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Some bad news. (remember "rods and cones"?)
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Minor Deity
Picture of Amanda
posted
I've been waiting to pass on some bad health news. Didn't feel up to discussing it, and even now it's hard to face it as a reality - still in denial. Hoped sharing it might help, though.

About a month ago I was given a diagnosis of "wet macular degeneration". If you never heard of it, it's an incurable eye disease leading to blindness with an uncertain time line.

I thought the right lens of my new glasses was improperly ground. Was disappointed when I tried them, after (with son's help) measuring pupillary distance to order them online. My first bifocals. Zenni company said they'd replace them if it was their fault - to just send the prescription back. I delayed it, figuring I'd check my eyes with a new script to send in, rather than just ordering new ones. Maybe my vision had actually changed in the time I'd put things off.

In between, I noticed it wasn't just that my right eye's vision was blurry (I'd gotten to covering that eye to read text or watch videos clearly). Then one day, I thought I'd experimentally check covering the LEFT (good eye) first. Saw print came out "wavy". Immediately sensed it was serious, as confirmed by Dr. Google, who said it signaled one of several bad eye diseases, including the diagnosis above.

Called ophthalmologist next day, where they said I couldn't get in for at least five months. That I could see their optometrist instead right away, though! I'd only been relying on that ophthalmologist despite distrust for various reasons, but thought he was the only one in town. I learned otherwise, though, and told them so. Thus, no thanks. They pressured me a bit (Their optometrist herself could use a slit lamp to check my retinas!).

Me: "No".

Magically, they fit me in next day, with ophthalmologist, whence I got the bad diagnosis and he got me in with a retinalogist, who firmed up the diagnosis with their fancier equipment. Detail by photographing a magnification of the retinas, their veins highlighted in motion by an injected dye.

What was worse, the bleeding it showed "had gone on for some time" HairRaising. (How come my eye docs hadn't noticed this before?? I'd always said to look carefully at my retinas as my mother is blind from this same disease.)

Retinalogist managed to fit me in with my first injection that same day before returning home (an "anti-VEGF" - chemical that prevents regrowth of small, abnormal capillaries infiltrating retinas). That's the only treatment able to - hopefully - slow down the (irreversible) blinding process in the wet variety of macular degeneration.

Deal is, this anti -"endothelial growth factor" chemical can effectively dry up these bad little capillaries that grow into the retina ("choroid layer") when so-called dry macular degeneration turns "wet". That's what it does 10% of the time for those developing AMD, "age-related macular degeneration" - the primary cause of blindness in us "seniors" (over sixty).

The fragile, leaky capillaries (blood and toxin-laden fluids) permanently kill cells in the macula - source of central vision. (Remember reading about rods and cones in High School?). They scar and can't be repaired. The dry cells trash your central vision slowly, but when they get "wet" it can happen rapidly - even in a matter of days, depending (on??)


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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By now, I've had my second injection (good news, the eye injection isn't as painful as you might expect) and I think the right eye vision is somewhat improved . (Still wavy, but the dark shadow in the middle is decreased).

On the one hand I'm spending LOTS of time researching this disease (intending to get second opinion - complex reasons. Like, can I find a way to avoid taking Xarelto - anti-coagulant? It can't possibly be safe with retinal bleeding).

And on the other hand, I'm still in a state of denial and shock.

The uncertainty of the time line is pretty anxiety-provoking. (As I understand it, the bleeding can recur at any time, though the anti-VEGF shots help.) My mother's top-notch doctor kept her sighted ten years longer than peers diagnosed at the same time, using a prototype anti-VGEF, Avastin - still only being used off-label.

I'm hoping on-going stem cell research (thus far only promising for the dry kind of AMD) can move faster.

I can't picture how I'd cope with blindness (UGLY word!) but I guess I'm best off thinking of it as little as possible. My mother has been legally blind for some time (can't read, drive or recognize faces). I'm kind of bitter thinking about previous doctors who I figure have been sloppy examining me for a good while. Thanks to them I stopped taking the AREDS2 vitamins ("Do you want expensive pee?".) Also, took my Amsler grid down from the wall - a reliable self-check for AMD development. Detects that tell-tale waviness.

OTOH I'm not really sure what good (apart from the vitamins which DO help slow things down) earlier diagnosis would have done. Well, OK, I'd have started the injections sooner.

PSA - DO learn about this illness and keep an eye out early on for signs. (The Amsler Grid IS handy). That is, especially if you have predisposing risks - heredity for one. (Also, high BP, smoking, high cholesterol and overweight. Amazing how much all cardiac profile risks overlap!)

Also, would welcome any thoughts about how to cope with apparent conflict between the treatment for AFIB (arrhythmia) - blood thinners - and the eye disease. Distressing that retinalogists/ophthamologists are among the MOST MDeityish. Overall do NOT give patients the time of day. Seems to be a personality type in choice of medical speciality. Also they - seriously - write their office notes in CODE! (Only for patients, not for their doctors). The less they understand, the less patients ask questions, thus taking too much of their precious office time.

Meanwhile, electrophysiologists don't seem to have heard word one about retinal issues overlapping with arrhythmia treatments. It's kind of a terrible cosmic joke - would you rather have a stroke or go blind? (Only consolation is that strokes can also lead to blindness, so what's the actual choice?)


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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On the bright side, I've finally learned how to spell "ophthalmologist"! Yes


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of wtg
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Sorry to hear about your diagnosis; it's always a worry and challenge to deal with a chronic problem. As best you can, just try to take a deep breath and take one day at a time.

Comfort


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Outrage is warranted. But outrage unaccompanied by analysis is a danger in itself.

Bazootiehead-in-training



 
Posts: 33244 | Location: Somewhere in the middle | Registered: 19 January 2010Reply With QuoteReport This Post
Minor Deity
Picture of jodi
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So sorry tear this, Amanda. How frightening and frustrating. Comfort


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Smiler Jodi

 
Posts: 19794 | Registered: 20 April 2005Reply With QuoteReport This Post
(self-titled) semi-posting lurker
Minor Deity
Picture of ShiroKuro
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Amanda, I'm so sorry to hear this! It sounds very scary! As WTG said, lots of deep breaths and take it one day at a time.

Comfort


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My piano recordings at Box.Net: https://app.box.com/s/j4rgyhn72uvluemg1m6u

 
Posts: 16398 | Location: not in Japan any more | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of CHAS
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Sorry to learn of this. Hope much of the problem can be avoided.


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“You don’t stop laughing when you get old; you get old when you stop laughing” — George Bernard Shaw

 
Posts: 23974 | Location: Still living at 9000 feet in the High Rockies of Colorado | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of wtg
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Have a friend who does eye research at a university, and I asked her about Susvimo, a recently approved treatment for wet AMD. Also about AREDS.

https://www.gene.com/media/pre...chs-susvimo-a-first-

Thought I'd pass along what she said:

quote:
"Wet" AMD arises because some blood vessels from the choroid (a plexus of blood vessels in back of the retina) grow through a membrane separating the choroid and retina, and leak. No one knows exactly why this happens, but a friend/colleague of mine provided some proof that the choroidal capillaries next to Bruch's membrane die, making the membrane no longer competent, and killing a supportive structure (the RPE) for the photoreceptors. I found the same thing in an aged monkey colony I was working with. Evidence but not proof.

What is true is that the strongest predictor of who will develop wet AMD is hand grip strength - which correlates strongly with cardiac health. Interestingly, the best preventive measure for AMD is ... exercise! Just plain old walking. Even if you have a genetic predisposition. It is also the best preventative for Alzheimer's, diabetes, falls, kidney insufficiency, and just about any other age-related disease/disorder you can think of. Not supplements. Exercise, which is anti-inflammatory and great for all-around vascular health.

I know the person who ran the AREDS study. We were both postdoctoral fellows at the institute at the same time. She is smart, ethical, and driven to do the best for her patients. The problem with the AREDS study is that they randomized people to treatment vs placebo groups, which is what all clinical trials do. However, "random" does not mean "matched", so it's possible if you're really unlucky to be left comparing 2 groups who were randomized but not matched. Which is what happened in the AREDS study, and ... you guessed it ... the group taking the supplement were a little healthier at the start - maybe not such a big deal except that the effect of supplementation was small. What the AREDS supplement gave people was hope, and in the time before treatment was available it made docs and their patients feel better.

Fast forward to the anti-VEGFs, the first real treatment for wet AMD. Anti-VEGF works by reducing the growth of new blood vessels, such as those that cause problems in diabetes and AMD. The problem with these treatments is that monthly shots were required to keep the new vessel growth at bay. A number of companies have been looking at long-acting treatments, and Susvimo is just that - it's an implant that can be filled every 6 months with Lucentis, which is much better tolerated.

But many more longer-lasting treatments are in the pipeline of various companies, so stay tuned.


I'm thinking that you shouldn't feel too badly about stopping the AREDS. And if you aren't walking regularly, try to get a walking program in place, even if it's just inside your home during the winter months!

Also take hope that some very smart people are working on better treatments....


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Outrage is warranted. But outrage unaccompanied by analysis is a danger in itself.

Bazootiehead-in-training



 
Posts: 33244 | Location: Somewhere in the middle | Registered: 19 January 2010Reply With QuoteReport This Post
knitterati
Beatification Candidate
Picture of AdagioM
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I’m so sorry about this diagnosis, Amanda.


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http://pdxknitterati.com

 
Posts: 9040 | Location: Oregon | Registered: 06 June 2005Reply With QuoteReport This Post
Pinta & the Santa Maria
Has Achieved Nirvana
Picture of Nina
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I'm so sorry. Here's hoping some of the new treatments work, and the AMD proceeds very, very sloooooooowly.
 
Posts: 34548 | Location: West: North and South! | Registered: 20 April 2005Reply With QuoteReport This Post
Serial origamist
Has Achieved Nirvana
Picture of pianojuggler
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Sorry to hear another slice of bad news. Eye problems are scary.


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pj, citizen-poster, unless specifically noted otherwise.

mod-in-training.

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All types of erorrs fixed while you wait.

 
Posts: 29192 | Registered: 27 April 2005Reply With QuoteReport This Post
Does This Avatar Make My Butt Look Big?

Minor Deity
Picture of Cindysphinx
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I am so sorry you’re dealing with this.
 
Posts: 19449 | Location: A cluttered house in Metro D.C. | Registered: 20 April 2005Reply With QuoteReport This Post
"The nation’s floundering government is now administered by a gangster regime."

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Minor Deity
Picture of Piano*Dad
posted Hide Post
Hugs. And hopes for the research. As someone with a substantially dead optic nerve (left eye), I can empathize.
 
Posts: 11178 | Location: Williamsburg, VA | Registered: 19 July 2005Reply With QuoteReport This Post
REPEAL THE 16th AMENDMENT!
Minor Deity
Picture of markj
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Sorry to hear this Amanda. I hope you find something to help.


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Shrink the damn military industrial complex already!

 
Posts: 13219 | Location: Wisconsin | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
posted Hide Post
Your caring responses made me feel better, friends. (Sorry to hear about your situation, PD. Couldn't help picturing Moshe Dayan and your dashing appearance.)

Makes one so protective of a single working eye, doesn't it? I just wish it weren't reportedly inevitable with wet AMD for a second (dry) eye to
turn wet and thus "broken". Frowner

Wtg, your detailed second reply was extremely helpful.

How fortunate to have a contact with someone familiar with this accursed malady! Have a longer query to send on, in case knowledgable friend has any ideas.

(Basically, the issue of what research says about how use of anticoagulants affects wetAMD. I need to persuade electrophysiologist to insert "Watchman" or AtriClip. Already raised topic earlier.)


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
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