Acute Corneal Hydrops x 3 - graft the next option ......

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Susan Mason
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Acute Corneal Hydrops x 3 - graft the next option ......

Postby Susan Mason » Fri 08 Apr 2011 10:13 pm

.... oh dear where to start and what to say. It's been so long and in some ways I feel guilty for having been away and not having looked as often as I once used to. However, the last few years have been rather tough and it now, once again all seems to have come to a turning point and not sure I have any options left anymore :-(

I had got used to the idea of never driving, scleral lens wear was difficult and my life was limited in many ways however, I tried to make the most of it. And then it struck the hydrops in the left eye lasted several months and just when it was confirmed I could start to wear the scleral again the hydrops was back however, more severe (just my luck). Several months passed and I tried to get on as best I could with just the one lens and then one morning a work a little fuzzy patch, muck I thought best go and rinse the lens off/clean it. To no avail and the patch/mucky spot got bigger and bigger until an hour or so later in the nearest eye unit it was confirmed as hydrops and now I had no eyes working!
The day after I saw my own consultant and he again confirmed the hydrops. I then went almost 12 months with no lenses, went to work did my best was honest with them and now wonder was this my wisest choice?????
Anyway back to the consultant and the optom saw them both in Nov/Dec and it was decided I could wear the scleral lenses lenses again for a while. Graft still looking to be my best option and then the bombshell dropped ..... 30th Dec appt and I am advised that I have blood vessels that have grown in my right eye during the healing process of the hydrops, so graft is now not likely to be a viable option. In March I am told blood vessels can also be seen in the left .... just my luck :-( Scleral lens wear is now problematic to say the least and vision is not great and limited.
My GP has jsut signed me off with depression and I am due to see the consultant on Thurs 14th when I plan to tell him, this is not life and what next?????

Am I being daft or what? Feel I have kept things together for so long and tried to be straong for everyone however, I seem now to be at the end of my patience. The graft, my last resort now seems maybe no longer an option so what happens next............

It's been a rubbish 10 years, I was diagnosed late, told it would not progress much - it galloped along like a national winner! Hydrops who gets that? well me and 3 times and a graft not many need these I was told during initial appointments and now blood vessells ... whats that all about.

Think I just needed a rant (sorry :-( ) and maybe, just maybe someone will respond and remind me I am being daft and pull myself together!!!!
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Anne Klepacz » Sat 09 Apr 2011 9:45 am

Oh Susan - and here was I thinking that the fact we hadn't seen you for a while meant you were doing OK. What an awful year you've had. And you're amazing to have just got on with life and gone on working through it all. No wonder the news about the blood vessels has knocked you for six. What can I say, apart from wishing you all the best for your appointment on Thursday and hoping that your consultant will be able to come up with some options for you. Do let us know how you get on. I'm sure everyone here will have everything crossed for you.
Anne

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Andrew MacLean » Sat 09 Apr 2011 6:10 pm

Susan

I guess we are all shocked at the time you've been having. I don't think you are being daft.

Take care, and do let us know how things are going.

Every good wish.

Andrew
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Susan Mason
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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Susan Mason » Sat 09 Apr 2011 7:02 pm

Thanks Anne & Andrew.

Today hasn't been so bad, been to the football (hate it so not seeing it not really an issue :-) ).

Then shopping, gone quite mad in my old age shopping trolley, white stick and a lot of shouting at my husband, bless him he puts up with a lot (I ask too often, whats that? and then am asking about the next blur of colour I see often before he has responded to my first question - he is just too slow with his responses).

What worries me most is these blood vessels, what do they mean should I just get used to the idea of never seeing again? why do I seem to be having such a rotten ride with this silly KC????

all responses appreciated :-(
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Anne Klepacz » Sat 09 Apr 2011 7:48 pm

Hi Susan,
I believe ingrowing blood vessels can start to retreat once the cornea is no longer starved of oxygen with the lenses out. And one member did have treatment to seal off the blood vessels some years ago. So hopefully there will be some options for you - though I'm sure it seems a long wait until Thursday to find out for sure. All the best
Anne

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Susan Mason » Thu 14 Apr 2011 7:40 pm

well saw consultant at 11am and didn't go as well as I had hoped. Seems I have blodd vessels in both eyes and this means the success rate for the graft is reduced.
Not sure what next, just know current level of vision and lens tolerance is not acceptable. So next appt may bring more news, just feels at the moment it's all very negative and not going in the right direction :-(
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!

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Anne Klepacz
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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Anne Klepacz » Fri 15 Apr 2011 9:59 am

I'm sorry there wasn't better news at your appt. I guess it's a question of hanging on in there and hoping things might have improved in a few weeks time. Wishing you all the best and do keep posting and letting us know how you're doing.
Anne

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby mikkey3023 » Sat 16 Apr 2011 11:40 am

Hello there Susan , sorry to hear your problems , i had hydrops in my right eye a few years ago and it was absolute agony , could not tolerate any light whatsoever , and was in extreme pain , my thoughts are with you , be patient , hopefully things will turn around for you , best wishes to you .

Michael

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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby rosemary johnson » Thu 21 Apr 2011 1:18 am

Oh Susan! big hugs, and no you are not eing daft!
I've survived 4 (at least) hydrops, so much fellow feeling and support - though mine don't sound all as bad as yours.
If this is any sort of encouragement..... I found that even once the rift of the hydrops had healed, as per view through a slit lamp, th eye in quesiton was much more sensitive, and contact lens tolerance less, for, ooh, 9 months to a year. ANd the vision took a while to settle down after the second at least. OR maybe for my brain to get used to coping with it!
So your lens prolems may yet improve gradually.
What is th eproblem with the sclerals? - is it comfort/tolerance times (or lack thereof!) or poor vision, or both. Or??
If the main problem is the tolerance - have anyone suggested pigy backing? - that is, earling a soft lens underneath the hard one to provide a sort of cushion betwwen lens and eyeall.
They may tell you "Oooh, no, can't have you piggybacking your eyes would never goet enough oxugen and the veind eoud grow all the faster.
BTW, I seem o recall the problem with vens is not only having veins and start to grow across our field of vision,
but that they make a graft harder becaue of increasing the risk of rejection ANything with a blood supply is harder to transplant....
Silly quesiton maybe: do you wear your lenses one at a time? - some people find this very hard to get their heads round - because of always having one side otheir vision all fuzzy - but it does at least mean one is restng while the other works. and then you swap over.
Hang in there! - hope you get some better answers soon.
Rosemary

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Susan Mason
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Re: Acute Corneal Hydrops x 3 - graft the next option ......

Postby Susan Mason » Thu 12 May 2011 11:07 am

thanks to all for your replies, I have been under the covers for a while as am now really fed up with it all hence my late response.

Seems I am now listed for a graft however I am not sure if we are talking 50/50 these are good enough odds for me to take, whilst I know vision is poor now I am not sure grafting and then it being worse is something I could cope with. Waiting for the hospital to come back to me with more details and then maybe I can make a rational decision although I am told I will not likely be at the top of the list until the end of the year, so plenty time to consider.

One of my biggest problems is work they make life very hard and I am now trapped back in the battle of being off sick (diagnosed and treated for depression) and battling to be treated fairly and on a level playing field to my colleagues at work - so much de-ja-vu it makes me feel sick. And everyone I speak to (Access to Work/GP/Therapist) say 'oh constructive dismissal, it will be a fight you will have to battle' and I am not sure just at the moment I am up to it.

Lens tolerance, well could write a book here I think! Eyes never been good with lenses, when originally diagnosed was told 'oh, you have sensitive eyes may be a problem for the future' and this has been the case. When glasses no longer worked RGPs were tried, these were useless and after 10 months or so of regular leans refits and 2 hours wear then 4 hours wear I was approached with the yellow plastic apron and had saline poured over me as the attempt was made to fit the sclerals!
These worked ok for a couple of years and then refits were needed. At this point I should say ok for me was 6 hours or so and regular rinses, celluvisc drops in lens before insertion into eye etc etc (not to mention the initial acrobatics I had to master to get them in air bubble free).

Hydrops stated initially in the left eye in June 2008 and then once healed again left eye split and a second hydrops was experienced in the same left eye in September 2008. Down to one lens and doing my best however coping and in general felt ok about everything until on the 14th December the right eye experienced hydrops and vision was gone. No lenses to wear so after seeing the consultant we agreed that I was not actually ill, my brain still worked, as did my arms and legs etc so I continued at work as best I could. Maybe now with hindsight that was a mistake, can't go back though can we?
Anyway grafts now being mentioned and I am under the impression there is no imediate ruch, I am scared, hydrops needs to heal sufficiently for graft to be ok. Whilst I have no vision from right eye left cannot be done as I would not be able to see and I just get on as best I can. Work make life very challenging and I hang on in there until about 6 weeks ago when it finally all got too much and I just gave up.

My Dec 30th 2010 appt with the consultant threw me and after being told blood vessels that should not be there meant grafting was not a good option and then in March to see the contact lens chap and be told 'actually we can start to see them in the left as well, just all added to my stresses and pressures and finally I went over the edge on the 30th March agreeing I must be depressed and once again being given the drugs to take .... 'but will they make me see?' I asked and of course the answer is know and sight is what I really want.

Well no more for now as you are probably all needing a drink as I have possibly sounded quite neurotic (maybe madness is also one of my 'issues' :-) )

Once again thanks for your responses, I will post again when I can and whilst reading the forum is now not the easiest for me please do give me a nudge if you think you note anything of interest for me.

Best Wishes to all

Susan x
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!


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