I need help. post transplants"

[rersland]

Hi
Im new in here but been dealing with KC for over 12 years. Had transplants like 4 and 5 years ago. The operations have made a huge differance overall without a doubt. I can do things now that I couldn't before. Movies, drive at night, and just a much better quality of life.

Thats the good, I still am not anywhere close to normal with my eyes. I get great vision from my contacts and very little discomfort compared to before, but my eyes still cause me problems. I can't make good eye contact, my eyes cant take sunlight, and of course any outdoor wind is terrible.

What can I do post grafts to make my eyes closer to normal. I surely cant complain cause I am much better but this still is with me since I cant look a person in the eyes and be confident because of irritation. Any help will be apprecatited. Ryan

[rersland]

I was diagnosed with testicular cancer in oct. 2004. Been through 4 operations and 9 weeks of chemo and AM A SURVIVOR.

At 30, I've had way too many health issues but still live a good life. I've never missed any school or work due to KC or tc besides a day or two from surgery.

I've beat cancer over a year ago and am grateful, but I still have issues with my eyes post transplants 4 plus years ago.

I want to know what I can do to make my eyes "normal" post grafts. I wear gp lenses still and still have difficulty in light and focusing on still objects. It just isn't a normal feeling focusing on anything. Eyecontact isnt an option as my eyes cant take the pressure of it. Looking up is not an option even in the best conditions. Straight forward or down and its ok. Anyone that can help or been there let me know. Thanks. Ryan

[GarethB]

Hi Ryan,

Sorry to hear about the health issues.

On the KC front, what you describe is relatively common!

I think from the KC AGM it was mentioned by the guest speaker about a third of grafts need correction using contacts, I fall into this catagory. Light is an issue for me too but oly with contacts and many of us have a range of sunglasses of different tints to see normally.

Depending on the light condistions I too can find eye contact hard, as sometimes people just appear as a shape or a negative phot image!

At work I make eye contact but only briefly, to be honest very few people make permanent eye contact duringa conversation as they look at other parts of the face to pick up the full facial expressions. If the light is wrong/uncomfrtable, I just ask people if they mind moving round slightly. They all know about my KC.

My work environment has changed so nearer natural light so artificial light is less harch, changed pc monitor colours and brightness, further from the aircon duct etc and now the only thing I am unable to do is motorsport beacuse of the RGP lenses. Soft and I would be OK!

Hope this helps.

Gareth

(PS I am 18 years post graft, but only had to resort to lenses in the past 2 years after a long stint of glasses wear)

[Alison Fisher]

Hi Ryan

Most of those things happen to me, but to a far lesser degree. Having KC and being post graft for so long means I no longer have a clear idea of what a non-KCer would consider normal sight. I've read about a lot of things on here that I experience but hadn't necessarily put down to my KC. For example when I'm face to face with people I'm quite shy and so put the difficulty making eye contact down to a 'me' thing rather than a KC thing.

For myself the key to keeping my eyes comfortable is to be able to control the levels, and types, of light reaching my eyes. I wear glasses so have photochromic lenses in my main pair, but I've found the biggest help to be a hat with the brim down low over my eyes. I never go out without one.

I'm okay in the wind, but that said wouldn't be too keen without my glasses to shield my eyes a little. As long as I know I'm not going be increasing the amount of light to an uncomfortable level I'm also okay looking up so I can't really offer any tips there. The worst thing for me I think is going from one type of light to another - for instance if I go from daylight into an artificially lit building it can take ages for my eyes to settle down.

[Andrew MacLean]

Ryan

I don't really have anything to add to what has been said, but I do want to add my best wishes to those offered.

I wish you well both with your adjustment post graft to your new visual environment, whether this means further surger, contact lenses or glasses.

I wish you well with your post chemo rehab.

Stay in touch

Andrew

[Barney]

Gareth and Alison, is the photophobia you suffer related to the grafts?

[Alison Fisher]

I've had these grafts for so long that's a hard question to answer. Digging deep in my memories I'd say that I was sensitive to light levels before my grafts but even more so afterwards. Then and now the whole family automatically walk down the shady side of a street to keep me out of the sun. Pre-graft I rarely went out without my sunglasses - rain or shine, which got me some funny reactions sometimes but hey. Back then I was trying to protect my eyes from the wind as well as with my rpg's any movement of air across my eyes made them very sore. My hat wearing and actively avoiding fluorescent and halogen lighting has started since my grafts.

Does that help? Or perhaps more importantly make sense?

[Barney]

Certainly makes sense and I feel for you.

Before my graft I did the hat and shades thing and felt like the local wierdo. Driving in summer on motorways I had the visor down and wore one pair of shades over another. I couldn't read from white paper outside and in sunshine could only open one eye or it felt like my eyes were being gouged out. Couldn't go on beaches due to the reflection from the sand. It was the sum of the light entering both eyes that caused the pain. I assumed it was all down to scarring.

After the graft 10 years ago the problem completely went in that eye but gradually got a little worse in the other eye. That was dealt with using a laser to remove the outermost layer of the cornea. (They had a shiny new machine they wanted to try out.) Now I don't have any problem with light.

Has the reason ever been explained why you still have a problem post grafts?

[Alison Fisher]

Ooh that's interesting. I was told last year that I have a small ridge of scar tissue on my second graft and that's the eye that's most sensitive. I should have asked 'Dr Talkative' about it today shouldn't I? (I wish we'd had this conversation yesterday.) The thing is though I've been like it for so long it's normal to me, and when I have mentioned it to doctors in the past they haven't been interested.

[Barney]

I assume that's along the line of the graft? If it's on the surface then there's certainly possibilities. The laser treatment I had took 15 minutes or so under local with nothing worse than the smell of burning. The treated eye has severe KC so the depth they could remove was limited but seemed to do the trick.