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Posts tagged ‘Keratoconus’

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.

Wearing Scleral Lenses for Longer

I’ve had my new scleral contact lens for over 6 months now, and whilst I’m pleased they give me really good vision, I’m still trying to find ways of being able to wear them for longer each day. My current wearing time is now up to about 10hrs a day, but some days it’s only 8 and only very occasionally I can manage 12hrs.

Obviously this restricts my activities to some extent, the most difficult thing is travelling when I’m driving to see my cousins the other side of London. I need to time my stay with them to make sure I get home before my lenses start to cloud over or become very uncomfortable. Not always an easy task, as my journey times to and fro can take from 75ms to 150mins! Such are the variations in the traffic and the roadworks that continue to plague the London driver.

I’ve been experimenting with different solutions, my choice is limited to those without preservatives, as I’m allergic to them. I settled on Lens Plus but still had discomfort after a few hours. My consultant suggested using HyloForte to help with dry eye, but it seems to cause cloudiness. So, I started looking for other solutions. I came across Hylo-Care, which is designed for both dry eye and where there has been recent surgery or damage to the outer layer of the cornea.

I’ve been using this for over a month now and it really has helped to increase my wearing time, previously I was only getting 4-6 hours, this has now doubled. I don’t think it’s just due to increased tolerance, but purely to the drops, as when I had a problem getting the Hylo-Care prescribed and I had to revert to using the Lens Plus on its own, my tolerance level reduced.



Once I’ve cleaned my lenses I use approximately 15 drops of Hylo-Care in my larger, specially moulded scleral lens, topping up with Lens Plus. I then use approximately 10 drops in my smaller, conventionally shaped scleral lens before the top up of Lens Plus. I believe this mix of solutions is working well for me, and whilst it may not work for everyone I wanted to share my success in the hope that it may help some people. Not all ophthalmic practitioners seem to have heard of Hylo-Care and at my last hospital appointment the Registrar hadn’t come across it before.

Whilst Hylo-Care is available on prescription in the UK, I don’t know what the availability is in other countries.

One other problem I have had with wearing my scleral lenses is when my eyes do get dry, the area directly around my eye gets red and sore. I’ve been trying to find a reasonably priced eye gel that will help. I’m a great Body Shop fan and decided to try Aloe Eye Defence. The label says it’s ok to use with contact lenses, but like any skin product if you put it near your eye when you’re wearing scleral lenses you are almost guaranteed to have smearing & will need to clean your lenses and re-insert them! I somehow manage to do this at least once or twice a week!

Body Shop Aloe Eye Defence

Body Shop Aloe Eye Defence

So, I just use the Aloe Eye Defence first thing in the morning, about 3 hours before putting in my lenses and then at night before going to sleep. It certainly has helped to make the skin around my eyes less red. At £10 each bottle, Aloe Eye Defence is nowhere near as expensive as many similar cosmetic products either, so worth a try.

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.

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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