I found out a few days ago that I'm quickly going Blind....

[Up2Late]

Last edited Mon May 20, 2013, 12:34 AM - Edit history (1)

...and it's really bumming me out.

Well, not completely blind, just blind enough that it's probably going to keep me from ever getting a job in the field I went to school for.

See, I was a film/video editor (Plan A) and then a Photographer, until the digital cameras put an end to that career (Plan B) and so I went back to school from 2009-2011 to be a computer graphics artist (Plan C), Not sure what to do for Plan D.

See, the last year or so I've been having trouble seeing clearly (which is a bit of a problem when you are trying to do graphics on the computer) but I just thought I just needed new glasses so I could read better and to correct my astigmatism, which had been getting a lot worse.

So I went to the eye doctor, but about half way through the eye exam the doctor stops and takes me into a room to measure my cornea angle.

The results were not good. She said my cornea angle was amazingly steep and that I couldn't get glasses strong enough to fix the multi-vision problems I was having and said she thought I probably had a degenerative eye disease called Keratoconus.

Here's a link to more info about it, if you are interested: http://www.nkcf.org/

With my new glasses it's like looking though a dirty windshield, but that's as good as they can do with glasses.

She said for me to have clear vision I'd need to get Rigid Gas Permeable (RGP or GP) contact lenses, but I have a lot of problems with itchy eyes, due to allergies, and the job I'm looking for would involve long days in front of a computer, so I'm not sure if hard contacts would be too uncomfortable to tolerate.

Also, they say, when you have KC, your eyes keep changing for about 10 years, I think mine have been changing for about 3 years at this point. And if it gets really bad I might need Corneal transplant surgery, so as you can probably guess, this has all come as a bit of a shock.

I know few here will even read this, but I just needed to vent a little and maybe get some advice, because this is a problem I can't really put on my facebook page, because it would be like putting a giant red flag out there that says, "don't hire this guy!"

So anyway, that's it, anyone have any experience with Keratoconus or Rigid Gas Permeable contact lenses or just have a few words of encouragement?

[applegrove]

1. So sorry this is happening to you. Take heart that having been in so many creative

fields you will be great in the next field you choose. So many transferable skills there. We are all behind you.

[Up2Late]

8. Thanks for the kind words

I did also learn some 3-D modeling, which was my favorite part too, so maybe that can be Plan D if I get a bigger computer monitor. I have a 23' flat panel now, but the 27" might help.

[NightWatcher]

2. I love this forum. It's a great place to vent about being shit on

without coming across as whining. Sorry to hear about your eyes. I find a strange humor in sitting back watching certain parts of our bodies fail. I have my own issues which will be issues till they kill me, but I'm strangely cool with it. It's the unexpected add ons that feel like the real kick in the pants. Just when you learn to cope, everything changes.

Good luck and I hope you find a good Plan D or E or whichever you're on. I don't even know which plan I'm on. A quote from a movie I just watched, "life is like a wave, if you just stand there it will knock you down, but if you dive in you'll come out on the other side".

[Up2Late]

9. Thanks...

...yeah, losing my vision was definitely not in the plan. Thankfully, most cameras are auto focus now, because I can't manually focus a camera anymore.

[Smarmie Doofus]

3. K and R. No experience w. this condition but do what you can to keep a positive attitude.

Easier said than done, I know; but hope is a better companion than fear.

[Up2Late]

10. I'll try, but it hasn't been easy...

...I think the hardest part is trying not to get depressed over the whole situation.

[Downwinder]

4. Thanks for the post. The symptoms shown at the link

are what I see. Have to see if it is tied to my MS.

Do you qualify for Social Security Disability?

[Up2Late]

7. The link I posted above has a lot of good info...

...but I'd go see your eye doctor to answer the question about if it's related to the MS, I'm definitely no expert on Keratoconus yet.

Don't know about the disability stuff yet, but I doubt I'd qualify, since I'm only 49 and just fat and out of shape, but nothing seriously wrong with my back or legs.

[Downwinder]

13. Loss of vision should qualify. Talk to your Dr.

I didn't do it when I should have and as a result I lost it. But I did not have a diagnosis. Ended up on SSI and Medicaid then kicked off that and onto Social Security early retirement with a couple more years without medical.

[Up2Late]

15. Yeah, I guess I better get that 2nd opinion soon.

Plus, my Department of Labor adviser (they paid for my last 2 years of school) is a Blind woman, I think she said she had acid splashed into her eyes, so if anyone would know it would be her. Of course, she might be totally unsympathetic too, considering how much worse her blindness is.

[KC]

5. I'm sorry

that you are having to go through
this.
The first thing is to please make
sure that you are seeing a ophthalmologist
(an MD) not an optometrist for this. Also
a second opinion is always good to get.
Try to stay as positive as you can. I'm sure
that the progression of this disease is
different for everyone. Hopefully if you do
have this, yours will be slow!
This is a great group to vent!

[Up2Late]

6. Thanks, yeah, the 2nd opinion is my next step...

...and hopefully, since the contacts wouldn't be for vanity reasons, they will be covered by my insurance at Kaiser Permanente:

[Warpy]

11. Keratoconus is fixable with a corneal transplant

While they can do both eyes at the same time, doing both raises the risk for rejection steeply.

A corneal transplant won't make your day or even your next six months. The stitches are left in from 6 months to a year and until you get used to them (took me weeks!), it feels like you've got a kitchen scrubber under your eyelid. Moisture drops do help, but you'll use them frequently.

After everything is stable and the stitches are out, you'll be fitted for contacts. If you can tolerate contacts, your vision will be nearly perfect.

However, they don't talk transplant to you until you do go blind. You'll also be on antirejection drops forever, but they're reasonably priced.

It's a big deal of an operation, bigger than I had anticipated, but even with being unable to tolerate contacts because of another underlying disease process, my vision isn't too bad with thick glasses.

There is hope out there. Going blind is truly terrible. Being blind is just a nuisance. And knowing that there is a treatment for what ails you is priceless.

[Up2Late]

12. Yeah, I hope it won't come to that.

How long ago did you have your surgery?

And what is you vision now with and without glasses?

[Warpy]

14. I had my surgery 7 years ago.

Last edited Mon May 20, 2013, 10:37 AM - Edit history (1)

I have a cousin who had it 53 years ago and says that the vision in the transplanted eye is better than through her own eyeball.

Without glasses, my vision in that eye is very poor. With glasses, it's 20/50 and I'll take it. It beats the hell out of "blind" and allows me good depth perception for driving.

ETA: Go for the contacts now. Get antihistimine drops for your eyes and do take frequent breaks from the computer screen. You will be wearing the contacts after surgery because if you think your astigmatism is bad now, wait until you're looking through somebody else's cornea!

I found the contacts to be surprisingly comfortable and they improved my vision to 20/20. Unfortunately once they're in, they don't come out of my eye unless the doc pries them out with a scalpel, not fun!

[quadrature]

16. RGP user here

I am a long time 30+ years,
wearer of hard contact lens.

in later years, my ODs led me to believe
I have some K-cone.
( words like , "I think", and "some steepening&quot

If corneal RGPs don't work, there are
sclerals and hybrids.

perhaps your itchy eyes can be fixed and
you will be able to tolerate RGPs.

glasses cannot fix irregular corneas.

I would do anything to avoid a cornea transplant,
just my 2 cents...If you can get to 20/40
you can have a drivers license. If you expect
perfect vision, you will be disappointed.

[Up2Late]

19. I've always been a bit afraid of hard lenses...,

...I chose to wear soft lenses when I first got them about 30 years ago. I haven't worn contacts in about 15 years, but I guess I should just give them a try and see how they feel. Plus they have a lot of new types that may be better than the old kind.

[flamingdem]

17. I feel for you having

also had eye problems and needing my eyes to make a living.

Have you checked with the best eye institutes such as Jules Stein at UCLA?
It's amazing what they are doing with research on eye conditions. You can
probably find literature online if you haven't looked already.

[Up2Late]

18. I'm going to go to get the 2nd opinion at KP

(Kaiser Permanente, where I currently have an individual heath plan at $500.00+ per month), but locally we have the Emory Eye Clinic, which was were some of the first research was done on Keratoconus, so hopefully, if KP can't help me, they will refer me to Emory and then hopefully cover that treatment (I hope).

[LiberalLoner]

20. I am so sorry this is happening to you.

I wish the best to you and am hoping for a miracle for you.