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My
Personal Fuchs' Timetable
I was about 40 when I was diagnosed. It was years before I had glare
symptoms, and then many more years before Fuchs' got cloudy and really
affected my lifestyle with galloping vision changes. By that time I was
60. So the first thing to do is not to panic, and begin to learn all that
you can about Fuchs'. Knowledge is power. By the time I had the
transplant, at age 63, I had absolutely no fear, and in fact my vision now
is better than it's been for years.
This eye problem does play by its own rules. If you ask a doctor what
kind of timetable are we looking at, he will probably give you a vague
answer. That's because Fuchs' moves at different rates of speed in
different people, and nobody can predict how it will behave in any
individual. Many of us are lucky and it takes a long time.
It might encourage you to know that I was first diagnosed with
endothelial dystrophy in 1980, it was not until 1987 that I noticed the
symptoms of glare and halos, and some of that was due to cataracts. I had
a cataract surgery on the worse eye in 1992, and not until 2000 did my
worse eye get the corneal transplant. So it was 20 years before my corneal
dystrophy came to this point. The disease can move very slowly, and for
some people may never cause a serious problem at all.
I went through Fuchs' corneal dystrophy from beginning to end, and was
still able to work. I have learned many tricks and ways to get by, which
are posted on our Fuchs' websites. I've been able to deal with my eye
problem much better since our support group started.
There is not much for the doctor to do except wait until the Fuchs'
patient hits the foggy stage--then Muro ointment or drops can help for
awhile. I happen to have a "foggy" day today. The effect is like looking
through a dirty sheer curtain or like your windshield needs cleaning
really bad! The color white sort of changes to ecru or a gray. It is
really quite weird. I had one "better" eye that did most of the work. But
reading became a real chore.
If you've read through my website, you will know the stages of my
corneal dystrophy caused different problems, first the glare and halos
from lights at night, then the cloudy vision in the morning--but not all
mornings. I've known Fuchs' patients who also had pain. (I did not have
the pain stage.)
I've known for about 20 years that I had this "something with a big
name." The fogs just came on me within the last two or three years. Glare
before that. Almost all of our Fuchs' Friends still have to work, and that
is a trial. We're all muddling along the best we can.
The disease usually moves slowly. I've been able to manage mine for
many years using wraparound sunglasses for glare, and then Muro ointment
for the fogs. One thing our group has experienced is that stress, fatigue,
crying, humidity, seasonal allergies and a few other things will always
make our Fuchs' act up and our vision worse. Then when we least expect it,
our vision will get better. Very frustrating!!! You can live with Fuchs' a
long time, but it seems that eventually you may end up being so troubled
in vision that a corneal transplant is needed. More than 95% of corneal
transplants are successful. However, it is not a surgery to enter lightly.
It's a full-time commitment to take the proper care of yourself during the
healing process.
I was first diagnosed with Fuchs' (well, actually, at the beginning
stages they don't even call it Fuchs') over 20 years ago. My eye doctor
mentioned that I had the beginning stages of blah, blah, blah (some big
word I forgot immediately). In 1987 when I went to my eye doctor he again
mentioned that I had "blah, blah, blah," but this time I said, "Would you
write that down?" It was endothelial corneal dystrophy, and he mentioned
Fuchs' Syndrome. When I got my new eyeglass prescription, I told my
optician what I had. She was the first one to give me any enlightenment on
the subject. She suggested I get a tint in my glasses and she mentioned
another patient who had it. By following up on this, I found a corneal
specialist. I was so distressed by the glare, not to mention the mystery
of what this eye problem was, that I went to see the specialist. He
examined me, told me I had Corneal Dystrophy, and then he sent a letter to
my regular eye doctor about my visit and the diagnosis. My regular eye
doctor then called me in for another appointment, explained Fuchs'
Dystrophy to me and gave me a pass to the doctors' library at a local
hospital so I could read up on it for myself. Nowadays I'd have hit the
Internet.
At that time my symptoms were glare and light sensitivity, and for many
years I got along very well using sunvisors and wraparound sunglasses. In
1992 I got a cataract fixed in one eye, and again I got along with my big
old wraparound sunglasses.
Only about two years ago at age 61 did I notice the cloudy vision in
the morning. I went to my doctor, grumping and groaning because I had this
"scum" over my eyes in the morning. I had read about Fuchs' 20 years
earlier that it might develop into cloudy vision--BUT I HAD FORGOTTEN!
When the doctor said, "That's your Fuchs'" I said "duh...."! Then he told
me about using Muro ointment at night to improve my morning vision. It
helped for awhile. But eventually I had to give up most driving.
I continued to work full-time as a Realtor, but my husband took his RE
license, too, and he drove me to appointments and participated in my
transactions. I still had the negotiating skills, knowledge of contracts,
know-how about computer work that helps so much in real estate now--I just
didn't feel comfortable driving. You know everybody driving in southern
California goes like a house afire, and that does not give me the time to
figure out a street sign or whether the light is red or green!
When I was first diagnosed with Fuchs', I had only the "guttata," which
the doctor may call an "orange peel" or "hammered metal" appearance on the
cornea. It took years before it affected my vision. I had more problem
with the cataract (an entirely different part of the eye).
I've never heard of anything I could do to forestall the progress of
Fuchs'. The ointment is not a cure. It just reduces the cloudy symptom. I
put it in both eyes every night. Although one eye is not as bad, if it
turns out to be a humid or stressful day, my "good" eye sometimes goes
cloudy, too! So, although that little tube is expensive, I'd rather get
the best possible vision in both eyes. Actually, I should clarify that. It
doesn't improve my vision (as in 20/50 20/80). It just controls the "pea
soup," and even if I had 20/20 in both eyes, that pea soup would stop my
vision cold.
Fuchs' is somewhat like looking through a steamed-up shower door. With
this corneal dystrophy, nice sunny dry days give me pretty good vision
(but not legal to drive), and on humid or rainy days the cloudiness
(actually edema) in my corneas can't evaporate off and I stay foggy all
day. Mornings I can hardly ever see, but by evening my vision is pretty
good--hence I'm a night owl.
Some Symptoms
For all my symptoms from start to finish, see my Fuchs' Dystrophy
website Through A
Glass Darkly and check out the page of informational links. Then visit
Bob's Official Website for
Fuchs' Corneal Dystrophy.
My eyes began to cloud almost three years ago, but even on a "clearer"
day I had the problem that if I bent over, my vision immediately clouded.
My doctor had never heard of it, but he surmised that the bending over
increased the pressure in my eye, thus leading to the fogginess. Normally
my eye pressure was OK, 20 or thereabouts.
I used to think Fuchs' went in a pattern, that the pain aspect came
when the Fuchs' was advanced, and they try to do the transplant before you
get to the pain stage. I am puzzled about our members who are having so
much pain when their vision is still quite good. Maybe that's why doctors
don't tell us much about Fuchs' if it's as unpredictable as that.
Humidity makes all us Fuchsies more foggy. Moisture is less able to
evaporate off our corneas. Yesterday it was clear and sunny and I was in
heaven walking through my yard making discoveries I'd been missing for
five days. When the humidity comes, there's not much you can do about the
vision. We can compensate for a lot of things, but not humidity. Some days
you just gotta say, "Oh, the heck with it!" Call in sick. Nuthin' else to
do. When I have a clear day I work like a house afire. Try to get ahead
while the gettin' is good. The "good day" and "bad day" aspect is why I
call it "Fickle Fuchs." Since I had one eye transplanted, I can get work
done every day, because even if one eye is foggy, the other one is bright.
But I still remember a few weeks back when I was in tears because I
couldn't read any of the phone numbers I was trying to dial.
My Favorite Coping
Tricks
I'm 63, and I've been living with Fuchs' Dystrophy over 20 years. I've
had the foggy symptom about 2-3 years. I guess we all figure out a few
tricks to help us cope with it. The longer the time since I woke up, the
better the vision. The excess moisture evaporates off as the day wears on.
I live in southern California, where the climate is often dry and sunny,
which helps my vision. On humid or rainy days I stay foggy much longer.
Another thing that will give me vision troubles is lying down or bending
over. If I want to take a nap during the day, I prop myself up on a bunch
of pillows and sleep sitting up so my vision won't get so bad.
The best trick I use to dry up my eyes is to start the day at my
computer. I recently got a large monitor, and I learned how to boost up
the print so I can do research, which is about all the reading I do
nowadays. Instead of my regular glasses, I put on those cheapie "halfers"
from the drugstore so more air can get to my corneas. Staring at the
monitor seems to help my corneas dry off. Usually within an hour or two my
eyes get functional enough to actually move on to my other jobs. I also
read that rapid blinking of the eyes might help the moisture go.
Muro ointment at night is my number one line of defense! Just before
bed, I get up close to the mirror, pull out my lower lid a little, squeeze
the tube until I have about a quarter inch line on my lower lid. Then if I
can remember not to blink, I make my way into the bed as fast as I can. If
I do blink, of course, I have goo over my eyeball, so then I feel my way
to bed as carefully as I can. If I forget the ointment at night, I am
always in big trouble in the morning. The ointment (which I understand is
a salt-based solution) keeps the cornea from building up so much moisture
during the night while my eyes are closed. It doesn't hurt or anything,
just gives me an adventure trying to find my way into bed after my eyes
are both full of goo.
Muro drops in the daytime never did help me much. They would sting. And
I never was much good at putting drops in, even after a Fuchs' Friend told
me to put in the drops and then shake my head like a dog. I was laughing
so hard doing all that shaking that the drops did get mixed in around my
eyes. Before that, they mostly ran down my face.
Another trick that never worked much for me was the hairdryer routine.
The point of the hairdryer is just to waft some gentle warm air around
your eyes. Put it on low and hold it away from you. Might help, might
not.
Here is a trick that does work, but it is REALLY REALLY ugly! Get up
earlier so my eyes have time to clear before I go to work. Equally ugly,
but works: sleep fewer hours. Less time with eyes closed seems to result
in less fog buildup.
One thing I have learned, I never never bend over if I need to keep my
vision clear. Bending over sends a cloud over my vision in 5 seconds
flat--then it takes me 5 hours to get rid of it. So I even have special
colors on the caps of the shampoo bottles, etc., in the shower so I don't
have to be digging around among hubby's to find mine. I won't even wear
shoes with laces. A quick velcro strap is as much bending over as my
vision can stand.
Anecdote: We have a member, Mary from Iowa, who wrote me once that she
never could figure out why it was always so foggy when she started out for
work, but it always cleared up by the time she got to Peoria. Gosh, I got
a big chuckle out of that one! Lucky for her, she could drive the back
roads to get to work.
Second Opinion
I've had altogether five opinions about my Fuchs'! Nevermind that one
doctor has now retired, another was filling in at vacation time, and
another was a retinal guy who called everybody in the office to see what
the Fuchs' eye looked like (I felt like charging them admission!). I'd say
the more any doctor will tell you about these things, the better. I like
to inform myself. I am aware of what the numbers mean about corneal
thickness, visual acuity, etc. Then when the doctor tosses out numbers, I
have a benchmark to use as to where my eyes fit in the scheme of
things.
I felt that I was trying to select a doctor as well as learning more
about my eyes. I soaked up everything the doctors told me, remembering
that I was also "Interviewing him for the job" of taking care of my eyes.
After I'd seen 3 doctors, I already knew which one would be the one to put
in care of my eyes.
I always want to know my actual vision, as in 20/40 or 20/70 or
whatever, because I want to know how that will compare with what my state
requires as far as drivers' license is concerned. But I DO NOT put it that
way to the doctor. I just ask him what is my vision, and can I get a new
eyeglass prescription that will improve my vision, and how much will the
new glasses improve the vision. As far as the other numbers, cell counts,
etc., I don't sweat that. I want a doctor who will explain things to in
plain English. I want the "bedside manner," a doctor who isn't just
shoving people through as fast as possible. It wasn't until I got to my
third and present doctor, over a span of years, that I left the office
saying, "This guy will answer my questions, he is telling me the truth,
and I trust him."
You have a right to get a copy of your medical records. Those should
name your eye disease and show you immediately if you have corneal
dystrophy or Fuchs'. If your doctor can't tell you the name of what you
have, get a second opinion. It seems too often our Fuchs' Friends have had
to almost beat the information out of the doctor.
If you have been advised by an eye doctor to have both surgeries and
you have some reservations about it, you can always get a second opinion.
Our Fuchs' Friends have three respected corneal specialists in different
parts of the country who are willing to give us the names of the best
corneal people they know in other areas of the country. I have lost count
of how many people we have hooked up with good corneal doctors.
Getting A Diagnosis
I was lucky enough that my own eye doctor was familiar with Fuchs, but
I did go to a specialist, anyway. My own doctor was not explaining things
to me and I was worried. Then when my own doctor found out I had gone for
a second opinion, he spent some time explaining Fuchs to me and got me a
pass to the Doctors' Library to read up on it for myself. Surely, if your
eye doctor can't tell you by a name what you have, it may be time to seek
a second opinion. One reason the doctor may not be telling you much is
that nobody knows how fast the Fuchs will develop in any individual
person. It is not possible to say, "It will get worse in two years" or
anything specific like that. It's a day-by-day thing.
There are several kinds of corneal dystrophy, and also several eye
diseases named after Ernst Fuchs. Ask the doctor exactly what you have.
Maybe the nurse will read it off your chart, the spelling and the notes.
Many of us "Fuchsies" were told little or nothing by our doctors until we
started getting insistent. There is a fine line between being too pushy or
being pushed around! If you get tongue-tied in the doctor's office, write
down your questions on a tablet of paper and take it with you to the
doctor. You might even hand it over to him and let him peruse the list.
That will take the pressure off you to remember what questions you wanted
to ask. But don't expect your doctor to have a crystal ball for you. The
reason the doctors don't give you a prognosis is that Fuchs' has a mind of
its own and can move slowly or quickly, and nobody can predict it.
You have a right to get a copy of your records from the doctor. He owns
the paper, but you own the right to have (or purchase) a copy if you live
in the US. There are several kinds of corneal dystrophy, so you'll want to
be sure what kind you have. I was diagnosed by an ophthalmologist, now
retired, then saw a corneal specialist, and now my current ophthalmologist
does take time to explain things to me.
If you have Fuchs' corneal dystrophy, there's probably not much to do
at the moment except wait and see. But if you know it is Fuchs' then you
will know enough to contact your doctor if something screwy happens to
your vision. I had Fuchs' for so long before it got really foggy that I
had totally forgotten what I had read about the cloudy stage! I called my
doctor and made a panic appointment. When he saw me, he said, "Oh, that's
just your Fuchs'. Here's some ointment to put in your eyes at night to
help out." Don't you love how the patient feels like his world is coming
to an end, and the doctor is like, "Just another day in the office." Don't
get me wrong. I love my doctor and realize it is his job to keep me calm.
Now I help my doctor by keeping MYSELF calm.
Personally, if I had any doubts about my willingness to take on the
commitment that a corneal transplant requires, I'd postpone and wait until
I could say, "Let's get it done!" with utter determination. That's because
I think attitude is so important in the healing process. That's just my
opinion. I think you should rely on a good corneal specialist to guide
you.
My Cataract Surgery
Our Fuchs' website has attracted people from all over the US, Canada,
UK, Europe, South America and Australia. They're at all stages of Fuchs'
and several have had transplants. Quite a number of us had cataracts
removed if our corneas were not yet very bad. I had one cataract surgery 8
years ago, and only just this year had the corneal transplant. It
completely depends on your own eyes and the doctor you are working with.
We did have a member who had the triple procedure last July, and she is
getting along quite well. When I get my second eye transplanted (at least
a year down the road), I am hoping they will be able to do both the
cataract and the cornea at the same time. I'm pretty well informed, and
the triple procedure makes sense to me, now that my cornea is in quite bad
shape. When my corneas were still good, it made sense to do the cataract
only, which is faster healing and almost overnight better vision, whereas
the cornea takes much longer to heal before you see results.
I had my cataract done about 8 years ago, and at that time my
ophthalmologist knew I had Fuchs' and told me it was possible that the
trauma (surgery) to my cornea would make the Fuchs' worse. We went ahead
with it, and my vision improved. Since both my eyes now have gotten worse,
I feel that the cataract surgery was well worth it. It gave me quite a few
more years of good vision, and now when they do the transplant, they won't
have to do the double operation (cornea AND cataract). I'm glad I got my
cataract fixed when I did. The Fuchs' in that eye is now not much worse
than it is in the eye they never touched.
Bob, the co-founder of our email list group Fuchs' Friends just had
BOTH his cataracts done this past summer. His Fuchs' is not as advanced as
mine. He is seeing beautifully now, and they managed to avoid damage to
the cornea.
In our Fuchs' Friends group, a few people had such advanced Fuchs' that
they got the double operation, and one who is younger actually got the
corneal transplant but not the cataract surgery. That seemed strange to me
until she told us her doctor's reasoning: by the time she gets older and
the cataract surgery is needed, the new lens will have a prescription that
will work better for her as an older person.
There is a certain amount of risk for a Fuchs' patient to get a
cataract fixed. It can cause some trauma to the cornea, and our corneas
are already in trouble. I had Fuchs' for several years before I developed
cataracts. They're separate things. The reason Fuchsies have a lot of
discussion about it is that although fixing a cataract can almost be done
on your lunch hour these days for normal eyes, we lucky Fuchsies have our
eye doctors concerned because the simple cataract operation may or may not
make our Fuchs' worse. So what is a simple deal for most people, we get to
have a big deal instead.
"What's Guttata"?
Yes, I know a lot about guttata. I've seen photos of it during lectures I've heard presented to Fuchs' Friends by Dr. Eiferman in Louisville, KY. Dr. Edelhauser also showed us slides when we met in Atlanta, GA. After you join Fuchs' Friends, you may look up guttata on our Members Only webpages. When you are told you have guttata, you probably have no vision symptoms at all, and you may never get them. You need to understand the anatomy of the cornea and the dynamics of Fuchs' dystrophy before you can understand guttata and its place in the whole scheme of things.
Glare Problems
The glare and glowing light shows from Fuchs' can make you think you've
lost your mind. I describe my stoplights at night as a bright colored
fuzz. The other night I was trying to look at the full moon and the light
around it looked like cracked ice. I wish I were artistic. I could paint
what I see. If you are at the "glarey" stage, bright terrains like snow,
water and desert sand will be no doubt a challenge.
The problem with Fuchs' is that even with things magnified, we can't
get the CLARITY because of the cloudy cornea. I found that driving with
the sun in back of me was better than driving toward the sunlight. Also
got a little help with grey-tint sunglasses because red stop lights stood
out better. I did a lot of memorizing of streets so I didn't have to read
signs. Also where stopsigns were located. It was a dicey way to drive.
After my vision became 20/50 and 20/80, I had to quit driving. Normal
vision for driving in Calif. is 20/40.
Here are some things our members have tried to reduce glare, with
various amounts of success. Wraparound sunglasses with grey, rather than
brown tone. Yellow Polaroid sunglasses. One member wears both at the same
time! An anti-reflective coating on their regular glasses. That's what
saved me for years.
Things That Aggravate
My Fuchs' Symptoms
To my knowledge, Fuchs' is an inherited problem, and other things that
happen to your eyes can be an aggravator of symptoms. From all the
experiences of the Fuchs' Friends group (and my own), I personally am
convinced that stress aggravates Fuchs' symptoms. Don't know whether or
not it accelerates the disease, however. One of my eyes is much worse, but
they both have it. When my bad eye is bad, I can usually count on my good
eye to get me through (still not good enough to drive). But today I was
having trouble with both eyes. It's hot & humid, and a stressful day,
all of which seem to cause problems for my Fuchs'. Our group has concluded
that a few other things that cause our Fuchs' to kick up are stress,
overtiredness, fatigue, injury (like a fall), illness, humidity, pool
chemicals, and sinus infections. I personally find that my eyes often
cloud over if I cry, laugh until I cry, tear up (eg have a sentimental
moment), or cough.
Glasses and More Glasses
My anti-reflective coated glasses have the coating baked right on. It
takes them about 5 or 6 days extra to make my lenses. I also have a tint,
darker at the top, and I use the big plastic frames to give my eyes more
protection from the glare. After I reached the foggy stage, the tint
became of less and less use to me. Then I was looking for more light and
trying to get the tint OUT of my glasses.
I seldom forget my glasses. I have those "old lady" strings hooked to
my sunglasses and reading glasses. Almost always have some glasses hanging
around my neck, sometimes two at once. People are getting used to me and
"My sense of style." I have a whole bunch of pairs of glasses, too,
because my vision changes from one hour to the next. Around my computer it
looks like the boneyard for dead eyeglasses!
Sun Glasses
To my knowledge, sunglasses don't prevent Fuchs' but will make your
eyes more comfortable when you are in the "glare" stage. Sunglasses may
also help prevent cataracts.
Here are some things our members have tried to reduce glare, with
various amounts of success. Wraparound sunglasses of all kinds, some with
grey, rather than brown tone. Yellow Polaroid sunglasses. One member wears
both at the same time! An anti-reflective coating on their regular
glasses. Sunhats, baseball caps, visors, anything to cut off the light
from above and the sides.
Magnifiers I Love to Use
I use a Bausch & Lomb approx. 6" diameter round hand-held magnifier
at my desk, and I carry a smaller one in my purse at all times. That one
has a rectangular magnifying glass about 2" x 4" and a handle. The larger
one is about $30 and the smaller one is about $10. I've tried lots of
other ones, but Bausch & Lomb are the least distortion-free for me. I
also keep a Tazor floor model with flourescent circular light around the
magnifier for my office, and once in a while I use it in combination with
my handheld to see something really small--like a sliver in my finger!
Heredity and Genetics
You can carry the gene for Fuchs' and never have it show up in your
lifetime! We carry the genes for Fuchs' all our lives, so in that sense it
is "always there," but it is not apparent in an eye exam if you are going
to get Fuchs until the first stages show up, which are called guttata.
Then it can go along for years before causing serious trouble, or it can
accelerate. Nobody can predict it, which is why the doctors tend not to
tell us too much. Because they don't know how it will go, either. Both men
and women can have Fuchs'.
I was certain that my Fuchs' came from my Czechoslovakian side of the
family, but I have found that people writing to me suspect it is Dutch,
Jewish, Irish, an Indian mix, Italian, Danish, African American, and I
can't even remember them all. But it sure looks to me like it is an
equal-opportunity disease. Those of us who have it are from everywhere! My
other side of the family is German-Dutch, but nobody in any part of my
family ever exhibited symptoms of Fuchs' that I can discover.
We have a member whose family is being studied by the Wilmer Eye
Institute at Johns Hopkins, Baltimore, and we just learned from him that
Fuchs' can be passed down through the men in the family as well as through
the women.
Nutrition
Some of our members have discussed that eating spinach and some
vitamins will help with the Fuchs', but I haven't read any research on
that. However, spinach may be good for you, so what can it hurt?
I referred your question about nutrition and Fuchs' to my co-moderator
Mike in Baltimore, MD. He has contacts at the Wilmer Eye Institute. He
made inquiries on this question, and posted the results on our Fuchs'
Friends message board:
===================
Date: Sun, 03 Dec 2000
From: "Mike"
Subject: Nutrition and Fuchs'
I recently sent an email to Dr. Jun (one of the doctors at Wilmer Eye
Institute researching Fuchs') with a question on how nutrition might
affect Fuchs'. First is my email to Dr. Jun.
Dr. Jun -
Recently, some members of the Fuchs' Friends site were discussing
whether any research had been published on how nutrition might affect
Fuchs'. Specifically, if eating such foods as spinach or carrots, or foods
high in certain vitamins, minerals, etc., might be of benefit, or
detriment, to slowing the progression of Fuchs'. Several members have been
told to eat specific foods, such as spinach, for other eye diseases, and
that piqued their curiosity about the Fuchs' angle.
Anything you can provide, even if it's an "I don't know" or "Research
has shown (or hasn't shown) ..." is greatly appreciated.
Mike
I received the following email in reply:
hi mike,
to my knowledge, no information has been published in the
scientific literature about nutrition and fuchs dystrophy. since we don't
really know what causes fuchs, it would be hard to recommend dietary
changes to alter the course of the disease. it seems harmless to go ahead
and do this or that, and if patients would like to try various things,
chances are it won't hurt or help. scientifically, unless things are
tested formally, we won't know if a change will affect fuchs for better
or, for that matter, for worse. some drugs that are tested have great
theoretical promise, but when tested scientifically, not only do they not
help a certain disease, but they may actually cause no effect, worsening,
or have side effects that are difficult to deal with. the bottom line is,
I don't recommend them because we don't know anything about them. however,
if a patient feels strongly about it, I wouldn't discourage it. I think
its sort of a personal preference sort of thing.
take care.
bert
jun
Research
Most people who are diagnosed have no idea what Fuchs' is, never heard
of it, and are scared out of their minds. As of now the transplant is the
only cure, but it has a success rate of more than 95%. Our support group
tries to alleviate the fear and help provide information. And we do follow
the research. There are several interesting experiments going on,
including a transplant that is much simpler. Young patients may reap the
benefits of that research.
You've got Fuchs'? First rule is "Don't Panic." We have people in our
group of Fuchs' Friends as young as their 20's, diagnosed as young as
their teens. If you could pick an eye problem out of a hat, you would want
the one you have. It is mostly slow-moving and fixable. I have been
through Fuchs' from beginning to end, and today I am seeing better than I
have for years!
There is work being done on a new type of corneal transplant, with
fewer stitches and faster healing. Dr. Robert C. Arffa, Allegheny General
Hospital, Pittsburgh, and Dr. Massimo Busin, a doctor from Italy, are pioneering
this simpler form of the corneal transplant.
Dr. Busin performed the first EKP (endokeratoplasty) in Italy in 1999. Dr. Arffa performed his first EKP in September 2000. Since then the field of eye surgery has blossomed with variations of the transplant that aims to replace the endothelial layer with minimum disturbance to the epithelium.
There are studies in Canada, Taiwan, and UC Davis in northern
California about getting corneal tissue to regenerate itself, or even
using donor tissue to get corneal tissue to grow. The problem with our
corneas, they don't repair themselves like an injury on some other part of
the body would do.
There are exciting new developments in corneal research and newer less invasive types of corneal transplant. Many of our Fuchs' Friends have had one or another of the newer procedures, DLEK, DSEK, and others. Join Fuchs' Friends and hear their incredible stories! Related links: Experts Share With Fuchs' Friends and Research and New Procedures
Fighting the Depression
When I first knew I had Fuchs' I was really upset. I recall that the
worst part of it was the feeling of being all alone and having nobody who
understood how I was seeing the world. Then after I went along for years
with no big problems, I sort of forgot about it. I just got used to the
sunglasses, etc. When the cloudy stage hit, I got upset and depressed
again. Now that I have the ointment and drops to somewhat control the
"fog," I'm back on an even keel. Sometimes I think of that line from
Byron, I believe it was: "My very chains and I grew friends. So much a
long communion tends to make us what we are." My Fuchs' and I have made an
awkward peace.
Any of us Fuchsies who faced the past week's humidity have been
miserable. I live in California, and our weather and my vision finally
cleared a bit, and suddenly I realized it had been almost a week since
I've been able to see my pet birds! That is scarey. And it's easy to get
depressed. But I try not to let stress and depression pull me down,
because stress always makes my vision worse! Better to use that energy
learning about my condition.
I know Fuchsies get frustrated. I have myself a short pity party
sometimes. When I get like that, hubby is supportive. For that I am so
lucky. I know many of those who have Fuchs' don't have someone to help
them drive or tell them if they have spots on their clothes or forgot to
put on one eyebrow. They tell us 1% of the people have Fuchs'. But the
general public doesn't want to hear us Fuchsies whining all the time, "Why
me in the 1%?" On the other hand, Fuchs' Friends will listen and give you
support, because they've been there, too.
I just think about hubby's mother, who had macular degeneration, and
how I would notice her in the kitchen doing things by feel and how we put
all her phone numbers in black marker pen, and now I am doing the same
things for myself. The difference is that hers couldn't be fixed, but I
have a chance to see again. It makes me feel kind of stupid to be
complaining about my eyes when I know what she went through. We with
Fuchs' are so much luckier than people with other types of eye problems
that are less forgiving and have no cures.
I'm in a support group called Fuchs' Friends numbering 1170+ and
growing. All of us went through periods of fear, anger, denial, and
depression. Most are feeling or have felt the same thing I am feeling.
It's comforting to know you are not alone with this frustrating eye
problem. We all know there are worse things. I came within a quarter of an
inch of dying from cancer. But I'm here to tell you, all the surgery,
chemo, loss of hair, you-name-it....none of it had the power to depress me
as much as this drat thing called Fuchs!
Keeping a Positive Attitude
After I had cancer and chemo, I decided that I WOULD take time to smell
the roses, come hell or high water. So I work a bit less than I used to,
and it gives me enough time to do things that bring joy to my heart. When
I could drive, I'd wander through craft stores, glass art galleries,
lapidary shops, places with aromatherapy. Now that I don't drive, I wander
around the Internet meeting wonderful people, visiting butterfly sites,
and all kinds of foolishness that makes me smile. I also have been writing
a lot more.
Fuchs' Dystrophy does give such erratic vision days. I can see clearly
one day, and the next day can be pea soup. It's a very frustrating ordeal,
and I myself have cried, screamed, and kicked the furniture (none of which
help, by the way). Have you seen the photo I took which looks like "My
Morning With Fuchs"? It is at Through a Glass,
Darkly and is the truest image I could give of what I see on a bad
day. My life is centered around using every trick in the book to get the
most "good days" and get my hands on the best corneal doctor in the area
to handle the rest.
Everybody in our Fuchs' Friends would rather have met one another under
different circumstances. Nobody wants Fuchs', and my heart breaks for what
each one is going through. Each one has a different situation and has to
make decisions they can live with. And none of the decisions are easy. Our
group is very valuable, I think, because people can share their pain and
their questions with others who are in the same boat and thoroughly
understand the agony of having Fuchs'. Even those who are just diagnosed
and may never face the end symptoms are scared to death. We only need to
be there for each other to support them in their trial and maybe along the
way they'll find some helpful information they wouldn't have found without
us. One member posted that her doctor said, "When you get tired of putting
up with the symptoms of Fuchs' then it is time for the transplant." I
became ready and willing to take the risks and commitment required for a
corneal transplant. You have to make your own decision, with your
doctor.
How will I handle Fuchs'? First, see if it gets worse. Second, resign
myself to a future without driving if worse comes to worse. Third, keep my
attitude positive, because there are still many wonderful things about
life even if only one eye can see them. I didn't go thru 4 cancer
surgeries and 225 hours of chemo and not learn something about
appreciating life.
Strangely, it was also my optician (a mere "eyeglasses fitter"), and
not my ophthalmologist, who helped me find a corneal specialist, and who
told me about getting anti-reflective coating on my glasses, and using
wraparound sunglasses and visors. None of these things improved my Fuchs'
but they certainly added to my comfort and quality of life! Since my
Fuchs' has gotten more cloudy, I don't need the wraparounds and visors so
much. The cloudiness keeps out the light to a great extent.
I also visited a retinal specialist. What a joke! He called everybody
in his office to come see what Fuchs' looked like. I should have charged
admission! The only good thing out of that visit was that he took photos
of my retinas, and they clearly showed that my bad eye had a very gray
coloration over the supposed-to-be bright orange retina. The gray was the
thickened cornea preventing his camera from getting a clear shot.
Fuchs' has that way of turning on the blues. Been there, done that. I
asked my corneal expert how do you know when it is time for the
transplant. He said that when you can no longer do the things you need to
do or want to do, then it is time. I've had Fuchs' for so long, and just
this morning I decided, "It is time for the transplant." I've been
thinking all day about my dear mother-in-law who got macular degeneration,
and there is nothing they can do about that--how lucky I am that I only
have Fuchs' and there is something they can do.
I am 63, and I think I am a good healer. However, any surgery is risky
so of course I am scared. As I understand it, the time you must wait for a
donor is quite short. There are plenty of corneas available. The healing
time is long, up to one year before your vision is improved. That's
because the cornea transplant requires stitches and in the process of
healing the cornea changes shape, causing the vision to keep changing.
And I'm dealing with this, "Hey, I'm the old lady in this scenario. I
used to watch people like me who couldn't see well and think, Well, that's
old age." There's a kind of combination of enlightenment and resignation
going on in my head. Funny, I'm not depressed very often now. Just trying
to figure out how am I going to get this to work, "strategizing for the
future."
A Sense of Humor is Essential
If you don't have a sense of humor... you better get another ailment!
People with Fuchs' Dystrophy have a lot of adventures. It's not for
sissies.
One of the fun things about having Fuchs' is that we all have these
weird Fuchs' Moments, and I must admit that we must be a funny group to
watch! People look at me funny when I burst out laughing at things I
"think" I see and. Like, how can you laugh at that? I say, how can I NOT
laugh at it? Surely you won't catch me crying!!
My Poem for My Fuchs' Friends
I have no need for kings or dukes.
I need my eye doc. I've got
Fuchs'.
I wake with eyesight full of flukes,
Clothes inside out, cause I've
got Fuchs'.
My driving earns me such rebukes!
Can't see that stop sign. I've got
Fuchs'.
My typos sure give folks the spooks.
It's hit and miss, 'cause I've
got Fuchs'.
Is that zucchini, or's it cukes?
My food's a mystery. I've got
Fuchs'.
But I have friends, my favorite kooks--
We help each other. We've
ALL got Fuchs'.
You think you are terrorizing your city with your driving? God
knows, all of us are terrorizing our own little part of the country. Maybe
we could all make a buck by putting out bumperstickers, "Fuchsie on
Board." That oughta confuse the heck out of 'em.
Fuchs' Friends helps get rid of that "all alone" feeling, and once
in a while somebody says something helpful, and a couple of them are great
humorists, and you know we need all the chuckles we can get when we have
Fuchs' Dystrophy.
Fuchs' is a tricky thing that plays by its own rules. I've had mine
for years. I try to remain philosophical, which is tough to do when you
are trying to see to cut your toenails. Who knows? I might get run down by
a beer truck at the corner of Main and Third before I ever need surgery!
(I find a little warped humor here and there helps me cope.)
This week my vision is just awful, and we are dogsitting for
friends. You know, it does scare me that the last time we kept this dog
for them, I could see enough to pick up after him on his walks. No longer.
R & I walk together and HE gets to be the grounds-keeper. Ha ha.
There's always a bright spot.
My vision is so bad today that it wouldn't matter if I cried or
bent over or did any other thing known to aggravate my Fuchs'--there is no
way my eyes could get worse. I am totally not streetable, nor even
footpathable. I'm in "pea soup" paradise today--if you knock a tennis ball
toward me today, you can kiss that sucker goodbye!
One good thing about Fuchs' is that you can always blame your
mistakes on your vision. LOL! We get away with all kinds of stuff.
Here ARE some advantages of having Fuchs'eye troubles:
1. Don't notice cat hair on the sofa
2. Don't notice the cat on the
sofa
3. Can't read the junk mail, but can enlarge the junk Email and
then delete it with a vengeance
4. When you knock over the statue of
David in the Museum, your friends cover for you
5. You can't see and
don't give a darn if your chin hairs are growing
6. You cut your
toenails by "A Wing And A Prayer." Ow! Darn!!!
7. Hugs get real
important, but seeing photos is a so-so deal.
8. Can't read the
newspaper and don't miss it a bit.
I will end this with maybe a smile for you. Not only do I have
trouble finding my eye to put in the drops, but I also have to draw my
eyebrows on with a brow pencil. The eyebrows never did grow back after I
had chemo. If you want to see a funny shaped eyebrow, you must see one
that has been drawn on a Fuchs' lady by herself. I never know what
expression I have come up with! I hope people don't think I am looking
surprised all day, or have one eyebrow arched. Keep your sense of humor
with this Fuchs'!
Loss of Driving
I drive 1 block around the corner from my house to get a haircut, pick
up stationery supplies or birdseed, but I would never drive at night or
get out onto our "Main street." Still, I work full-time as a Realtor and
keep selling houses. My husband does all the driving, however. We just
figure out our limits, I guess. The places I drive to I could easily walk
to within 5 minutes.
You can call the doctor's office and ask the nurse to tell you what
vision is on your chart. I never used to ask anything. Now I know that my
poorer eye was 20/80 less than a year ago and it's 20/200 now, and my
better eye is 20/50. Somehow that helps me cope, in a strange kind of way.
I knew I was having trouble driving even in daylight, hated left turns,
etc. Now I have learned that I need 20/40 to drive in California on a
regular license. Well, so no wonder I was having trouble!
I can't encourage you very much about driving at night. Very few of our Fuchs' Friends drive at night. It's just as you described it--one big
mass of glare coming atcha. When I did still drive at night, I took
surface streets, and only those I was familiar with. It still was a hassle
if a car came up behind me. I used to pull over and let him pass so I
wouldn't have those headlights back there.
Continuing to Work
I still work as a Realtor, but I stopped driving about a year ago. My
hubby and I decided we wanted to keep the real estate business going, so
he got his real estate license, too, and he does the driving and goes to
all my appointments, too. In fact, he's getting pretty good at the
business.
Sunday was really horrible as far as working in the real estate
business. I couldn't see the houses I was showing, prayed I wouldn't have
to write a contract, almost killed myself getting out of the car. I was so
seasick Friday, Saturday, and Sunday from skewed vision and bad depth
perception that I was almost nonfunctional if I had to move around at all.
Took me 4 meclazine tabs before 2 pm to continue the house showing. All
day my first concern was to pay attention to where I was walking so I
didn't trip and fall. We did find a house, and the buyer bought it. But I
knew after today that's it's time for the transplant.
I for one can tell you my income hit the skids when my eyes got really bad. Thank God my transplant healed well and quickly, so I was able to get myself back into the marketplace, but it's taking awhile to catch up. There are quite a few of us whose income was thrown for a loop because of Fuchs'. At Fuchs' Friends we've built an extensive website giving tips and leads to disability assistance for those of us who are disabled because of Fuchs' or who still have "non employable" vision after the T because there were complications that slowed down the healing.
Keeping Some of the Joy
For fun I have music, poetry, photography (autofocus camera), fragrant
flowers in my yard, lunch at the ocean, and glass art. I have a great big
computer monitor and I know how to magnify the print.
Since my vision started deteriorating, my creative writing and artistic
side are really kicking in. I find that I can see photos on the monitor so
much better than in real life. (I have a humungous monitor--it's 19" or
more). I've built a website where I cut loose with all things creative
To keep some of the joy, one of the things I do is take photos with
autofocus. I scan them so I can bring them up real big on my computer
monitor. It helps bring out what I am missing in real life. I also put
live roses on my scanner and then I can get a close-up view. Now I have a
digital camera and shoot crazy things like the sky. On a good eye day I
can bring up that photo and somewhat remember what blue used to look like.
And I am planting more fragrant flowers in my yard. Since my vision got a
little worse my sense of smell and hearing seem to have gotten more acute.
I listen to music and write poetry.
Hold onto the joy. It's just a waiting game. They can fix our eyes. I
know it's hard to keep from getting depressed, but I find that getting
depressed seems to make my eyes act up even more. I had five days in a row
with it just last week, including severe dizziness, and when I "cleared
up" Tuesday, I realized I had not been able to see my pet birds since the
previous Thursday. You can bet this Tuesday, Wednesday and Thursday I was
looking at everything like it was brand new. I am seeing my eye doctor next
Wednesday, and no kid ever waited for Christmas with more
anticipation.
Mostly I am resigned to my condition, but once in a while I still have
a hollaring session with God. Then when I have a good day, I say, "OK, now
I will thank you just as loud."
When To Get The Transplant
My eye doctor told me that when the Fuchs' begins to hamper my
lifestyle, then it is time to think about the transplant. Another Fuchs'
Friend said her doctor said when she gets sick and tired of putting up
with the Fuchs' symptoms, then it's time.
Do I need a transplant? I am a borderliner. It's not a very comfortable
place to be. I can no longer drive, but my job is selling real estate. So
hubby has to drive me. If I get the transplant now, I'll be out of the
real estate business while it is healing. I can't afford a 2-3 month
"vacation." So we're trying to groom hubby to take over my business. I'm
trying to get up the guts to just take the plunge. This is the first time
in my life that I ever hesitated to make a decision, even when they were
the wrong ones!
This morning I had a revelation that my work is indeed suffering
because of my vision, and that hubby is not able to pick up all the slack.
The stress is making him sick more often, and I'm sure not going to be
able to make a living in real estate the direction things are going here.
My ability to make a living was in jeopardy. So I said to Richard, "I've
had it!" and we picked up the phone and called Dr. Rundle's office for the
appointment. The big decision to take the risk at this point in time has
been made. One of you said your doctor told you, "When you get sick and
tired of putting up with the Fuchs' symptoms, then it's time." Well, I'm
there. I'll try to get it done during the holidays (slow real estate time)
so that when things pick up again in the Spring I'll be functional. I owe
a big "Thank you" to all the supportive people in the Fuchs' Friends
group,
A corneal specialist told me that the indications for needing the
corneal transplant are variable, depending on each patient's situation. If
the patient's lifestyle is impaired enough to decrease their ability to do
the things they need to do or want to do, then it is time to consider the
transplant. If the patient is a watchmaker and needs vision good enough to
do that work, the transplant may be needed sooner than it would be for
someone who is retired and doesn't need acute vision for detail work.
As to the criteria, the patient needs to be in good health, and there
are many opinions by many doctors as to when the transplant is needed.
Normal healing depends on whether the retina is normal, if you have a
good surgeon who does a good job, and if there are no complications such
as cataract, glaucoma, retina problems or macular degeneration. As to what
the patient's vision will be after surgery, that also is variable. In some
ideal cases the vision may be returned to 20/20, but most patients still
need to wear glasses. He said a patient who previously had 20/200 and was
improved to 20/40 was a success, for example.
As to whether the cataract and cornea should both be fixed at the same
time, the corneal specialist said it is PREFERABLE that the removal of the
cataract, implantation of the new lens, and corneal transplant all be done
at once. He said regular eye surgeons might want to do only one or the
other, but corneal specialists prefer to do both at once.
On the healing time, the specialist suggested I plan to take off a
month to six weeks as far as more strenuous activity. He said he would see
me frequently, and after a year he would take the stitches out. Then he
would check the vision and other problems like astigmatism. He did say
that some of the adjustments that might need to be made after the cornea
is healed can be done with Lasik surgery.
My regular ophthalmologist also does corneal transplants, and he said
the operation requires a complete commitment on the part of the patient.
He sees his transplant patients on an almost daily basis because so many
factors may be changing that could affect the outcome. I felt he was
telling me I could plan to put the rest of my life on hold while the
cornea was healing. He said the healing could take up to a year.
After the surgery I cannot lift, reach, bend, carry--duh, well, I guess
that pretty much lets me off the hook for Thanksgiving dinner and
Christmas decorating! In a corneal transplant, they actually use stitches
to hold the cornea in place, and if I pop a stitch, it can change the
shape of the cornea and mess up my vision. I also have to see the doctor
every few days afterward so he can watch for signs of rejection. Ah, I can
tell this is gonna be a barrel of fun..... But it will be nice to be able
to see again....
That's what pushed me over the edge--not being able to drive. My eyes
were 20/50 and 20/80, worse than the past year, not legal to drive in
Calif. Then this summer the 20/80 eye took a nosedive to 20/300. So it was
now or never. I don't have plans to do the other eye until this new one
settles out--probably a year or more. They really won't give you any
guarantees. They can't know for sure. But if the surgeon does his best
job, and I do my best job, we will hope and pray for the best result. If I
can get 20/40 so I can drive again, I will be happy. If it gets better
than that, I'll be tempted to dance on the roof!
I really wanted the DLEK for my second T Feb. 2003, but it was not to be. However, I want to put in a plug for the regular old-style transplant. The DLEK is new and wonderful, and it's the way of the future, I'm sure. But for an old gal like me, having both T's the old way has saved my life. You who have been around awhile know that before my first T in Nov. 2000, I had not been behind the wheel for 1 1/2 years! My hubby took me to
all my business appointments, etc. My second T did clear up the
foggies in the other eye and gave me enough vision and depth
perception to get back on S. California's crazy freeway system. And just in the nick of time. My hubby become ill July, 2003, and was gone Sept. 27, 2003. Then I had my third re-occurrence of ovarian cancer in Nov. I refused chemo this time, and down-sized
to a mobile home nearer the best friends who took care of me during the cancer surgery and post-op.I was driving down the 57
FWY a few days ago (from their house to mine), and I said out loud to myself, "What on earth would I have done if I hadn't had those two transplants???" As I negotiated my way through the nutty S. California interchange called the "Orange Crush," I was almost crying with gratitude that my vision was restored enough to carry on my life in tough circumstances. (Attention, Fuchies: After the transplant, you CAN cry without the repercussion of getting the foggies!) So if you can't have the DLEK for whatever reason, just be so grateful for any kind of corneal transplant that will give you back your life.
Post Transplant Care
The corneal transplant IS the cure for Fuchs' at this time, but there
is a lot to know about corneal transplantation. It is not as simple as a
cataract operation, which people can get done on their lunch hour and be
able to see in a day or so. The cornea is first of all a Transplant. So
there is the issue of whether the body will reject it. The eye doctor
needs to be watching your transplanted eye like a hawk, looking for any
number of changes that the eye is trying to reject, and then dealing with
those issues. Some of our members got into problems with their transplants
because they didn't get the follow-up attention required.
Now, assuming the transplant "takes," there are stitches involved in
this surgery. But in the eye, every little stitch can make a change of
shape that changes your vision. And the cornea takes longer to
heal--something to do with not as much blood reaching the cornea, I
believe. So after your transplant, your vision may fluctuate and not
really get better for 6 months or a year. Good
doctors let you know a corneal transplant is a full time commitment all
through the healing process. Some of our members have had good fast
healing. Some have had nightmares. Who's to say what was the difference?
For sure, pick an eye surgeon who is an expert AND will give you the
follow up time necessary. Even up to five years later. Every member of
Fuchs' Friends is eager to learn as much as possible about these
variables, so to better their own chances of success. And some of us are
postponing our transplants just a tiny bit longer, making ourselves ready
for that total commitment and hoping the technology will continue to
improve.
In our Fuchs' Friends group we have many transplant success stories,
but we do have a couple less-than-success stories. One member has a real
horror story about her transplant, and two others had surgeons who did a
fine job but the follow-up care was lacking to the point where problems
developed.
Even after a transplant, the stitches will cause spikes of light at
night. If the stitches are removed the surface of the cornea remains a bit
rough. My doctor says this could be corrected with contacts but I doubt
that I'll be much good at wearing contacts.
Yesterday my ophthalmologist told me that after the transplant I could
expect to have to see him on an almost daily basis, that many aspects of
the healing need to be monitored, and that I should plan to have my entire
life changed insofar as canceling trips, etc. As I understand it, getting
the transplant is a total commitment. I'm very glad I have an eye doctor
who will give me the post-transplant care!
Finding the Best Corneal
Specialist
Our group Fuchs' Friends is building a database
of doctors our members have recommended.
I went to the Internet and tried several cities for "cornea" specialists. All the
ones I tried did turn up names and information on the doctors we have
tracked down ourselves! The only hitch is that the list also shows other
corneal doctors in the area, given in alphabetical order. My concern is
always which doctor is running an assembly line or graduated at the bottom
of his class! I am convinced that the way to find the best corneal
specialist is to ask a good doctor for the name of a good corneal doctor,
or to ask happy patients the name of their doctor. Then use Eyenet to get
all the scoop on location, phone, etc. I never ask a doctor about another
specific doctor, because he might not want to say anything bad about that
doctor (even if that doctor's not good). But if you ask them the name of a
good doctor they know, they WILL give you a good one.
"I DO hope you can find an excellent corneal specialist who is not only
a good and experienced surgeon but also available for the essential
after-care. Before I found the specialist I see now, I asked two
optometrists I respected for a recommendation. I went to a good hospital
and asked their eye doctors who they looked to as examples of outstanding
specialists. I even asked my optician who was kind enough to ask several
of his optometrist friends for the name of a highly regarded corneal
specialist. When you start hearing the same name from several reliable
sources, you know you've hit the jackpot." (Eileen, member of Fuchs'
Friends)
Dorothy's Wild Ride
OK, my today's Fuchs' adventure. I have learned that my eyes are
generally better if I sleep only 6 hours instead of 8. Less time eyes
closed & lying down, I suppose. Don't know. So with an early
appointment, I did the "short night" thing and woke up with amazingly good
vision. After the apptmt, hubby got this brainstorm that the car needs to
go to the shop, and what a perfect time, when I can see well and follow
him in the other car. We take surface streets and I stay right on his
bumper. One small hitch, he got through a red light and I didn't. To make
a long story even longer, I was so darn scared when I found myself alone
at a busy intersection a few blocks away, that I hung a right and pulled
into the first parking lot I saw. I decided I would just sit there until
he called my pager. The stress of the moment brought an immediate fog over
my vision! I wanted my Mommy! Meantime hubby had turned another direction
but spotted me driving off into the sunset, so he wheeled around and was
able to see me go into the parking lot. Good grief, it was like the
Keystone Cops!
Slowly we made it to the radiator shop, and then I had a doctor
appointment for a routine check-up. Doctor noticed my blood pressure was
up. NO KIDDING!!!"
Fuchs' Friends have collected many stories of their "Fuchs' Moments," and we've learned to laugh with one another. I have a classic one of my own, "Dorothy's Royal Flush." Yep, it has to do with using the lavatory on an airplane! But you'll have to join Fuchs' Friends to read it.
How It All Started
I didn't start out to create Fuchs' Friends. I was just so frustrated
with having it and nobody to talk to about it, that I poured out my story
on a homepage I built in 1999 called Through a Glass, Darkly. I had
no idea that search engines would find me. I didn't know how to register
my page with them. Suddenly people began to write to me. One of them was
Bob from northern California, who knows a lot about the Internet. So
together we built an Official Fuchs' Dystrophy website and started a
private bulletin board/email list group. I am really happy that Fuchs'
Friends is such a support group for our members. And they were a
tremendous support for me. I think I would have been too terrified to have
a corneal transplant if I hadn't met Brad, Chris, Don, and Margaret, among
others.
Things have a way of working out for the best.
I think it's because someone else is looking out for us better than
we could for ourselves. When I lost my
sight to Fuchs' (I waited too long for my first Transplant), I was
depressed and upset beyond belief. It was years later that I saw a
bigger picture. Possibly I was destined to go through this trauma
because it was meant that I write up my story, put it on the
Internet, and have it grow into this wonderful group called Fuchs'
Friends. I didn't set out on that course, but somebody else was
using me to be the instrument to achieve a special goal.
Tribute to My Donor
Click for original MIDI "Visions" by Andy Klapwyk
DONOR
Did you live
As rich or poor?
Did you know
You'd be a cure?
Did you love,
Or were you sad?
Did someone call you
Mom or Dad?
Did your heart
Learn how to dance?
Did your life
Have its full chance?
Where did you walk,
What did you see,
Stranger who gave
Your eyes to me.
More of my More poetic takes on vision.
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Page updated July 15, 2005, by Dorothy
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Letters From Dorothy
