UK Keratoconus Self-Help and Support Association

I thought I ought to add a note after spending so long reading about other members experiences over the past months.

I am 28 (soon to be 29) and started have issues with my sight at 22 subsequently I was diagnosed with Kerotaconus in 2003. Although at the time this was not followed up by NHS Trust as my file was lost due to admin error ! However I got on with life and was at the time communting between London and Brussels, therefore instead of waiting for the NHS I sort a local practioner in the UK for hard lenses.

Each time I went for a check up I was told that there was increased scarring on my left eye. But both eyes where tolerable to hard contact lenses and I continued. Th previso was that in general due to a busy life I wore them for long hours and would often have very sore eyes and where the lenses were often inflamed.

In 2005 I gave up work to travel and climb in the Himalayas. After a while when traveling I noticed that my right eye would blind now and again. I took all practical measures possible such as sun glasses etc. But mositure kept coming through on to the eye.

In addition my left eye would increasing becoming very sore and unable to cope with a contact lens.

In 2006 I was told a NZ doctor that I needed a graft on my left eye as nothing more could be done. So I headed home that summer. Up until then I had done everything I could to get on with life and not let KC limit me in career or lifestyle. I stilled climbed, travelled, partied etc.

However my eyes had become relentlessly sore like I had been swimming in a choriniated swimming pool for many hours. I was increasingly photosensitive and it started to hurt to see. But like so many here the key message has been to get on with life and stay positive so I did and have.

But my bankrupted NHS trust has been anything but helpful or positive. I eventually saw Mr Daya (who I am sure some of you will know) in August. By which time I was unable to wear any lens in my left eye, the effect to which makes me very tired esp. when sitting in front of a computer.

My right eye now suffers from regular bouts of hydrops and I am told also needs a graft. Some of these bouts have been unbelievebly painful and have lasted days - last one took a week before I could use my only contact !

Since my return from my travels I started work for a city PR firm but I have had to stop because the severality of the hydrops has meant that I have had to have a lot of time off coupled with poorer and poorer vision and increased tiredness meant that I was making far too many mistakes. So am presently climbing and sleeping which ain't bad but not quite what I would like to do with my time !

My operation had been postpone but due to the latest bout of hydrops last week I am due for a graft on the 28th of this month.

Bizzarely I am not concern at present with the op (I am sure with will change on the day) and am of the opinion that I just wanna get on with things, the sooner I have the op the sooner I can get on with recovery.

Reading the experiences from members on this forum has been a great help and I would like to add my thanks. The honest postings brimming with positive sentiment have been very helpful.

Two q's though for those you that have managed to perserve with this blog thus far.

What is the general experience with the recovery of a graft ? I know a year is the estabilished line but how soon after the op do people return to work etc.

How long is the time between a grafts on eyes ?

Mark

All the best with your birthday when it comes, and welcome to the forum.

You have obviously managed to live life to the full with your Keratoconus, and it may be that the time has come now for your first graft. I had my grafts about 3 years apart.

For many ophthalmologists a singl episode of Hydrops is an indicator for an early graft.

I guess that following hydrops you are probably listed for a PK?

My own recovery from PK was that I was back at work after six weeks. I did not have any time off following my DALK and my subsequent cataract operation also involved no time off work.

I have never really been much of a climber, but I did go fell running at one time (always without my lenses), and I continued to skydive (although with lenses in, and goggles to protect my eyes from the rushing wind and help keep lenses in place).

All the best

Andrew

Hi Mark and welcome! Your story is a wonderful example of how to live life to the full despite KC. I'm full of admiration! And all the very best with your graft this month. I had grafts in both eyes, two years apart around 20 yrs ago. I took 3 wks off work each time though in hindsight I might have done better to take a bit longer, especially after the first one. The year you've been quoted is the time it could take to have useful vision out of the grafted eye (though with my second graft I was seeing much better within a few months, so it does vary). So you could be dependent on your other eye for quite a while which you're probably used to anyway, but that does mean that any more hydrops episodes would be a real pain (both physically and metaphorically!) So here's wishing you all the best, and a hydrops free year!
Anne

Mark

Welcome to the board and a very good read of your journey so far....


What is the general experience with the recovery of a graft ?

Varies. Some can see in as little as 3 months, others 18 months. Guess it boils down to how well you heal and how well the surface adheres and adopts through recovery


I know a year is the estabilished line but how soon after the op do people return to work etc.

Again, pretty individual. I went back to work in the 2nd week....but was working from home few days after the op to be honest.

How long is the time between a grafts on eyes

Ive left it 2 years. I have mine scheduled very shortly, and whilst I was told to wait minimum a year, S Daya's take on it was to get the grafted eye stable to a point where you can see and rely on it, and then do the other one.

Hope that helps

J

Many thanks for the comments

re recovery many thanks on the guidance - as am unemployed am waiting for op then will start looking for work. It will mean probable career change as my desire to be living abroad. In light of my sight and treatment, extensive time away is not compatable with NHS procedure ! But I would be interested if any of your members while being UK passport holders reside in other EU countries for extensive periods are they still eligable for NHS treatment - my guess is unless they are UK taxpayers probably not ?

a couple of q's Andrew regarding archornims

was is a

DALK ? and a PK ?

Re graft. Mr Khan (Mr D's Registar at Queen Vic. in East Grindsted and by all accounts a throughly decent human being) suggested that both eyes are now equally as bad though I can tolerate a contact in my right for a few hours at a time. However due to the hydrops etc. they are not sure which lens will operated on first but in both cases I am told a partial graft is intended - Is this a PK ?

I am suprised to read that cataracts can be a issue - I apprecaite that each person has individual rates of recovery/set backs but is this a common phonmenon ?

Sorry Mark

PK stands for Penetrating Keratoplasty. The full thickness of the patient's cornea is removed and replacement tissue from a donor is sewn into place.

DALK stands for Deep, Anterior Lamellar Keratoplast. Layers of the patient's cornea are removed, but the rear membrane of the cornea (called the endothelium) is left in place and a donor cornea, that has had the endothelium removed, is sewn onto the top of the patients's own tissue.

As to Cataracts, there are several different sorts of these. I had a Posterior Subcapsular Cataract. This was easily fixed with routine cataract surgery. I am extyremely old, and it may be that I'd have been developing cataracts without any intervention or trauma to my eye.

I was told going into surgery that a cataract was a possible, if unlikely outcome. I guess I just happened to be the unfortunate one!

Andrew