Anyone else in the same boat?

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Jezzafletcher
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Keratoconus: Yes, I have KC
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Anyone else in the same boat?

Postby Jezzafletcher » Tue 24 Apr 2012 9:29 pm

Hi all - i needed a few days to recover from staring at the fish tank in Clinic, gawping at other blurry people in Refraction, gazing at walls in the laser clinic etc etc before posting on here!!! Sadly no one else with KC seemed to have had an appointment that day... Oh well. I wanted to check out other peoples experiences - hoping someone else (well not really hoping as i wouldn't want this happening to anyone else as it's a bit irksome) can give some words of wisdom/experience... The Keratotomy on my grafted cornea has not really worked - the cornea graft is still so really badly out of shape that in combination with my recent friend called "dense cataract" no measurements were successfully achieved. I am booked in for cataract and lens removal later in the year but the prescription lens that they are going to insert is going to have to be a "best guesstimate". Icing on the cake...? Nope... To cut a long story short...That came when I was given 2 collapsible "signal" white sticks & started the process of Registering as Partially Sighted. What a bummer. I don't want people to read this and be put off having a graft - I always knew with my severity that it was a long shot. Furthermore the graft is looking very healthy but nonetheless I do feel as if I have hit a bit of a brick wall... Come on someone - please tell me that there is life & not tea and sympathy after white sticks!
Jez

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Paul Osborne
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Re: Anyone else in the same boat?

Postby Paul Osborne » Tue 24 Apr 2012 9:47 pm

Hi,

Oh what an utter pain, seems like you have had the brown end of the stick.

Reading between the lines and from a friend's experience it sounds that your lack of vision has hit a certain threshold where the opthalmology people legally have to declare you as partially sighted. This happened to a friend who was really most suprised and to be honest distressed about this, but it was explained to her that they had to do so as the vision was so reduced that she was a potential danger to herself and others.

But from what I understand they are going to deal with the cataract (?), this surely is a good thing as it means that something can be done. Once the cataract has sorted itself out is there then the possibility that they can redo the graft and hopefully have one that is properly seated and so doing the job? After all a graft can be redone if the original rejects - whether that is the case that when the graft is not usable I don't know but I would certainly be enquiring. Do bear in mind that I don't know your history and so am thinking aloud. If that is the case then the white sticks may at a guess be a temporary measure whilst this is happening.

Anyway, good luck with it all and I hope that ultimately things end up well.

Paul

Jezzafletcher
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Posts: 74
Joined: Mon 20 Feb 2012 4:18 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: Anyone else in the same boat?

Postby Jezzafletcher » Tue 24 Apr 2012 10:08 pm

Thanks Paul... I think the reality is that I have battled with poor vision for many years and had to give up driving 8 years ago as a consequence! The top and bottom is that I think the sticks are, like me, a long way from retirement. My KC is very advanced and my corneas very fragile and thin as much at the periphery as in the middle hence much less stable. Who knows, maybe with cataracts gone things will improve.

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Paul Osborne
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Keratoconus: Yes, I have KC
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Re: Anyone else in the same boat?

Postby Paul Osborne » Tue 24 Apr 2012 10:20 pm

Ahhh, thankfully I can still see enough to drive - however if a contrast test was a required driving visual component then I would not be driving either.

Sorry to hear that things are not at the level of optimism that I had hoped, fingers crossed on the cataracts. I had one done in my grafted eye a couple of years back (due to steroid drops) and the difference was astonishing, so will be hoping that you have a result even half as good as mine as far as that goes.

I don't know if this helps and I know may come across as patronising and for that I apologise - but if you are registered as partially sighted you may well qualify for the likes of DDA, disabled rail card, parking permit etc etc. I know that none of them will offset the lack of vision but they can make life a bit easier (my railcard due to hearing aids certainly helps the wallet).

Paul

Jezzafletcher
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Posts: 74
Joined: Mon 20 Feb 2012 4:18 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: Anyone else in the same boat?

Postby Jezzafletcher » Wed 25 Apr 2012 5:47 am

Thanks Paul - DDA does apply and had done for some time now - made sure my employers OH have acknowledged it too. It's funny because I did think that registration may bring some help eg entitled to Blue Badge (could have been useful when getting a lift) - need to find out why I am not entitled. I can get a Disabled persons Railcard which would be useful on very expensive journeys to hospital but I still manage to travel independently (fiercely independent!!!) & can only use railcard with a helper apparently? I am lucky to have a reasonable employer and fairly well paid responsible job and have no entitlement to benefits anyway! My vision in one eye is "how many fingers @ 6 inches?", vision in the other is on the cusp of registration/non registration - it's that with the combination of lack of field of vision that pushes me into Registration as Partially sighted - grrrrerrr!!!!

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Paul Osborne
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Keratoconus: Yes, I have KC
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Re: Anyone else in the same boat?

Postby Paul Osborne » Wed 25 Apr 2012 9:12 am

Ah right sounds like you are already on the ball there. BTW the railcard does allow you to go without a helper and still get the discount - so if you need it for hospital trips it works out as 3 trips for the price of 2. It is not something that I really need as I rarely use the train unless heading into London - and it pays for itself in one trip if the wife is acting as "guide dog", as I say it helps with easing the wallet strain just a bit, but then I resent having to pay 40quid to go 50 miles on a train and that is another argument altogether and is irrelevant to this discussion or my salary!

liam82
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Re: Anyone else in the same boat?

Postby liam82 » Wed 25 Apr 2012 9:52 am

Jezza, so sorry to hear that mate. It really sucks, but keep your chin up and I hope things get better for you.

It really gives me perspective, of when Ive been feeling almost suicidal lately- that people like yourself, are doing a great job, dealing with much much worse situations of this condition than myself.

:)

Jezzafletcher
Regular contributor
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Posts: 74
Joined: Mon 20 Feb 2012 4:18 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: Anyone else in the same boat?

Postby Jezzafletcher » Wed 25 Apr 2012 6:27 pm

Thanks for the messages of support.

Paul - it's great to hear that you think of your wife in that way tbh I am using the "refusing to use my stick" as a motivator for me to ask others for help when I am struggling - you know the "can I have your arm a minute" - kinda defies social norms with colleagues, peers, superiors and those who report toe but it's either that with dignity or the white stick!

Liam - I have had thoughts like you too - I think many of us have. Tbh I thought long and hard before I posted what I did. It seemed self indulgent. It felt like seeking attention. I guess if I was honest "Mr so independent here" also had my suspicions re prognosis - hence my post to see if anyone else with KC was going to be in Clinic when I was!!!! I registered here spme years ago but left very quockly - i guess i wasn't ready! I am sure it is no coincidence that i returned 3 months ago...

I also was really worried that readers may worry that this was their future too - it isn't. There is a great sense of support at times like this from this site - I haven't sought that support before but have offered the odd pearl of wisdom or stupidity when I thought I could! Now it's kinda nice to receive.

Thanks :oops:

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Anne Klepacz
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Re: Anyone else in the same boat?

Postby Anne Klepacz » Wed 25 Apr 2012 7:12 pm

Hi Jez,
I think the last thing anyone could call you is 'self indulgent'! Although your vision is obviously a lot worse than that of most of us who post here, you clearly don't allow that to stop you working full time and then finding time to support others here. I guess we all go into surgery with high expectations and although we 'know' that a small percentage won't work out as well as it should, it's a bummer when you're in that small percentage. I hope that the cataract surgery will improve things. Meantime, it's two way traffic here, so don't worry about having a 'moan' when you need one! We're all rooting for you.
Anne

Jezzafletcher
Regular contributor
Regular contributor
Posts: 74
Joined: Mon 20 Feb 2012 4:18 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: Anyone else in the same boat?

Postby Jezzafletcher » Thu 26 Apr 2012 5:53 am

Thanks Anne - I try....!
Most of the time I manage to turn situations into jokes - you know the kind of thing - getting into the wrong waiting car & it not being a colleague that has offered you a lift but instead a completely unknown and terrified member of the public!!! On this occasion though whilst nothing in reality has changed (I am no more dodgy at crossing roads than I was before last week) it was a kind of watershed moment. I made the conscious decision both at work & socially to tell people straight away about the sticks (I knew the longer I left it the more it would become the unspoken skeleton in the cupboard). That way It gives me the "in" to ask for an arm for guidance. I show the collapsible stick to everyone to "get it over with". I also make a joke of the fact that I don't appear able to perfect the wrist "flick" to get it to pop together (it's elasticated). I turn it into a joke saying "wingardi leviosa" or however you spell it! Deep down I know that if Harry Potter did with his wand what I want to do with the stick it would have been "Prisoner of Broadmoor" and not Azkaban. I dunno folks but rather than moan (hopefully not my thing) I may from time to time post on here, a bit like a diary, my thoughts and tribulations of that's ok!


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