UK Keratoconus Self-Help and Support Association

Hi,
Well it's now just over 2 months since Charlotte's acute hydrops (lefty) and from my prev posts some will know her and that the "cloud" began to clear dramatically quickly at the 6 week point. As said earlier there is a visible opaque vertical scar centrally and only a very tiny bit of cloud left and still fading. We know the scar is there for keeps. Cone in profile is amazingly reduced which is fab really as pre hydrops it was extremely "pointy", almost like a pregnant tummy at 9 months gone!!
Consultant has said there is very little point in trying to fit the LE with any type of lens now (GP or softs). Is that because the scar would be in the way then? I will ask him nx visit end of May. Suffice to say Char is on the list for graft. That will be a last resort tho. Given that she has Down's syndrome and Learning Difficulties she does not need to drive a vehicle or operate a computer for employment. We are being "led" by Charlotte as an individual in her own right (she will be 21 this year) and are confident that she will continue to carry on with her day to day routine and activities without becoming insular and frustrated by her visual impairment. To date she is neither although I do notice that she is watching her footing on certain areas when she is out and about. She doesn't walk about with her head down though and neither does she try to hold on to us so I think she is seeing where she's going and what she's doing just fine. Both my husband and myself are totally pro-active in seeking the best advice/treatment for Char as we have to be given that she doesn't understand the confusing "big words" and all the jargon the clinics use. She is obviously aware that she has KC, she understands more than the optoms realise actually but she gets bored with it all to be honest, and I don't blame her. So it's got to be down to me and Chris to work through all the options and hope that we are doing the right thing for her. For her to go through the surgery of an op et al could totally alter her perspective on this whole thing, for the past 3 and half years she's put up with RGPs and hated them but trusted me and her Dad. Surgery is without doubt a big step for anyone to take but for a young woman like Char it's more than a jump into the unknown and I don't have all the answers for her this time which bothers me greatly. I have to maintain that trust in order for her to believe that I can help her and to make her life ok for her.
Our main priority now is finding some aid for her right eye as that is her main eye now albeit KC but presently "stable". Consultant indicates it is past the stage for considering CXL though. Appt with Optom mid May to discuss how to give Char better vision, she said she "will not wear ANY hard contact lenses, she hates them and they bother her a lot!" Got to respect that, she was very definate about it. Appt with Consultant towards the end of May.
Will keep you posted as we appreciate any comments/suggestions/advice you care to offer.

Hi Angie

Glad things are (another pun not intended but the phrase fits !) looking up for Char. At least, in so far as Char can cope pretty well and seems happy post-hydrops. I guess you and Chris know best of all that, if you had to score on a quality-of-life spectrum, where Char would be and it sounds like that's getting back to how it was before.

Turning to the "what about the graft?" question, I'd give the same advice for you as parents and Char herself as I'd give for anyone. Which is: you have to be absolutely, 100%, completely and totally sure that it's the best thing to do before opting for a graft. Once you've made a decision to have a graft, then commit to it fully. But you can't do that unless you're certain in your own minds there's nothing by way of alternatives. The thing about a graft is, there is (here's another unintended pun) no looking back. Lenses -- even uncomfortable RGPs -- Intacs, intraocular lenses etc. can all be removed if needed. You can never simply "go back to how it was before" after a graft. You've got to move forward with whatever the outcome you end up with, good or bad.

I spent well over a year basically (I'm happy to 'fess up to this) flip-flopping about whether or not to have a graft. And I'm usually very decisive. That's understandable I think because those of us with Keratoconus almost inevitably have "good eye days" and "bad eye days". You have to I think watch yourself over a period of time to really understand whether the bad eye days genuinely do outnumber the good eye days in sufficient quantity that you get to that point where you're just fed up of having to do the monitoring. You know that however bad the outcome, it's not any worse than what you're living with. It appears that Char is so set against RGPs, if that continues, it will limit her quality of vision -- ultimately, that might force the issue if Char starts to need better visual acuity to do the things she enjoys doing. If I remember correctly you're investigating soft lenses, so it might be that Char achieves the excellent comfort and good vision that many with Keratoconus can get with that lens type... see what I mean... there are a lot of moving parts in this decision and it can take a while to go through everything !

So, give yourselves and Char a bit of time and space and take each day as it comes. Don't drift, of course, put some notes in your diary or on the calendar every few weeks or every couple of months to take stock of how things are for you all. Come to a decision together, gradually, over time.

If I had a magic wand, I'd wave it and it would all be a lot easier for you, (well, after I'd magic'ed up some nice cars and a holiday for myself maybe ) but absent that, hope what I've said helps a bit.

Best wishes

Chris

thank you Chris. that is a big help. sometimes it does good to get another kind of perspective on these things. that was a good idea to monitor and keep a recky of good eye/bad eye days too. so thank you again for that. we really do appreciate you taking the time to post. Charlotte is a very feisty young lady with such a zest for life. it takes a lot to bring her down and so far she's as chirpy as ever.

If the cone is much reduced I don't understand why a lens fitting couldn't be tried, especially a soft lens?

The cloud is still present slightly but would this cause Charlotte a big problem? As yuo say she doesn't need to drive a car, operate heavy machinery and a computer isn't necesary for work, so the question I would put to the consultant would be 'Let's try a lens anyway as we have nothing to loose by it to see what vision we get and let Charlotte decide if the vision is OK?'

She had made a remarkable recovery and the cionsultant did say it was the worse case of hydrops he had seen, so it could also be the best healing he has seen?

Thanks Gareth, yes my thoughts exactly re the softs. I had all these thoughts after the appt and then kicked myself for not querying at the time but I was concentrating on Charlotte at the time I'm normally more "on the ball" but prob was still reeling from the events of the past few weeks and then the joy at the dramatic clearing! Back nx month and I'm ready with my questions I think they all expect me to ask loads of questions actually as I usually do, I've even been known to have a typed list that I've prepared in case I forget anything!