to have been amended… hmmm.

 

Strong and stable?

I was feeling about as strong and stable as a certain indecisive woman’s preposterous policies when my sister and I set off in the grey drizzle for my appointment at Moorfields Eye Hospital on Monday morning.  My last appointment hadn’t gone as I’d hoped, and I was convinced that they’d be booking me in for my much-feared sixth lot of surgery this time.  With an eye full of oil and rising intraocular pressure, it seemed that the only way was up (baby!) in terms of the latter.*  I’d spent the previous week or so in a state of mounting anxiety, and things weren’t helped by a run of stonking headaches, increasing queasiness and belly ache as the dreaded day loomed closer.  Just in case I was in any doubt about my state of inner turmoil, my subconscious saw fit to remind me of it in the form of nightmares on the rare occasions that I managed a bit of decent shut-eye.  I dreamed of being trapped in my house as the sea roared and raged ever closer, flooding my garden in giant waves and seeping into my place of sanctuary.  I should add at this point that the sea is about a mile away from my house, so this was a most unlikely scenario.  However, it felt so real that once I’d woken and calmed my thudding heart, I peered through the bedroom curtains to check the windows for salty spray.  Drumming home the point, the following night I had a terrifying dream in which I couldn’t see properly out of my good eye.  Each time I tried to blink the floaters away and focus on something, it appeared as a blurry mess of confusion – just the same as the vision in my bad eye.

Things weren’t improved on appointment morning, when we missed the train we were aiming for and, upon arrival at Moorfields, discovered that the grumpy receptionist was on duty in the clinic.  (Well, it was a Monday morning to be fair, so she had every right to be grumpy.)  Lucy somewhat gleefully pointed out that it was All My Fault that we’d missed the first train, as I hadn’t been as punctual as her in getting myself ready.  I protested that the reason for this was that I’d been trying to force my breakfast of peanut butter on toast into my churning stomach (much to the dog’s benefit and subsequent surprised delight).  My taught nerves required me to pay an urgent visit to the facilities before we descended to the clinic, so Lucy went ahead to book me in.  The grumpy receptionist lived up to her name when she stared at Lucy in disdain and demanded, “But where is she?”.  Fortunately, I appeared shortly after this and she waved me through without further interrogation.

We settled down for the usual long wait but were taken by surprise when the nurse called me through within the space of a few minutes.  Visual acuity was as expected, and then came the pressure check, which I’d pretty much been worrying about ever since my last appointment back in January.  I held my breath.  Then I reminded myself to breathe, in case holding it affected the pressure.  I opened my eyes wide and stared straight ahead as the nurse advanced with the pressure monitor and I waited for it to flick against the surface of my eye.  As always, she took a few readings in each eye and then stood back and declared, “21 in the right and 20 in the left.”.  “Ooooh, it’s gone down again!  That’s good, isn’t it?!”, I exclaimed.  She agreed, and proceeded with the dilation drops.  I smiled through the stinging and watering as I felt myself relax ever so slightly.

We headed out to waiting area number 2 and settled in again – it’s always best to expect a long wait and this time we weren’t disappointed.  I dampened my sandpaper mouth and we ate bananas, discussed politics, and played ‘I Spy’ as my pupils dilated and my vision blurred.  Each time a doctor appeared carrying a particularly bulky file, I braced myself in expectation, as we waited… and waited… and then waited some more.  After a while I gave up on watching out for thick files and eventually I was called through by a doctor I’d never seen before.  I already knew that my consultant – ‘the Prof’ – was away that day, as we’d spotted it noted on the whiteboard as we’d entered the clinic.  This did nothing to calm my screaming nerves.  We later discovered that he was away at a conference, so I like to think that he was sharing ground-breaking research about a cure for PVR.

The doctor I saw was extremely patient, giving both eyes a thorough examination before checking my right eye over a second time.  Much to my delight, he was very receptive to questions, which we naturally took full advantage of and obtained answers to even more than the nine on my pre-prepared list.  My shoulders slackened slightly as he told me that everything looked the same: the area of detachment beyond the laser line hadn’t progressed any further, the abnormal blood vessels were the same, and the oil wasn’t causing any problems at that point.  He emphasised that I must return to A&E if anything changed, adding that I would know in my gut if I experienced anything which needed to be checked out.  He then went on to pronounce that word which is far more meaningful when coming from the lips of a retinal surgeon: ‘STABLE’.  As my eye was stable (aaaah… bliss!), he didn’t see the need to rush into further surgery and therefore asked me to return for another check in six months.  Resisting the urge to kiss him, as I suspected this would be frowned upon, I thanked him warmly instead and headed out to make my next appointment with the grumpy receptionist.

The grumpy receptionist took the full force of my delight and relief, as I gleefully told her that I didn’t have to return for six whole months and added that I felt as if I’d been given a wonderful present.  She smiled, and I observed in a most uncharacteristically chatty manner that we usually saw her in my previous clinic rather than ‘the Prof’s’ clinic.  We were treated to another smile as she explained that someone was off sick, and then she ominously remarked that she’d seen my name on the list that morning.  Considering the huge numbers of patients she must see, and knowing that in my own job I only tend to remember the names of people who are either very nice or incredibly annoying, I briefly wondered which category I fell into.  However, after further chatting as she made my next appointment, she smiled again before bidding us goodbye.  We skipped out into the London streets, where we discovered that the grey drizzle had given way to weak sunshine.

Word that I was in celebratory mood had clearly spread, for as we piled onto the tube and sat down, two men clutching saxophones (soprano and alto) climbed aboard along with another guy who turned out to be the singer as they broke into a jazzy version of ‘Hit the road, Jack’.  Ignoring the stony-faced feigned oblivion of most of our fellow passengers, Lucy and I grinned at each other and bopped along in delight, receiving a nod and thumbs-up from the singer in return.  We continued to celebrate my good news by treating ourselves to posh sarnies from M&S (good eye food ones, obviously).  I demolished my share with gusto as we journeyed back on the train; my appetite having made a welcome return.

*You may like to check this out if you’re wondering what on earth I’m talking about: https://www.youtube.com/watch?v=hOMvs_1UFCk

Paintings for sale!

“What can I do to help my eyes?”, has been a recurring and increasingly desperate question put to various surgeons during my hospital appointments over the past couple of years.  To my dismay, I’ve always been told that there’s nothing that I can actually do, although there are certain things which are certainly best avoided (have a read of “Don’t get a head trauma”, if you’re wondering what).  However, one positive thing I am able to do is to fundraise for Moorfields Eye Charity, and this is the main reason I’ll be taking part in Eye to Eye again, in March 2017.  Although this isn’t helping my eyes directly, there’s a possibility that the results of research undertaken by Moorfields may benefit me in the future.  And if it doesn’t, at least I know that it will be helping other people suffering with sight-threatening conditions.  With this in mind, it seems like a good idea to have  a bash at selling some of my paintings and donating the proceeds to Moorfields Eye Charity.

Although I’ve sold a reasonable number of paintings in the past, I haven’t ventured down this route for many years.  Two of the little galleries which took my work have now unfortunately closed down, and the third has expanded into an enterprise which no longer has space for the likes of me, exhibiting work for sale at jaw-dropping prices by well established, proper artists who are actually able to make a living out of putting oil on canvas.  Selling work through galleries probably wouldn’t be the best method of raising money for charity anyway, as usually they insist that paintings are framed first (which can be pretty expensive), and they commonly take between 20% and 30% commission.  Having said that, nothing quite beats the confidence-boost of being contacted by a gallery with the news that a complete stranger has parted with their hard-earned cash in return for one of my paintings.

But I digress.  The point is that I now have quite a collection of paintings propped up against the walls of my spare room, which I’d be happy to part with in order to raise money for a cause which is very important to me.  I’m not going to start putting price tags on them as I was always hugely embarrassed at that aspect of selling my work and asked the galleries to price them for me.  A painting is only worth what someone is prepared to pay for it at the end of the day.  They’re all oil on canvas, and  if you hover over each image, you should be able to read the titles and dimensions.  If you’re interested in any of them, please drop me a message or an email, or just comment on this blog post.  Feel free to share, if you think others may be interested.  There are no prizes for correctly guessing which were painted before my retinal detachments and which were painted afterwards… 😉

Note: An explanation of ‘Eye Chart’ can be found in the blog post, Oil on canvas.

 

 

Oh silicone oil, I thought you were my friend… :-(

After my previous appointment at Moorfields back in July, when I was granted a six month reprieve from further surgery as my consultant believed it would be best to simply monitor my pesky peepers for a while, I practically skipped out of the hospital in delight and relief.  The six months whooshed by all too quickly and before I knew it, my next appointment was looming ominously on the horizon.  As the days passed, my nervousness grew and niggling headaches became a regular feature of my days; not helped by my job, which involves sitting at a computer screen for much of the day.  However, I told myself that hopefully all would be well and that with any luck they would simply grant me another six month reprieve.  So off I set for Moorfields on Monday morning along with my sister, both of us feeling fairly hopeful.

We descended to the clinic in the basement of the hospital, clutching cardboard cups of comforting tea, by now well accustomed to the forthcoming hours of waiting and people-watching through blurred, dilated eyes.  Strangely, most of the chairs were vacant, so we selected a prime spot which afforded us a look-out point to observe which consultants were on duty as well as being able to keep an eye on the whiteboard behind the reception desk, which at that time was predicting a two-hour wait.  I’d just got settled and started to blow on my tea when my name was called, causing me to almost drop the cup in surprise.  My sister and I looked at each other with startled faces and off I went for the first check with the nurse.  I was encouraged by the fact that I was able to slowly read the second two letters on the eye chart with my right eye, but my proud grin fell when the pressure check revealed a pressure of 24 in my right eye and 20 in the left.  Normal eye pressure is between 11 and 21.  During the stable period of the past year or so, the pressure in my right eye has varied between 17 and 19, so 24 was somewhat unusual.  Surprisingly, there wasn’t too much time to fret about it, as we only had to wait a few more minutes once the dilating drops had taken effect before I was called through to the consultant in record time.

Once again, I was asked the dreaded question, “How do you feel about having more surgery?”  Once again, I suppressed the urge to scream and hide under the nearest desk and instead admitted that I’m utterly terrified at the prospect of further surgery, but will do whatever they advise is clinically best.  Of course, unfortunately things are rarely that clear-cut.  As things stand at the moment, if they were to remove the oil, the retina would certainly re-detach.  So the plan is to remove the oil and carry out further work in the form of another retinectomy (i.e. cutting away part of the retina which won’t lie flat), more laser, sorting out abnormal blood vessels, and then either more oil or long-acting gas back in.  With the oil in, there’s less chance of a full re-detachment as the oil holds the retina in place and doesn’t disperse as the gas does.  For this reason, I love the oil.  It’s like my little security blanket.  But silicone oil in the eye also brings the risk of certain side-effects, such as high pressure which could then lead to glaucoma, emulsification of the oil, and scarring of the cornea.  These potential side-effects frighten me as much as the possibility of re-detachments, as it’s my understanding that ultimately they would also lead to further sight loss.

After examination, extensive discussion, and a further consultation with ‘The Prof’, it was decided that I should return in three months.  Although not immediately worried about the rise in pressure, both surgeons noted that it will need to be monitored and that they will need to take the oil out if it starts to creep up.  Of course, I’ve known about the potential complications of the oil for some time, so it wasn’t as if this was a surprise.  However, it was certainly a pretty major blow.  No longer is it myself and my silicone oil against the world.  Instead, it appears that my friend may be turning traitor.  So it seems that I’m once again occupying that most uncomfortable of areas, between a rock and a hard place, which I wrote about some time ago.  The only difference is that this time it seems likely that the issue will be decided by my pressure readings.  😦

Eye to Eye 2017: Lucy’s story

 

Eye to Eye 2017: Alex’s story

Alex, at Moorfields Eye Charity's reception in 2016

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!  🙂

Dr Google

Come on, admit it – we’ve all done it.  You know the kind of thing I’m talking about… For example, you notice a pain in your foot and after a few days of it niggling away in the background you head to Google and type in the seemingly benign phrase, ‘pain in left foot’.  A few clicks later, you’ve diagnosed yourself with club foot, a touch of gout, fallen arches, frostbite in the toes, arthritis in the ankle, and severe gangrene which is so far advanced that the only treatment available to you is amputation above the knee.  You hobble to the kitchen, wincing at each step whilst trying not to put any weight on your doomed limb, make a cup of tea and return to Google.  By this point your lower lip is trembling so much that you can’t even drink the tea.  You stare at the screen with wide eyes and a white face as you skim through forums in a desperate search for something positive, but discover nothing but horror stories fit to rival ‘Frankenstein’.

Such was the case when I received a copy of a letter from my original consultant to my GP way back in approximately August 2014 which contained the phrase ‘PVR’.  They say that curiosity killed the cat, and quite frankly it’s extremely fortunate that I’m not feline.  “What’s PVR?”, I wondered, as I fired up my ancient laptop and headed for Google.  Once it creaked into life, I found that I rapidly regretted this course of action as I read that PVR (or proliferative retinopathy) was a complication of retinal detachment, occurring in approximately 8-10%  of patients.  Google calmly informed me that further surgery could be undertaken to treat the PVR and reattach the retina, but warned darkly that the final visual outcome was very poor.  Just to torture myself, I read on and learnt that PVR is the most common cause of failure in retinal reattachment surgery.  Of course, inevitably, at this point Mr Pip made an appearance and took great delight in prodding and poking me, quietly laughing at my discomfort as my mood plummeted and my fears for the future rocketed.  (Have a read of The Unwelcome Visitations of Mr Pip, if you haven’t had the (dis)pleasure of meeting this exceedingly nasty fellow.)  Meanwhile, my sister, who has that sisterly sixth sense of knowing when something isn’t quite right, discovered what I’d been up to and banned me from googling any more information to do with my eyes, appointing herself as my online research assistant instead.

At my next hospital appointment, I tentatively asked my consultant about PVR and confessed to having looked it up.  He gave me a telling-off, albeit a gentle one, and pointed out that those medical letters are written from one doctor to another and aren’t really meant for the patient.  It was a fair point, but when the letters are copied to the patient, they’re somewhat difficult to ignore!  Fast-forward a few months to my first appointment at Moorfields, and I received a similar response from the nice Irish nurse as she shook her head, rolled her eyes and sighed, “Oh no, not Dr Google!”.

I have many faults, but as stupidity isn’t one of them you’d think I’d have learnt my lesson from this.  Apparently not.  The next time I saw fit to consult Dr Google was after my most recent hospital appointment back with my original consultant at the Royal Surrey.  As always, a copy of his letter to my GP arrived on my doormat a few days later.  Upon reading, ‘Anterior segment examination revealed a right afferent pupillary defect’, I was a little unsure but not overly worried, assuming that this simply referred the fact that my right pupil no longer works properly.  For months after my last surgery it was permanently dilated, making bright lights a complete nightmare to deal with.  Over time, it gradually returned to something similar to its original size, and many months ago I noticed that it no longer worked properly at all – i.e. when in low light, it no longer seems to dilate as the other one does.  As Moorfields had already told me that the permanent dilation was probably a result of all the laser surgery and hadn’t mentioned anything in relation to my pupil at the numerous follow-up appointments, I assumed it was nothing to worry about in the grand scheme of my spectacularly buggered up eyes.  But that phrase in the letter made me want to just double-check.

I typed into Google, ‘afferent pupillary defect’, and settled back to read the results.  In horror, I skimmed phrases such as ‘lesion of the optic nerve’, ‘severe retinal disease’, ‘multiple schlerosis’, and other sentences which didn’t serve to help matters, such as: ‘Afferent pupillary defect can be an ominous exam finding’.  “But, but, but”, I stuttered to myself, “Surely it’s just my dodgy pupil?!  But why didn’t he say anything about it at the time so that I could have checked it was nothing to worry about?”  So I continued to read and click and worry a little bit, until I found the confirmation I needed, that ‘a patient with a history of total retinal detachment in one eye would manifest a relative afferent pupillary defect’.  Once I’d found the same information on a few reputable sites, I began to calm down as I muttered a few choice expletives at both Dr Google and the offending hospital letter.

Obviously, my curiosity is such that I’m unlikely to simply stop looking things up and hunting around for information.  But when I’m thinking calmly and logically I’m very much aware of the necessity to check reputable sites and also to ask the consultant about anything I’m not sure of.  I tend to use sites such as Moorfields Eye Hospital, the NHS, RNIB, Fight for Sight, and the Thomas Pocklington Trust.  I occasionally also delve into research articles, although these can often be something of a challenge to understand completely.  They can also be massively depressing at times.   I guess the moral of the story is ‘consult Dr Google with caution.’