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31 March 2009

Do You Ever Get That Kicked in the Gut Feeling? [More:]
Just in case you didn't know, I have diabetes. I also have diabetic retinopathy. I go through a series of three eye specialist appointments every six months. Today was the last in this current series.

In a cross section a healthy retina looks like two low mounds meeting in the middle in a slight dip (centre of vision area). My left eye is perfectly fine. My right eye, however, looks like an exploding volcano where the dip should be.

Laser surgery has worked for me twice before in both eyes. I'm not so lucky this time. Because the damage is in the centre of my vision the doc can't use a laser because it will cause permanent vision loss.

At this point my only option is getting Avastin* injection(s) in my eye. This may also cause permanent vision loss. It's also considered experimental when used in eyes and that, of course, means insurance (at least, my insurance) won't cover it. It's expensive; much more expensive than mentioned in the Wiki article.

If I don't do anything I will have vision loss. I'll eventually go blind.

In essence, I feel as devastated as when I was first diagnosed with diabetes. I think this is a good thing. Hopefully I'll keep that mental picture of a volcano in my eye and do what I need to do to limit more damage.

*Avast(in)! As in Pirates. As in eye patches. Could it be any more ironic?
Oh dear, deborah. That is sobering and maddening. I'm so sorry to hear you have to go through this. But I wish you luck with the treatment and hope it's really effective. It sounds like it is the best of the choices available.

And you're sure your happy with your doctors and you trust them on this? Need any more opinions?
posted by Miko 31 March | 18:05
I am so sorry to hear this. As Miko said, maybe another opinion?
posted by essexjan 31 March | 18:08
Aw, deborah. I hope it all works out. They come up with new treatments and drugs every damn day. Here's hoping this one comes along tomorrow. Big hug.
posted by mudpuppie 31 March | 18:12
(((deborah)))
posted by jonathanstrange 31 March | 18:18
I'm sorry to hear this, too. ((deborah))
posted by halonine 31 March | 18:37
be strong, Deborah. We'll help get you through this.
posted by Lipstick Thespian 31 March | 18:52
Stay strong, deborah, and stomp on the foot what kicked yer gut. Big hugs. Chin up.
posted by Hugh Janus 31 March | 19:03
I would find vision loss devastating so I wish you well. I hope it all turns out well.
posted by trinity8-director 31 March | 19:04
(((deborah)))

This sounds so trying and tough.
posted by gomichild 31 March | 19:06
Deborah, so sorry to hear this. I'm wishing you good health and hoping you have luck with the injections. And hold onto that good vision in the left eye for the rest of your long, long life!
posted by LoriFLA 31 March | 19:07
So sorry for your troubles, deborah... I hope things work out okay.

I seem to recall hearing how a lot of Type II diabetes patients are almost instantly cured, oddly enough, after gastric bypass surgery. Doctors don't seem to know why as yet. (NOT a doctor myself, mind you, and certainly don't know if this might apply to your situation.)
posted by Pips 31 March | 19:20
Oh hun, that sucks. *hugs*
posted by sperose 31 March | 19:33
hugs. hang in there. thinking of you...
posted by Stewriffic 31 March | 19:43
(I tried to link to a couple articles, but I can't seem to get the link function to work on this new computer, but definitely google gastric bypass and diabetes... seems effective regardless of weight, too... seems to eliminate the Type 2 diabetes in almost 90% before they even leave the hospital... again, not a doctor, though, of course... all the best)
posted by Pips 31 March | 19:48
The Duodenal Switch procedure claims to have a near 100 percent cure rate. In Europe they sometimes use the duodenal switch procedure for the sole purpose of curing type II diabetes.
posted by LoriFLA 31 March | 19:51
Deborah, that really sucks. But before you panic - find out about programs for making the Avastin affordable. Expensive drugs can often be paid for by the manufacturer. That's what we've done for Mr. V's cancer drugs - $90,000.00 a year otherwise.
posted by redvixen 31 March | 19:56
But before you panic - find out about programs for making the Avastin affordable. Expensive drugs can often be paid for by the manufacturer.

what she said. there are programs out there like this. See if your doctor can hook you up.

Damn. So sorry. This sucks.
posted by jason's_planet 31 March | 20:18
Oh deborah. (((hugs)))

It's one eye right now yeah? Work on that, and you still have the other strong right now?

I don't mean to minimize, but you'd make a hot pirate. . .

Gosh, this sucks. Thanks for telling mecha. I really do feel sympathy and worry, and I'm sure other commenters feel the same.
posted by rainbaby 31 March | 20:18
Wow, what a nice response, bunnies! I really appreciate all your good wishes and suggestions.

I'm comfortable with my eye doc and have no doubts in how he's treating me.

The mister has sent an email to our extended medical provider to see what options we have.

I'd love to get lap-band surgery (fewer complications, adjustable, etc. - I've done quite a bit of research) but it's not covered. Which really pisses me off, because in the long run it'd be cheaper for the insurance company than treating a person with diabetes.

The mister suggested I could get eye patches to go with every outfit. I said I wanted sparkles!

Again, thanks bunnies, y'all have great shoulders. ;-)
posted by deborah 31 March | 20:25
I said I wanted sparkles!

With appliqued bunnies, definitely. But no need to cross that bridge just yet!
posted by Miko 31 March | 20:39
Deborah, I am not a diabetes sufferer, nor do I play one on television, but I am blind in one eye, and have been so for more than a year, so I feel somewhat compelled to speak to that issue.
I lost the vision quite suddenly and permanently in my left eye last Valentine's Day for rather nefarious reasons. Nothing too dire, nothing worth repeating, it's just gone.
I mourn the loss of your eyesight, because I know how scary it feels to be labeled 'blind', to a certain extent.
Let me just chime in though, and tell you that the end of the world is not in sight through your good eye. The loss of one eye, may be the end of decent depth perception and steroscopic vision, but it does not mean the end of sight itself.
I have compensated mightily with my right eye, which not only functions normally, but SUPER-normally as a result of the loss of my left eye. Loss of vision is a bitch, I am so with you there, sister. But loss of vision in ONE eye doesn't spell the end. I know, I've been there. Now, granted, loss of vision in one eye means you only have one to spare, and perhaps the advice that folks are giving you upthread re: your diabetes can be beneficial to you. Me, I guess I just assumed you were type I, but if you are type II as other suggest, perhaps some of these other treatments could be really good for you. I don't know about any of that. I am just here to let you know that losing an eye to blindness is not the end of the world. It's just the end of decent nighttime depth perception.
posted by msali 31 March | 20:45
My mom lost vision in one eye when she was about 17. Mostly she just has passengers check the right side when she wants to change lanes. Other than that, you can't, um, see any difference between her and anyone else.

((deborah))
posted by lysdexic 31 March | 21:11
*hugs deborah*
posted by BoringPostcards 31 March | 21:27
((deborah)) sorry to hear this. best wishes and warm thoughts coming your way.
posted by Twiggy 31 March | 21:39
Thanks to msali's post I remembered that my brother is blind in one eye (duh). The fact that I didn't immediately think about that is another data point in support of what msali says. My brother's vision has adjusted and he drives fine, enjoys life fine, does a mechanical-type job, watches movies, travels, reads and draws...really does not have to make any compromises in daily life. Of course I think he'd prefer to have his vision in that eye back (he lost it due to an eye infection in his 20s) but his quality of life is not horribly impaired.

It does sound like longterm management is still going to be needed but I do hope you hear more stories like this. I don't think impaired or lost sight in one eye is too uncommon. Not what we'd all wish for you or you for yourself, but..you will manage your vision problems with grace, I know. And I hope they are as low-ish-impact in real experience as these two experiences describe.
posted by Miko 31 March | 22:03
Hopping in late, but thinking about you, very hard.
posted by danf 31 March | 23:00
Do You Ever Get That Kicked in the Gut Feeling? - Yeah, but it's just angina. Also, that slammed in the back feeling and that punched in the arm feeling.

((hugs to you))
posted by Ardiril 31 March | 23:05
(((deborah)))

I am recently diagnosed, so I went through that kicked in the gut feeling (although it got buried among a bunch of other kicks in the gut I've gotten in the last year, so the full impact hasn't set in yet). Also, my niece's eye was recently injured, so this hits home in that way too.

My goal this year is to lose about 80 pounds and I hope to do that by biking. I hope you have a way to work on your own situation!
posted by stilicho 31 March | 23:27
::hugs:: I wish I knew how to help more. Fight on!
posted by casarkos 31 March | 23:29
Wish I could give you a big hug in person and I hope you find a treatment that works for you.
posted by jamaro 31 March | 23:47
((deborah))

My mom has had a lot of eye troubles. She's had early cataracts and retinal detachment in both eyes and has schleral buckles around both eyeballs.

I should mention here that my mom is 60-ish and apparently a badass, despite an immune system problem. She didn't call me until after the first one was done. I looked it up and was aghast. When she called me after the second one, because she didn't want me to worry, my response was, "Geez, Mom, it wasn't good enough to have one bionic eye?" She laughed. I called her every single evening after Dad went to bed for about two weeks after each procedure because she was so bored and had to keep her head tilted at a specific angle, even while sleeping. Books and TV were pretty useless and she wasn't really interested in audio books.

If you want stories about my family's, and especially my mom's, morbid sense of humor let me know.

She's lost all but primary color and high contrast in one eye. She is still driving and works as a successful commercial artist, though. A bit of laser work took care of most of the "pucker" in the middle of her bad eye.

I'm amazed at what can be done with such sensitive, delicate body parts.

Much love and good wishes.

posted by lilywing13 01 April | 02:58
Much Love, hugs and wuffles to you deborah.

My Mom has essentially no vision in one eye and recently underwent cataract surgery on the good eye. Having only one good eye made it more stressful since any problem with the surgery would mean blindness. We were pretty worried, but things worked out OK. I can, by proxy, feel some of your stress about the potential loss of vision in the one eye. It really sucks. So, sending big soft warm cudly hugs to you.
posted by mightshould 01 April | 07:23
(((deborah)))

Adding to the chorus of people who have family members with "limited sight" - my father lost vision in one of his eyes after tramautic retinal damage (he was mowing the lawn and kicked up a steel filing). There was a long winter where he seemed to be depressed and old-feeling and all that stuff, but when summer came he started to perk up again. Loss of depth perception hasn't stopped him from machining or electronics or playing video games or reading. He went through a period of prefering audio books, but after he got a new prescription for his good eye he can see pretty well.
posted by muddgirl 01 April | 09:20
Hugs hon and I also have a friend who can only see out of one eye. Hasn't stopped her from being a brilliant artist. I bet you beat this, though.
posted by mygothlaundry 01 April | 11:04
Thanks for all the positive stories of people with vision in one eye. It's made me much more calmer about the situation.

It was rather a shock to find out that my right eye is in such bad shape. I hadn't noticed any vision loss until the doc told me to cover my left eye. Doing that I can see the areas affected. There are a lot of holes in my vision (missing pixels is my description of it). I guess my left eye is compensating for it.

Thanks again, bunnies, for all your good thoughts, whuffles and hugs. Right back atcha!
posted by deborah 01 April | 11:30
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