UK Keratoconus Self-Help and Support Association

Morning All,

I havent posted for a while and will attempt to update you on my KC situation since my last post following the displacment of the lower intac.
I spent most of Jan to April housebound in dark glasses due to the sensitivity to daylight etc.

At my appointment with the consultant in sheffield ( 2nd opinion...as recommended by my consultant in Sunderland) at the end March it was discovered that he lower intac had extruded the surface and hence had to be removed. We discussed what if any other options were available to me. He said that I should not have any more intacs inserted and would recommend a graft.

A few days later the lower intact was removed by my consultant in Sunderland. The sensitivity reduced and over the past few months the vision has stabilised and slightly improved but still poor night vision, halos, ghosting and not able to drive. Sometimes sensitive to sunlight and the usual tired eye and headaches. Its not safe for me to cross the road in darkness and have to rely on others.

I decided that if I wanted to improve my vision and quality of life etc then a graft is the only option for me. My graft will take place 30th October. Althoguh I am excited the enormity of it all is beginning to kick in. I know I am in very safe hands and have no reason to blame my consultant for the intacs not working out....he has done so much more for me than my old hospital ever did...but I am worried that I have never been a "text" book case and that the graft is somehow going to be problematic too!

I am interested to know from those of you who have had a graft.....what was your recovery period.....when could you increase your activity levels??

I am so keen to get fit again....mountain biking, in the gym etc and having the freedom to go places, do things and visit people any time of the day or night...not relying on the very poor public transport service and having to plan to be home before darkness falls or arrange for someone to meet me to bring me home...even in the summer the bus service stops at 5.50.

My partner has just told me (cos he cant keep surprises and also that my date for graft is confirmed) that he has booked a session at the Turkish Baths in Harrogate at xmas time,. It will be 8 weeks after my op. Should i be ok to go??

Bye for now
ali

Hi Alison

Sorry to read that things didn't work out with the Intacs. At least you had the opportunity to give them a trial. It can, in some ways, make the decision to have a graft easier because you know you've tried pretty much everything.

First off, there's no such thing as a "typical graft". Well, perhaps there is for the odd lucky person but it's not often observed ! By which I mean, all of us who end up needing a graft enter the procedure with out own unique history and sets of circumstances. Nothing -- very thin corneas, hydrops, early onset of Keratoconus etc. etc. -- has a huge implication for a successful outcome one way or the other. So you've just a good a chance as anyone of getting a good result. Please don't worry therefore that you're somehow set up for failure. That's simply not the case. But of course, worry is part of the deal with a graft so maybe you have to feel the feelings and carry on as best you can. I'm wishing you the all the luck in the world, if that helps.



As for the Turkish Baths at Harrogate, 8 weeks post-operatively you'll be fine. I might suggest you don't go for any of the "immersive" options, just the steam rooms and treatments. Try not to get any water in your eyes if you can -- it shouldn't be too hard so long as you don't splash around too much ! And the steam environment is very hygienic so it's a very safe situation. I'm so jealous ! If your partner can have his arm twisted some more (just lay it on with a trowel how awful it all has been and that will get the wallet opening maybe) how about rounding it off with a trip to the marvellous Betty's Tea Rooms ?

Let us know how you get on or if you get any other questions.

Best wishes

Chris

Hi Chris,
Thanks for your thoughts and good wishes, very much appreciated.
You are right of course, nothing is typical in KC world! I have to take every day as it comes and deal with it as best I can. My consultant is fab and I know I am in safe hands.

I thought 8 weeks post op would be fine, glad to hear someone else agrees. We went one day over the summer and it was lovely. Yes, a trip to Bettys, what a good idea! I had forgotten all about that as an option, mind you I will have to save some room to enjoy it, with it being xmas time one may have to remember not to indulge too much on the days previous! It may have to be my treat as apparently I am staying overnight the night before in a really nice hotel, after a bit of retail therapy of course!

I will let you know my progress. I must remember to post more often!!

Thanks for your kind words.

Kind regards

Alison

p.s when was your graft??

Just to add my best wishes for 30th and to second Chris's suggestion of an indulgent time at Betty's Tea Rooms (after which you will need to get your activity levels up)!
The main thing the medics tell you to avoid in the months post graft is lifting anything heavy (presumably because it would put strain on the stitches?) But other exercise should be fine within a month or two of the graft. Of course I'm sure you know from reading all the posts here that the time it takes to see any improvement in vision varies a lot from one person to another. Some see a difference within a few months, for others it may not be until they can wear a contact lens again in the grafted eye that they get any benefit (having had grafts in both eyes, I've experienced both those scenarios which just goes to prove that every eye is different!)
I'm sure you'll let us know how you get. And enjoy lots of TLC in the first few weeks after the op.
Anne

Thanks Anne,

Yep, we all seem to have different results etc. I just got to take each day as it comes.

Will sure let you know how things go.

Regards

Alison

Good luck for tomorrow Alison!