Dorothy - I would be interested to hear how your eye is doing since your
corneal transplant - would you do it again, is it better than before, etc.,
Any advice you can give.  I am going to have my first transplant this fall
and I am really nervous about the whole thing.  Please tell me it is worth
it!


[Non-text portions of this message have been removed]

A message belongs to the "young" gal of  66 who will have the operation soon.

I will have a thought for you. As you say with support it`s easier to go through
everything.

Bye Bye

Caro









---------------------------------
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup

[Non-text portions of this message have been removed]

Hi there Fuch's Friends - I am a "young" gal of 66 and was diagnosed with
Fuchs Corneal Dystrophy about 12 years or so, and have done very well until
about 3 years ago, and then vision got cloudier and headlights had halo's and
sunlight is very hard to handle.  On top of this, I have cataracts in both
eyes and thus have a dual problem.  I am with an excellent optomologist who
deals mainly with corneal transplants, and it looks like the 1st eye will be
transplanted in October (if I work up enough courage).  I am a widow of 8
years so this is hard to handle too = alone!  But I have an excellent support
system in my 4 kids and they are strongly encouraging me to do this as I am
getting more dependent on rides etc., and they all have decided I am just too
young to be housebound!  Ha Ha.  So I am praying for good results and thanks
to Dorothy's excellent story about her corneal transplant, I feel that I am
well informed as to what will happen before & after.  But it is a scary scary
thing  and one wonders will I be better off or worse after the surgery.  I
pray and pray and pray and try to keep the faith in the surgeon and the
wonderful things they can do in medicine today.


[Non-text portions of this message have been removed]

Hi Dorothy

Thanks a lot . I`m happy to know that is just eyedrops that I will have to get.

Excuse me if my questions sounds frivolous , but my mother had to take some
cortison for some months, and you could not imagine how her face and body
swollen.but her it was pills.

But for sure swollen it`s a small problem compares to vision problem.I know that
well.When It will be the time to have it , I will.

Thanks again for the answer .You`re vry nice.

Caro



---------------------------------
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup

[Non-text portions of this message have been removed]

Caro, the steroids you take for a period of time after a transplant are
EYEDROPS. I never heard of an eyedrop that made you gain weight. I continued
to work very hard after my transplant, but I didn't lift anything heavy for
a month or so.  There are other kinds of hard work besides physical
activity. I guess you have to decide whether you are losing your vision back
or not, and what are you willing to do to get your vision back. If you
haven't lost your vision, then you don't have to worry about all the
questions. If you are in danger of losing your vision, then you get a whole
new perspective on what life is all about. Things like makeup and waistline
size don't mean much if you are losing your sight.
Dorothy

----- Original Message -----
From: "carole servant" <caroguitarist@...>
To: <fuchs_corneal_dystrophy@yahoogroups.com>
Sent: Thursday, May 30, 2002 8:14 PM
Subject: [fuchs_corneal_dystrophy] medication


>
> Lately I`ve known that after a corneal transplant we have to take cortison
, steroid or both.
>
> And what`s more if the healing is long , that means we cannot work hard or
exercise in addition to have to take that medication.
>
> So do we gain weight with that style of life :-)  I`m worry about that.
>
> Caro

Thanks for your help!!!

Doug, I will forward your question to Moderator Mike. You're caught in the
Yahoo Snafu, and nobody better than Mike to get you unsnarled. Hang in
there. Mike is on the east coast and probably can't get this smoothed out
until after work tomorrow night.
Dorothy

----- Original Message -----
From: <dwalt75090@...>
To: <fuchs_corneal_dystrophy@yahoogroups.com>
Sent: Thursday, May 30, 2002 8:14 PM
Subject: Re: [fuchs_corneal_dystrophy] Re: New Diagnosis


> Dorothy,
> I am a member of Fuch's friends.  I cannot get past the home page for FF
> though.  How do I access the message boards, chat room and such?  If I go
to
> the homepage it asks me to fill out another request to be a member.....
> help!!!
> Doug

Good question!!!  Shouldn't the frustrations  at least have an upside such as
weight LOSS?   I don't need another problem.  :)

Dorothy,
I am a member of Fuch's friends.  I cannot get past the home page for FF
though.  How do I access the message boards, chat room and such?  If I go to
the homepage it asks me to fill out another request to be a member.....
help!!!
Doug

Lately I`ve known that after a corneal transplant we have to take cortison ,
steroid or both.

And what`s more if the healing is long , that means we cannot work hard or
exercise in addition to have to take that medication.

So do we gain weight with that style of life :-)  I`m worry about that.

Caro



---------------------------------
Do You Yahoo!?
Yahoo! - Official partner of 2002 FIFA World Cup

[Non-text portions of this message have been removed]

Hi, Andrea,
You have stumbled into our public YahooGroup about Fuchs'. This place
is not Fuchs' Friends, so you might want to post your message to the
Fuchs' Friends message board, too.

This is a good excuse to write a message about how lucky we are to
have Fuchs' Corneal Dystrophy rather than macular degeneration. My
dear mother-in-law had MD, also, and it was heart-breaking to watch
her lose her sight. I've heard they are working on research to help
MD patients. We with Fuchs' have a curable problem, even though the
cure will require all the patience you can muster. Many Fuchs'
patients can regain their sight by a corneal transplant. But it's not
an "instant cure," and you need to work closely with your eye
professional. Don't second guess, but do exactly what he/she tells
you. If you want to know about a corneal transplant, visit my
website "Through A Glass, Darkly" at http://www.fuchs-dystrophy.org
Dorothy in Calif.

"Andrea" wrote:
> I am another novice in this world of eye disease - so far, I do not
have much of any symptoms and almost wonder if it is a correct
diagnosis - just some feeling of eyestrain -
>
> I have really appreciated your website, it is reassuring - my
father had macular degeneration and struggled with blindness from it
in his last years, so the idea of being blind is really frightening
to me

Hi, Caren,
It is true that Fuchs' can move very slowly and may never cause you a
serious vision problem. But sometimes it picks up speed, and that is
when you need to be aware of what these vision changes mean and what
are your options. My vision got cloudy when I was 60. Is that
considered "very old"? [female indignity cropping up here. LOL!]
Anyway, I still work quite actively, and I was able to continue my
work after having a corneal transplant, a surgery not to be taken
lightly because of the very long healing time and patience required.

You can join a private support group by going to this website:
http://www.fuchs-dystrophy.com and looking for the "Join" button.
That group has over 520 members in all stages of Fuchs', so if you
want to compare notes, check it out. The private group calls itself
Fuchs' Friends. It's been in existence for over two years now, and in
the 18,000 messages the members have posted, I have never heard of
the Hudson-Stahli line. You might try typing that into a good search
engine and see what you can find out about it.
Dorothy in Calif.

Caren wrote:
I have to say that I was essentially
> asymptomatic until a regular eye check when it was picked
> up as an abnormality and the Optician referred me to a specialist.
I
> can only describe it as having been 'aware' (gritty uncomfortable
dry)
> of one eye more than the other but now can see that it has been an
> insidious condition.  He has told me that it is a common disorder
and
> the worst that can happen is that my eye/s become 'cloudy' by the
time
> I am 'very old' Also there is a Hudson-Stahli line across the lower
> 1/3 of the corneas, do these things normally go together?
>
> His actual words are:
>  'Bilateral Fuch's endothelial dystrophy. This condition is fairly
> benign and seldom causes significant visual impairment'.
>  'Bilateral corneal epitheliopathy secondary to tear dysfunction'.
>
> Having read some of the info on Fuchs' Dystrophy it would appear to
be
> a little less 'benign' than he would have me believe but I don't
want
> to look on the dark side (sorry, no pun intended at all!) but would
> prefer to know what 'could' eventuate.

I am another novice in this world of eye disease - so far, I do not have much of
any symptoms and almost wonder if it is a correct diagnosis - just some feeling
of eyestrain -

I have really appreciated your website, it is reassuring - my father had macular
degeneration and struggled with blindness from it in his last years, so the idea
of being blind is really frightening to me



[Non-text portions of this message have been removed]

Hello Again

Thanks for that Steve/Chuckles.  I have to say that I was essentially
asymptomatic until a regular eye check when it was picked
up as an abnormality and the Optician referred me to a specialist. I
can only describe it as having been 'aware' (gritty uncomfortable dry)
of one eye more than the other but now can see that it has been an
insidious condition.  He has told me that it is a common disorder and
the worst that can happen is that my eye/s become 'cloudy' by the time
I am 'very old' Also there is a Hudson-Stahli line across the lower
1/3 of the corneas, do these things normally go together?

His actual words are:
  'Bilateral Fuch's endothelial dystrophy. This condition is fairly
benign and seldom causes significant visual impairment'.
  'Bilateral corneal epitheliopathy secondary to tear dysfunction'.

Having read some of the info on Fuchs' Dystrophy it would appear to be
a little less 'benign' than he would have me believe but I don't want
to look on the dark side (sorry, no pun intended at all!) but would
prefer to know what 'could' eventuate.

Thanks again for your help and info.

Caren

Yes for sure. And it`s on that site that I`ve read about your story.
Now I`m still worry , but seen that you succeeded to go throught that
kind of operation, makes me feel more comfortable with the idea .

Thanks  a lot for your support
Caro
--- In fuchs_corneal_dystrophy@y..., "Dorothy Acton" <dcacton@e...>
wrote:
> Hello, caroguitarist,
>
> Have you found the website called "Through a Glass, Darkly"? It's
here:
> http://www.fuchs-dystrophy.org/
> That is my own story about my journey with Fuchs' Dystrophy, in
great
> detail. There is also a booklet about it that you can order.
>
> Have you heard about the private YahooGroup called Fuchs' Friends?
It has
> 520 members from all over the world, and when you have 520 Fuchs'
patients
> sharing their experiences, you learn more about Fuchs' than you
would ever
> dream. To request to join, go here:
> http://www.fuchs-dystrophy.com./
>
> Dorothy in California
>
> ----- Original Message -----
> From: "caroguitarist" <caroguitarist@y...>
> To: <fuchs_corneal_dystrophy@y...>
> Sent: Saturday, May 25, 2002 9:24 AM
> Subject: [fuchs_corneal_dystrophy] Re: Fuch's progression
>
>
> > I`ve known on March that I have the Fuchs` syndrom. As you I want
to
> > know what is the progression of this syndrom and is it long before
> > I will see nothing. Cause I`m really scared about that. The
surgeon
> > told me that he will wait until I see nothing before he perform a
> > cornea transplant.
> >
> > For me the future is worring.

I agree about the future.  Things seem to be progressing pretty rapidly for
me...or maybe it's because I'm more aware and watching for signs.  It's just
all so frustrating.

----- Original Message -----
From: Carole Servant
To: dorothy@... ; inlow@... ; tomwri@...
Sent: Saturday, May 25, 2002 1:05 PM
Subject: Fuchs`syndrom


Hi Dorothy ,
I`ve just joined the Fuchs`friends. I `ve read a lot of messages on the Forum.
I`ve known on March that I `ve the Fuchs`s syndrom. The future is worring ,
cause I dont know at all what will happen to me.
The surgeon told me that he will wait until I dont see nothing before perform a
corneal transplant. Cause for the moment my sight is good enough.
But often I have to blink a lot to see well. It has been  like that for about 2
years or maybe more. At first I didn`t know what it was. But for sure I knew
that it was not normal. Now I know. It is surely one of the Fuchs`symptoms. Is
it ?
Can we leave a normal life after a corneal transplant. Do we have to stop
everything
for long ? If yes, for how long ?
For woman do we have to give up eyes makeup for ever after the transplant ? Or
maybe we can makeup after few months ?
Can we have a shower ? Is it dangerous if some water or soap go into eyes. Can
we
have a hair color ? Or is dangerous ?
Can we exercise after that ? How long after ?

Excuse for so much questions but I`m really worry. And after having read your
story
I think that you are the best person to answer me.

I also read that half of a family could be affected by the Fuchs`syndrom . I
have 2
sisters. Is it better for them to go see the ophtalmologist to know what is
going on for them ? One is 5 years older than me, the other is 7 years younger.

Thanks a lot in advance
Caro


[Non-text portions of this message have been removed]

Hello, caroguitarist,

Have you found the website called "Through a Glass, Darkly"? It's here:
http://www.fuchs-dystrophy.org/
That is my own story about my journey with Fuchs' Dystrophy, in great
detail. There is also a booklet about it that you can order.

Have you heard about the private YahooGroup called Fuchs' Friends? It has
520 members from all over the world, and when you have 520 Fuchs' patients
sharing their experiences, you learn more about Fuchs' than you would ever
dream. To request to join, go here:
http://www.fuchs-dystrophy.com./

Dorothy in California

----- Original Message -----
From: "caroguitarist" <caroguitarist@...>
To: <fuchs_corneal_dystrophy@yahoogroups.com>
Sent: Saturday, May 25, 2002 9:24 AM
Subject: [fuchs_corneal_dystrophy] Re: Fuch's progression


> I`ve known on March that I have the Fuchs` syndrom. As you I want to
> know what is the progression of this syndrom and is it long before
> I will see nothing. Cause I`m really scared about that. The surgeon
> told me that he will wait until I see nothing before he perform a
> cornea transplant.
>
> For me the future is worring.

--- In fuchs_corneal_dystrophy@y..., "dwalt75090" <dwalt75090@a...>
wrote:
> I would like to talk to others regarding the progression of FD.
Iam
> experiencing frustrating days of fogginess and unpredictable
sight.
> I'm finding it hard to work and carry out a busy schedule while
> contending with the unpredictableness of FD.
> I would appreciate any tips... findings ...etc!
> Doug

I`ve known on March that I have the Fuchs` syndrom. As you I want to
know what is the progression of this syndrom and is it long before
I will see nothing. Cause I`m really scared about that. The surgeon
told me that he will wait until I see nothing before he perform a
cornea transplant.

For me the future is worring.

Hi, Doug,
Have you applied to join our private Fuchs' Friends message board? That is
where 520 of us exchange information about our Fuchs' situation, and we have
dozens of private webpages about timetables, symptoms, tips, and
you-name-it. The sign up form is here:
http://www.fuchs-dystrophy.com

For AOL
<a href="http://www.fuchs-dystrophy.com">Click on Request to Join</a>
Dorothy in Calif

Doug wrote:
> I would like to talk to others regarding the progression of FD.  Iam
> experiencing frustrating days of fogginess and unpredictable sight.
> I'm finding it hard to work and carry out a busy schedule while
> contending with the unpredictableness of FD.
> I would appreciate any tips... findings ...etc!

I would like to talk to others regarding the progression of FD.  Iam
experiencing frustrating days of fogginess and unpredictable sight.
I'm finding it hard to work and carry out a busy schedule while
contending with the unpredictableness of FD.
I would appreciate any tips... findings ...etc!
Doug

Hi, Caren,
You'll be wanting to join our private YahooGroup "Fuchs' Friends,"
I'm sure. We have tons of information there, and we share the
experience of Fuchs' with 512 members from all over the world. Visit
this webpage to join Fuchs' Friends.
http://www.fuchs-dystrophy.com/Polls/html/join_fuchs__friends.html
For AOL
<a href="http://www.fuchs-dystrophy.com/">Click on Join</a>
Looking forward to seeing you there.
Dorothy in Calif.

--- In fuchs_corneal_dystrophy@y..., "petcaren" <petcaren@x> wrote:
> Hello, I have just been diagnosed as having this particular
> problem and am naturally interested in what it's all about. I don't
> spend much time on here but will pop in when I can. Look forward
> to catching up.
>
> Caren

Hi Caren in NZ:
FD is thought to be a genetic disorder.
I became aware of it about 15 years ago
when I developed a painful blister on my
left cornea. It seems as though the cells
in the cornea begin to disappear, disolve.
or deteriorate.Unfortunately, we're all born
with a certain amount of these cells and as
of now we don't "grow" new ones. Perhaps
with stem cell research it could happen.
I've been avoiding a transplant by using
sodium chloride opthalmic ointment and drops
to clear out the build up of water behind the cornea.
A healthy eye uses the cornea to "pump" water
in and out of the cornea, but an FD cornea(s)
need help, thus the ointment and drops.
As you probably know vision is poorest in the AM and
gradually clears later in the day. I depend on
polarized sun glasses which i also use
to watch TV. The sun's glare is a problem for me
especially that I live in Florida. Please let me know
if I can offer anything more.
Steve

__________________________________________________
Do You Yahoo!?
LAUNCH - Your Yahoo! Music Experience
http://launch.yahoo.com

Hello, I have just been diagnosed as having this particular
problem and am naturally interested in what it's all about. I don't
spend much time on here but will pop in when I can. Look forward
to catching up.

Caren

Hi, everybody,
Because we have been bombarded for the past 10 days with computer
viruses, I have shut down the ability to add attachments to our
messages so that viruses cannot drop in along with your messages to
this group. This is a good time for you all to get a good virus
protection program and keep it updated. It's dangerous out there....
Dorothy in Calif.

Hi, everybody,
I changed the settings here so that your name as a member will not
show to anybody who just wanders in. I thought that would be
important for your privacy. The only ones who can see the list now
are Moderator Thomas in Australia and me, Dorothy in Calif.

We also have a chat feature here. We use it a lot in our private
support group, with 490 members now. Here we have 22 people, so if
you want to chat, either post a message what time you'll be there and
see if anybody is available, or better yet, go join the private group
called Fuchs' Friends. They have chat sessions twice a day there. Go
to
http://www.fuchs-dystrophy.com and click on "Join"

Dorothy

Hi, Al,
You've wandered into our small public Fuchs' message board instead of
the huge private one. But never fear, answers are here! LOL!

None of the 500 or so Fuchies I've heard from ever mentioned having
their eyes taped at night, but JMAN once said he had a disease that
they used to call baby doll eyes, where the eyelid doesn't close all
the way when sleeping, so the eye tends to dry out. He used some type
of gel liquid tears to counteract it.

Someone else in the group mentioned that their eyes didn't close
tight when they were sleeping, but I can't remember who it was. Post
your question over at Fuchs' Friends and you'll probably get more
answers.
Dorothy in Calif.

Al wrote:
> Hi to everybody out there. Just a quick question...has anyone ever
> been told about taping their eyes closed at night in order to
prevent
> corneal erosions? Back in '83 when I was dx'd with Fuchs, my
> ophthalmologist recommended this and this has helped me stay out of
> the O.R. until I had my T (left eye) in 1998. Just wondering.

Hi to everybody out there. Just a quick question...has anyone ever
been told about taping their eyes closed at night in order to prevent
corneal erosions? Back in '83 when I was dx'd with Fuchs, my
ophthalmologist recommended this and this has helped me stay out of
the O.R. until I had my T (left eye) in 1998. Just wondering.

Thanks for all of the great information and good health to you all.
Al Gallo

We even have printed literature out now! So if you have Fuchs' or
have a loved one who does, join our private message board here at
YahooGroups. We have 485 Fuchs' sufferers there, 72 people who have
had corneal transplants, and we're the best support group around.
Request to join our private group here:
http://www.fuchs-dystrophy.com
Just click on the Join button, and you will receive your invitation
shortly.
For our printed literature, visit
http://www.fuchs-dystrophy.org/fuchs_dystrophy_support.html

Dorothy in Calif

Those of you who participate in our YahooGroup only by individual
email or daily digest may not have seen this message at our group
website:

"Groups will be down for scheduled maintenance Friday Mar 15 9PM PST
(GMT-8). We expect to restore service the morning of Sunday Mar 17."

During this time no messages can be posted, nor email sent or
delivered. Just didn't want you to think it was your computer's fault.

Dorothy