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Posts tagged ‘Moorfields Eye Hospital’

A new solution for dry eyes

Thealoz Duo Gel eye solutionIt’s over 5 years since my last corneal transplant, because of keratoconus. Since then, the only major concerns my consultant has had is that my eyes are too dry, which can cause problems with graft viability. The more corneal transplants a person has, the less likely they are to be successful. I’m now on my second pair of transplanted corneas, so I want these to last me for the rest of my life. 

I’ve used HyloCare drops for many years, but my eyes are still too dry. On my latest trip to Moorfields to see my surgeon, Mr Romesh Angunawela his research fellow suggested that I try a new product called Thealoz Duo Gel. It’s preservative free, an essential for me, because of my allergies. The single-dose vials are fairly easy to use. The gel is quite viscous, so for anyone such as myself with arthritic hands, you need to squeeze quite hard to get all the gel out of the vial. 

The gel can be used at nighttime to keep eyes moist. I’ve been using it when I put in my corneal lenses, because my eyes are usually drier during the day. I squeeze the gel into my scleral lenses and then top up with HyloCare. This is certainly making it much more comfortable to wear my lenses for longer periods. I don’t need to add extra HyloCare during the day to keep my eyes moist and comfortable, which is a real bonus.

Beware, if you by these yourself there are two different products. Don’t get caught out like I did. In the gap between using up the prescription I got from Moorfields and getting them added to my monthly prescription, I bought some vials to have as a standby. I went on to Amazon and placed my order. The first time I used them, I could see they were not as viscous as the ones I had from Moorfields. On checking more carefully I realised I had bought Thealoz Duo Drops – NOT Thealoz Duo Gel. 

The drops are very similar to HyloCare, but as I need the Thealoz Duo Gel and have a good supply of HyloCare, I passed them onto my carer, who also has dry eyes. 

I’m pleased to have found this new product and am hoping when I go back to Moorfields for my next contact lens check-up, the specialists will detect that my eyes are now moist. When I take my lenses out at night, there is still fluid and gel on them. That looks like a good sign to me.

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Everyday Life, Hints & Tips, Medical

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Post-op surgery care

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Throwback Thursday 1

As was organising my writing files, I came across several other articles that were also unpublished – so I’m going to update and post them over the next few Thursdays. 

I was born with a fairly unusual eye condition called keratoconus. It affects about 1 in 5,000 people and causes the cornea to become misshapen. Some people with the condition eventually need a corneal transplant.

I have now had a second transplant in each eye. The first two surgeries were over 25 years ago. My last two transplants were carried out in 2016 and 2017. Most my outpatient care has been at Moorfields Eye Hospital in London. My surgeries took place at St George’s Tooting. My surgical care was fantastic. The nursing care, sadly, was not as good as it should have been. I’ve blogged about this previously.

When corneal transplant surgery takes place, minuscule stitches are used to anchor the graft in place. Over time, as the eye heals, some of these stitches come loose and start to feel very uncomfortable. The sensation is like having an eyelash in your eye. The eye can become sore and painful too. I wear scleral lenses, and over the last few weeks I’ve been very aware of discomfort in my left eye once I’ve taken out my lens. 

On my last appointment at Moorfields, my consultant was away. So I saw his registrar. We decided that because I only had some slight discomfort in my left eye, he would leave the stitches until my next follow up appointment. So I was fairly certain that last week’s visit would include stitch removal. 

Mr Romesh Agranawalah is a highly skilled surgeon who specialises in working with patients who have complex corneal conditions. I am extremely fortunate to be under his care. I present a challenge to eye surgeons, not just because my corneas are badly affected by keratoconus, but because I’m also allergic to local anaesthetic. I’ve previously had stitches removed under general anaesthetic. Removing stitches without anaesthetic is unusual and rarely done. Also, it is sometimes difficult for me to position my head appropriately without being in a great deal of pain. Romesh, we’ve got to know each other well over the past few years, is patient and understanding of my needs. Manoeuvring my wheelchair in the tiny clinic spaces isn’t easy either!

So getting organised and settled prior to being examined is quite a performance. But, as ever, Romesh is unruffled and still finds time to ask about my other health issues. Having examined me, the decision is obvious, two stitches need removing, and a third trimmed. I’m fine with having the procedure. I have trusted this surgeon to repair my vision; he has done this and more. My vision has actually improved from my baseline pre-surgery levels. 

Once Romesh returns with the equipment needed, he makes sure I’m in as comfortable position as possible, and begins his delicate task. Despite having no local anaesthetic, I hardly feel anything as each stitch is cut and then gently removed. I get a break whilst Romesh gets some new scissors. Now, for the last task. It’s slightly disconcerting to see the scissors reflected in the mirror of the slit-lamp, but all I feel is a light brushing sensation. He trims the ends of the stitch. The tricky procedure is over. As always, I thank Romesh. He has literally changed my life by giving me my vision back. I can drive and therefore have freedom.

I can now put my scleral lenses back in and drive to Synagogue in time for the Friday night service. I am grateful, not only for the skill of my surgeon, but for the NHS. We must never forget how important it is that the NHS remains a public service, free at the point of need.

Surgeons like Romesh Agranawalah are the people who make our NHS the envy of other countries. Each day when I put in my lenses, my vision goes from blurred to crystal clear. Almost six years after my last surgery, I’m still amazed at how much I can see. I will fight for the NHS as long as I have breath in my body.

Update: 

In April 2020, during the first UK lockdown, I felt that familiar pricking sensation in my eye, which meant I had another loose stitch. Having had a check-up phone call from the Contact Lens Clinic, they arranged for me to go into A&E at Moorfields and get the stitch taken out. We agreed a date and time so the surgeon on call was aware I was coming in. 

The streets were deserted and remarkably, we had a choice of where to park. My carer drove me, just in case I couldn’t put my scleral lens back in for some reason. We waited outside for about 10 minutes as they were limiting the number of patients in the A&E department, as part of their Covid precautions.

Once inside, I was called to see the consultant within 20 minutes. That was a record! Moorfields is usually so busy that on clinic days. I’m usually there for at least 2 hours and I’ve waited even longer to be seen at A&E. 

I met the consultant, he inspected both my eyes and told me there were two stitches needing removal. He was a little taken aback about my local anaesthetic allergy, but I assured him I was fine without anaesthetic. 15 minutes later everything was done, and we chatted for a few minutes more whilst the nurse went to pharmacy to collect my antibiotic eyedrops. I was on the way to the car within an hour of my arrival. 

As always, I’m so grateful for all the expertise of the consultants who do such amazing work.

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Medical, Throwback Thursday

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Corneal Rejection Update

I went back to Moorfields last Friday for my check-up. This was to find out if there had been any improvement in my graft or whether the rejection diagnosed four weeks previously had continued. When I saw the Registrar he confirmed what I had thought, there was no improvement and I would need to have a re-graft. My previous graft on that eye was 22 years ago, so I guess it’s done me well.

When the Consultant came to discuss the surgery with me, he explained that not only would he be giving me a new corneal graft but that he would also be removing the cataract which is also growing on my right eye. I didn’t realise that it was possible to do both procedures at the same time. He reassured me, but did remind me that the chances of graft rejection are higher when having a second graft. I completely forgot to ask if he will also implant a lens, but I’m due to see him a couple of weeks before the surgery, so I will remember to check with him then.

The surgery will not be until September. That was partly my decision, as my daughter was abroad when I had the partial re-graft on my left eye last year, and she very much wants to be with me because of the poor nursing care I had last time. She will not be home until next month and I also need the time to try and get my care package increased for my postoperative period. All of this is complicated by the fact that I will have to been in hospital overnight again as I will be having a general anaesthetic. I have previously had severe reactions to local anaesthetics.

I’m not worried about having a general anaesthetic, but am very concerned about my post-operative care, as last time nursing staff did not understand my need to use my wheelchair for all mobilisation, that my balance is poor and that I have restricted movement and poor grip in my left arm. So I need help transferring from bed to wheelchair and back again.

Because of my concerns, I spoke to Jasmine, the lovely Specialist Nurse at Moorfields and she has given me contact details for the Specialist Nurse at St George’s Hospital in Tooting, South London, where my operation will take place. This will enable me to talk through my needs and hopefully meet with ward staff so that they understand how I should be nursed. Even though my daughter will be at the hospital with me, I don’t want her to have to be battling with nursing staff to ensure I get appropriate care.

Following my partial re-graft surgery last year, my surgical care was excellent, but nursing staff had no idea how to care for someone using a wheelchair who also needed help with many activities. All of this was complicated by the fact that my operated left eye is the one in which I have most vision, so immediately post surgery I had very little vision, which the nurses failed to take into account when they wanted me to do things, such as going alone to a room at the end of the ward that I couldn’t see well enough to navigate to. Also, despite telling staff I was Jewish, the breakfast I was offered was a ham sandwich!! It seemed very difficult to provide me with anything more appropriate. My letter of complaint did not get a particularly re-assuring response, hence my apprehension.

But until I have my surgery, I will be enjoying the lovely summer weather and spending as much time as I can getting out and about.

I would also be interested in hearing from anyone who has had both a corneal graft and cataract removal at the same time.

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Medical

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Frustrating Friday

The Friday before last was a day of mixed fortunes, emotions and outcomes. Some of which I have no desire to ever experience again!

My day started with being woken up by the scaffolders finally removing the last remaining poles and planks from outside the front of my flat. Great I thought, as I had spoken to the contractors only two days before to ensure the rubbish that had accumulated on the scaffolding and which someone (probably my downstairs neighbour) had been throwing against my window for the last week or so just after the pubs closed, was also taken away. The contractors assured me that everything would be removed and the whole area brushed clean.

Once I had eaten my breakfast, I tried to speak to the scaffolders to remind them to clean up, but as none of them spoke English, I wasn’t sure I had been understood. That was soon proved correct. I had to leave to go for my Moorfields Eye Hospital appointment at 11.30am and I had difficultly walking the short distance from my door to the front gate, the path was littered with debris and junk, some of it had been put in a sack, but this was left on the ground with the rubbish falling out. I was not pleased! Before I started on my journey, I called the contractors and left an urgent message saying what had happened. It wasn’t just the inconvenience and danger of falling over, but I was tried and exhausted from having the stuff chucked at my windows, and scared that eventually one or more of my windows would be smashed.

I drove to the hospital, feeling very unsettled and apprehensive, I would be learning if any of the treatment I had started a week ago had reversed the rejection of my right corneal graft. Stressful enough, without having to deal with the incompetence of the scaffolders. When I arrived, no chance of parking in my usual space, the pub beside it had left out a large number of beer barrels and empty bottles in the parking bay. Definitely illegal, but it would take too long to contact the relevant council and get them moved so I had to find a space somewhere else. The only space I could find was going to be problematical, as I would not be able unload my chair onto the pavement and this meant I was going to have to ride on the road for some distance, not very safe. I parked up, leaving enough space behind me to unload my chair. I checked my mobile to see if the contractors had tried to call me, through having Bluetooth in my car, I should have been able to pick up the call. I found a very brief text message saying the contractors would come back on Monday. I was not happy, and felt I really couldn’t take any more of the disruption to my sleep, so somewhat distressed I called the Head Office for the contractors and made a formal complaint. I was appalled at being lied to and that they had no consideration for my safety, I expected to get a phone call, not a terse text. The woman I spoke to was very understanding, I explained how threatened I felt and she promised that she would get someone to contact me as soon as possible.

Whilst I was making my call, the car behind me drove away and I was just about to reverse my car into that space when a man driving a people carrier drove into the space and manoeuvred his car so that there was only about 9 inches between his car and mine, making it impossible for me to get my wheelchair out. There is a wheelchair sign and a notice asking people to give me room to unload my chair. But it’s surprising – or maybe not – how many people can’t read! I got out of my car and politely asked the man to move, his reply astonished me, he suggested I pulled out of the space, unload my wheelchair, leave it on the road and then park back in the space! I couldn’t believe what I was hearing! I explained that wasn’t a option, and thankfully he spotted another space further up the road and moved. Fortuitously the last car behind him also drove away a moment later and I was able to reverse to the end of the parking bays so no-one could park behind me! So having gained a great parking space I then unloaded my chair, but as I was doing so, the driver of the people carrier came up and started haranguing me. I couldn’t work out the logic of what he was trying to say, and quite frankly I couldn’t care! I just told him quite politely but firmly to go away, and thankfully he did.

I then had to navigate my way across a busy junction with lorries reversing in and out of a building site, quite scary, then drive up on a very narrow and extremely uneven pavement to get onto the wide pavement outside the hospital. I had to drive slowly and carefully as the pavement sloped a lot too, I was worried my chair would tip. I was partway along when a unmarked delivery van came up beside me, mounted the pavement and stopped. He must have been able to see me! I tried shouting, as he went to the back of his van to get out the parcel he was delivering saying I couldn’t get past. I think what he replied was; “tough”, though it may have been less polite. (Which was how I was feeling by now!) Really helpful idiot!

So I reversed along the pavement I’d just travelled, not easy to do, and had to drive down on the road, until I could reach safety. I was so relieved to get into the hospital, but also feeling very jittery. I was terrified as to what I would be going home to, I really felt I couldn’t face another night of aggro from things being thrown at my window, I was nervous as to what I would be told about my eye, after last year, I wanted a year free of surgery. But I had a strong suspicion that my eye wasn’t improving and I would need an operation before the year was out.

I got myself to the clinic and tried to concentrate on reading my Kindle whilst I was waiting for my vision check, but found myself getting even more unsettled. By this time it was almost an hour since my compliant to the contractors and I didn’t want to be taking a phone call from them when I was seeing my specialist. The Care Assistant doing my eye test then started checking the vision in the wrong eye! She hadn’t checked my notes properly and I had to explain what was happening. She then, for some reason unknown, asked where my partner was, Jan (my ex) had not been to the hospital with me for almost 2 years. Our relationship ended 22 months previously, and, that kindly meant enquiry hit a very raw nerve. I just burst into tears. The Care Assistant asked if I wanted to talk to someone, I just shook my head, saying I would go back to reading my Kindle. She disappeared off somewhere and 2 minutes later came back, started pushing my chair, saying she was taking me to talk to someone. My protests were ignored, and I found myself entering the office of the Clinical Nurse Specialist and Counsellor.

It was very strange for me to find myself talking to a younger version of my former professional self. Jasmine was kindness and professionalism personified. She listened to my tale of woe, understood why I was feeling so shaky, and gave me the space and time to get myself together again. I was extremely grateful for her availability and empathy. Whilst I was in with Jasmine, my phone beeped with a text, the contractors were on the way to my flat to clear up all of their rubbish. I was just so relieved. I felt safe again, which was definitely not how I was feeling before I got that message. It would have been nice to have an apology. But knowing the rubbish was being cleared was huge comfort.

It was then back to clinic and in to see the specialist and his team. The verdict was as I expected, my rejecting cornea was very waterlogged, I was to complete my oral steroids and to have stronger eye drops. I reminded the Registrar that I was allergic to preservative, he reassured me the drops he was prescribing would be ok, and that he was also giving me some more ointment for night time.

So, after booking another appointment for three weeks time, I sped off to pharmacy, anxious to get home. The drops were soon sorted, but there was a problem with the ointment, the pharmacist explained they had none available. I remembered from my emergency visit that the Doctor had prescribed an alternative if the one he wanted me to use wasn’t available, and expected the same thing to happen again, only to be told to get a script from my GP. Easier said than done, as it’s hard for me to get there alone because it’s so difficult to park nearby. But I realised I had to try as I would run out of the ointment really soon.

I managed to get to my GP about 20 minutes before they closed, I parked immediately outside in the Doctors own space so I could stagger in on crutches without getting my chair out. Painful (and risking a parking ticket) but necessary. I realised I wasn’t popular asking for a prescription so late in the day, but I explained the urgency and they promised to fax the prescription to the Chemist, whom I phoned as soon as I was home to tell them to expect it. The Pharmacist agreed to deliver it to me the next day.

I was pleased to be home, poured myself a large glass of wine, and begun the hourly regime of drops to my right eye. I noticed very quickly that the drops left a horrible taste in my mouth, and that they made my eye smart. But just thought; ‘Ok, I’ll just have to put up with this, if it helps get my eye better.’ But as the evening went on I began to feel very nauseous, and then started to vomit. By the time I settled down to sleep, I was glad to stop the eye drops and put the eye ointment in my eye instead. I was worried that the vomiting would disturb my sleep, but managed to drop off by about midnight and slept through till 8 the next morning.

But as soon as I started the drops the following morning my vomiting recommenced and continued until mid afternoon when I decided that the best thing I could do was stop the new drops and go back to the drops I had originally been prescribed at A&E.

The main reason for this was that on checking the drops carefully I discovered that they contained preservative to which I’m very allergic. My eye had become very red and painful, which I knew to be a reaction to preservative, as I’d had this before. I debated attending A&E, but didn’t feel safe to drive there and the thought of trying, via an out of hours GP service, to get a wheelchair accessible ambulance was too much to contemplate. I’ve had to do this during weekday surgery hours and the whole experience was so fraught with difficulties, I decided I was probably better off staying at home and trying to get rehydrated.

Gradually I began to keep clear fluids down, then a light meal. By the Sunday morning, I wasn’t at my best, but felt up to meeting a friend to a go and see a wonderful exhibition of Matisse cut-outs at Tate Modern. I was even more grateful for my wheelchair as I was very unsteady on my feet, much worse that I normally am. I had a lovely, but tiring time with my friend and managed to enjoy some rather good banana cake in the cafe. But I was very pleased to get home, and to lay down in bed.

On the Monday, I phoned the Chemist to find out when my new eye ointment was going it be delivered, as it hadn’t arrived on Saturday. I was staggered to be told the ointment wasn’t available due a manufacturing problem. Surely the Doctor who had prescribed this should have known? I wasn’t impressed. So I had to phone my GP surgery to get a further prescription for the ointment I’d originally been prescribed. Luckily the GP I spoke to was very helpful and gave me three weeks supply. This was eventually delivered to me on Tuesday afternoon, which was just in time as I’d finished the original tube.

I also phoned my Consultant at Moorfields, and left a message, explaining what had happened and asked for a call-back in case he wanted to prescribe some different drops. When his secretary called back two days later, she’d not managed to speak to the Consultant, but promised to do so that day and call me back if my drops were to be changed. I didn’t get another phone call, so have continued with my original drops and will be back at Moorfields in 10 days time. I will be making sure that I see my Consultant, not his registrar this time!

As a final swan-song from the scaffolders, their bosses turned up on my doorstep last Wednesday wanting me to sign their ‘Resident Satisfaction’ survey! I will leave you to guess my response!

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Everyday Life, Medical

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Right Corneal Graft Rejection

This last week last been been stressful and I’ve yet something else vision-wise to adjust to.

Last Sunday I noticed mistiness, pain and weeping in my right eye. Having had similar symptoms when the 25 year old corneal graft in my left eye began to reject and I needed a partial re-graft in May last year, I feared the same thing was happening again, but this time in my right eye, which had originally been grafted 22 years ago.

My vision in that eye has never been good. As a child I had a pellet flicked into to it from a catapult and that caused me some vision loss. Eighteen months ago I was assaulted by someone with mental health problems. She punched the right side of my face causing me to sustain a retinal bleed. Both of these things affected my distance vision considerably but I have retained some close vision.

I was anxious to get to Moorfields to get my eye examined. I desperately wanted to go early the following day, Monday. But I have been waiting for several months to have the gate to my balcony replaced and Monday was the day this was finally going to happen. This may seem like a insignificant thing, but my next post, ‘The Gate’ will explain why this was so important to me.

So it was very early on Tuesday morning that I left home, grateful that the glop problem I had experienced on my left lens had now been solved and I wouldn’t have to worry about not being able to wear my left lens all day.

I got to Moorfields just before 8am, and was just about to reverse into my favourite parking space when I very large lorry drove over the pavement and manoeuvred into the gap! I was not happy! I got out of the car, but not quickly enough to speak to lorry driver, who had, conveniently for him, disappeared. He was parked illegally, the bay was only able to be used by cars with residents permits or Blue Badge holders. So I had to find another space quickly as I wanted to get to the Emergency Department before the morning rush. The only space I could find had unmarked orange bollards at one end of it, not a valid way of preventing parking, but a ploy often used by builders who want a particular space. Unashamedly, I parked my car and moved the bollards, so I could get my wheelchair out.

Fortunately from this new space, I was able to get to the hospital without taking my wheelchair on the road, a very dangerous things to do, as I would be invisible to any lorry going in or out of the building site beside the hospital. I didn’t want to end up as a wheelchair casualty.

At the Emergency Department I was quickly seen by a Nurse, and then by the Doctor, he examined my eye thoroughly and then sent me for an ultrasound on my right eye. I’ve had ultrasounds done on other parts of my body, but this was a new experience.

It was painless and quite comfortable, just a light touch over my closed eye lid. Technology is so wonderful, from the optical ultrasound it was determined that I had no detached retina or retinal bleed. I was relieved, at least with a diagnosis of graft rejection, I knew what I was facing.

The Doctor instructed me to use Dexamethasone drops every half hour into my right eye, and use a steroid ointment at night. Then an appointment was made for me to see the Corneal Fellow two days later. 

All I had to do now was collect my medication, whilst waiting, the Moorefields Mascot paid a visit to pharamacy, encouraging patients to visit the research unit to see what when on there. Tempting though this was, I just wanted to get home.

Three hours after I arrived I was leaving Moorefields, excellent quick treatment, the NHS at its best.

The cone dumping builders were waiting for the space I had appropriated, but at least they weren’t abusive. I was just pleased to get back in my car and be able to drive home.

On Thursday, as I was waiting for my next appointment, Ken Pullum walked passed me, most surprised find me at the clinic, and no doubt relieved that it wasn’t him I’d come to see with yet another problem with my scleral lenses!

The Corneal Fellow, whom I had met briefly last year, decided to prescribe me systemic steroids, to see if that, combined with the topical steroid drops and ointment would reduce my swollen and waterlogged cornea. I was to take 50mg of Prednisolone for 3 days, 25mg for 3 days, 15mg for 3 days and finally 5mg for 3 days.

I was to return the following week to see my own consultant to discuss any future treatment and possible future surgery.

After all the difficulties caused by not being able to get my care hours increased following my surgery last year, I wanted to have a whole year without hospitalisation. It looks now as though this may not be possible.

My only consolation, is that at least if I do need surgery, the good vision I have in my left eye will enable me to be reasonably independent post-operatively.

My only worry is that my balance is very poor at the moment, I’m having at least one fall a day. I’m not sure if this is due to or exacerbated by my loss of vision in my right eye. Part of the reason I know is the unsuitability of this flat, the lack of space I have and not being able to use my wheelchair inside the flat. Carrying trays from kitchen to living room or drinks to my bedroom is hazardous, and would be so much safer if I could use a trolley or my wheelchair.

So amidst having to prepare for probable future surgery I must increase my efforts to move from this flat, it is becoming a more dangerous place for me to be, and moving needs to happen soon, for both my safety and sanity.

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Everyday Life, Medical

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Visual Update

No, this is not a software update as so many of us have been doing on our iPhones & iPads, but continuing the tale of my vision following my partial corneal transplant. Sadly, and somewhat infuriatingly, I’m still not able to wear my new lens for longer than about 4 hours. This greatly restricts what I can do in a day, I have to decide if I wear my lens for dealing with the pile of snail mail that comes through my letter box or have the luxury of being able to see some television of an evening. On a day when I have a hospital appointment, my wearing time is used to give me in the independence to drive myself.

My experiences of using hospital transport which can take 8 hours to get me to and fro a half hour appointment, causing me to miss meals and care visits, and on one occasion damage to my wheelchair, has meant that if I can drive myself I will. On my visit back to Ken Pullum at Moorfields Eye Hospital when I explained about the discomfort I was having Ken re-examined my eye and felt the discomfort was caused because the lens was not fitting snugly enough (due to the steepness of my eye profile caused by keratoconus) and I was loosing much of the fluid which I have to fill the lens with before insertion. Ken therefore decided that I needed to be fitted with a custom made lens. This is made by opening my eyelids very wide and putting an eye shaped cup attached to a hollow tube in my eye and injecting a blue goo-like substance into the tube until it fills the cup and makes an impression of the surface of my eye. It didn’t hurt, but was just rather uncomfortable for a time. However the equipment did remind me of the kit I’ve used to fill holes in walls before painting!

I returned to Moorfields last week for a fitting. The new lens is quite a different shape from my ‘off the shelf’ lens and looked somewhat bigger. I was worried about how I would tolerate it, but managed keep the new lens in for about two hours with very little discomfort. Ken was happy with the fit so the next stage was refraction. This is needed to ensure I would have good enough vision to be able to drive. I have decided that I want to be able to use it for distance ie driving and watching TV. At the moment I’m having to wear glasses on top of my lenses to be able to drive. As I spend quite a bit of my time using my iPad when watching/listening to TV I’m finding that having to peer over my glasses to see TV properly doesn’t really work and that I’d rather have half moon reading glasses. Also because my eyes are very sensitive to sunlight on sunny days when I’m driving or outdoors I have to wear over-glasses to reduce the glare. These are rather cumbersome and don’t fit easily over my distance glasses. It will be rather good to be able to wear fashion sunglasses after so many years!

So I now have wait several weeks to get my lens back, then hopefully more freedom.

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Medical

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Freedom again, even if limited

For the last 3 months I have been unable to drive my Motability car. One Wednesday in March I began to have some very blurred vision in my left eye. Having had a corneal graft in that eye 20 years ago for Keratoconus I went straight back to my optician who told me to go to Moorfields Eye Hospital casualty immediately.

That proved easier said than done, as I had to get my GP surgery to organise transport, because I could not see well enough to drive. The receptionist I first spoke to said she could not do this and it was only when I spoke to my excellent GP and the practice manager that everything got sorted out. The ambulance arrived quickly, and then I hit another snag, they couldn’t fit my wheelchair into the ambulance without folding it up. That meant taking out the batteries, which the paramedics were not supposed to do. Eventually they did agree and I was soon on my way across London, feeling very scared and anxious.

On arrival at Moorfields I was seen very swiftly by the triage nurse, and soon after was taken through to see the doctor. After examining my eye thoroughly and taking a full history from me he said I would need to come back in two days time to see a Consultant. Eventually transport was sorted out to take me home and to come back again on the Friday. The kind nursing staff even found me a bed to lay down on whilst I was waiting. I eventually got home at 2am! I was tired, exhausted and in a lot of pain. Sitting in a wheelchair for over 6 hours doesn’t help with back and neck pain!

Now I had lost my independence. I could not see well enough out of my right eye to drive. I was reliant on help from carers and friends. The only time I could leave my flat was for hospital visits.

When I went back to Moorfields I saw a wonderful consultant, Mr Bruce Allan MD FRCS who explained that the corneal graft I had 20 years ago had partially rejected and my eye was leaking fluid. I was prescribed steroid eye drops and antibiotic eye drops to take and an appointment was made for the following week for me to return.

After two more visits it was decided that the drops weren’t working sufficiently and my graft was still at risk so I would need surgery. I was half prepared for this, but was surprised to discover that I would be unable to have my op at Moorfields as they no longer do general anaesthetics there, only day surgery under local anaesthetic. Unfortunately I am severely allergic to local anaesthetics so that was not an option for me

I was to be transferred to another consultant Mr Romesh Angunawela BM, MD, FRCOphth, FRCSEd, who proved to be as superb as his colleague. He operates at a South London hospital where It would be possible for me to stay overnight. This was all arranged quickly and professionally, with the consultant himself phoning me to explain what would be happening. I was much reassured by that, even though I wasn’t looking forward to going into hospital.

My operation was going to to be a complex one, but I had very good and thorough pre-op assessments by both the nurse on the ward and the Consultant Anaesthetist.

My stay was rather mixed, I had excellent medical care and the surgery went well, but my nursing care left a great deal to be desired! A topic for a separate blog.

Once home it was a case of regular eye drops and being patient. Not easy for me, who is always keen to be out going to a gallery or exhibition or off to visit friends. I also regularly see my cousin in North London to whom I’m very close. Despite being from different generations, we share many views and attitudes and have some surprisingly similar life experiences. She also now relies on me for emotional support and I love talking with her and helping to make her life better. From seeing her at least once and sometimes twice a week to only having phone contact has been hard for both of us.

After 8 weeks of hospital visits I was beginning to struggle with not being able to do the things I take for granted. My iPad and iPhone have become even more important to me but what I missed most was the freedom of being able to drive. It was hard to find people who I could put on my car insurance. Motability has a rule that secondary drivers must live within 12 miles of me to be eligible. As most of my London friends don’t drive, this was a real problem, as anyone outside that limit could only drive for 30 days.

I had one person who was willing to drive for me, but I would need to cover her travel expenses and pay for her time, I was happy to do this, but Social Services made it clear that they would not automatically increase my care hours to cover this. I was also warned that if I did ask for my hours to be re-assessed I was in danger of them being reduced not increased. With my current care hours being insufficient for my needs this was a risk I was unwilling to take. So I lost the services of that person as she could not afford to work for me for free. I really understood, she had financial commitments that meant she had to earn money, I just wished I could have had even temporary extra hours to employ her.

Explaining this to my consultant one Friday afternoon he suggested that I be fitted with scleral contact lenses. These would help to promote healing in my eye, as this had been slower than expected, and give me enough vision to be able to drive.

I’d never heard of these lenses, and once home, avidly searched the net for information. I saw one of the contact lenses fitters that same afternoon, and as they had difficulty getting the right lens to fit me, I was asked to come back the following Monday to been seen by Mr Ken Pullum BSc FCOptom DCLP, a highly experienced fitter specialising in scleral lenses.

Scleral contact lens

A scleral contact lens with the smaller corneal lens to show size comparison

Ken could not have been kinder more patient or more helpful. After trying many different lenses he eventually found one that was a perfect fit and once he added the extra lens power, managed to give me excellent vision. Now it was a case of waiting for then to be made.

Some three weeks later I was back in the clinic, yes they were a great fit, but the vision wasn’t quite right. But, it was possible to adjust the visual acuity of the lens, how I’m not sure, so another weeks wait. So near and yet so far…………

Back again, the lenses was better, but my vision not as sharp as I needed it to be for distance, great for reading or computer though. So Ken came up with the idea of getting the spectacles department to make up a pair of glasses to wear on top of my lenses.

I so hoped that would not take long. And indeed it didn’t, a hour later I had my glasses. With my son-in-law by my side (he had kindly got up before 6am and travelled across town to drive me to my appointment) I set off to drive to my cousin who was eagerly awaiting my visit.

It was so good to drive again! Unlike many people, I quite enjoy driving through London, I’ve done so for years because of work, and am used to negotiating the busy traffic and sometimes crazy cyclists. My biggest fear is hitting one of them. I really think they should either have to pass a test, like the rest of us or be licensed. I don’t think London roads are designed to be able to sensibly separate cycles and other road users.

My lenses are taking time to get used to and I can only wear them for a few hours before they get cloudy and need to be cleaned. Not uncommon from info on the net. I also discovered that I was allergic to one of the saline liquids needed to put in the lenses before insertion to keep the eye moist. It contained a preservative, and that meant I needed to use a another solution, but thankfully I had been given a different one, Quattro, which seems to work well.

Yesterday it was great to be able to drive myself to get a much needed hair cut and some basic shopping, Not a big deal for most people, but it has meant the beginning of freedom again for me.

I am profoundly grateful for the professional skills and expertise of Mr Bruce Allan and Mr Romesh Angunawela, also the knowledge and kindness of Mr Ken Pullum. You have all contributed to giving me my independence and my life back.

All I need to do now is slowly increase my wearing time to get several consecutive hours wear from my lenses so I can get out and about for longer.

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