Feb 14
I did an unscheduled
appointment with my doctor. Last night I dropped my hand on my eye while
sleeping (DON'T ASK!), and this morning I had not only a Fuchy old eye,
but a wildly blurred transplanted eye, as well.
Good news. "No harm, no foul," my doctor said. I did not damage my
transplant. However, my astigmatism has changed 90 degrees, but it has
improved from 4.5 to 3.5. I will have a topographical map done Monday to
see which stitches should come out next. Doctor said this is the time to
do it, while the new cornea is still healing and molding.
My eye pressure was 27, up from the 12-18 I've had. Doctor thinks I may
be a "responder," ie. the cortizone (Pred Forte) eyedrops may be causing
the eye pressure to rise. I'm off the Pred Forte. In fact, all I am on now
is liquid tears. And he said use a lot of them. He doesn't want the eye to
dry out. My surgery was Nov. 14
Feb 16
I'm understanding the problem of the astigmatism during the
healing of the transplant. I can see fine--3 and 4 of everything! I've
heard it can take 6 months to 2 years for the vision to get settled down.
I'm going to have a topographical map of my cornea done so my eye doctor
can better see which stitches to remove next to lessen the astigmatism.
Feb 19
Today I had my eye mapped to help my doctor decide what
stitches should come out next. The machine that took this photo looks like
a "funnel of lighted rings." I was looking into the funnel, with many
circles of light lining the funnel. I stared into the center of these many
circles, kept my eye on the small center area, and the tech took a
picture. Fascinating. There were no eyedrops, no pain or discomfort. The
black and white shot that showed up on her monitor wasn't too clear to me
(vision not so hot today), but a colorful version was next to it showing
patches of green, red, blue, etc., like a weather map. The technician told
me nothing except that she would send the map over to my eye doctor.
Feb 20
One of our Fuchs' Friends once said she went through four
time frames during her transplant healing: months 1-4 optimism, 5-7
disappointment, 8-10 disillusionment and 11-present reality. From my
experience, that is right on target. I can feel myself already sliding
from optimism to disappointment. But that's only emotional. My brain is
still holding onto the end result, only 9 (NINE???) months away. Thank God
for my Fuchs' Friends support group. They keep me plugging away during
this long healing. To keep things in perspective, the vision I have today,
astigmatism and all, is better than the double-dose of constant fogs I had
before.
Feb 21
It's been a long day. I had that "cinder in the eye" I've
hear described by members of Fuchs' Friends. The artificial tears wouldn't
budge it, so finally I just crawled on the bed (sitting up so as not to
cloud over my Fuchy eye) and closed my eyes. Then it got better.
Feb 25
Good grief! It's been too long since I could "see" my
clothes. I just went digging through my wardrobe, and things I have been
wearing are a mess! I asked my husband, "How long have I been going off to
work looking like this?" Actually, he had been checking me out before I
went in public, but apparently not enough. My stuff was stained, nubbly,
and just plain shabby. We went straight to the mall and replaced some
jackets and slacks. And I realized that jewelry is going to be fun again.
Feb 26
I just had a call from my cornealogist (a term dreamed up by
one of our Fuchs' Friends). Based on the topographical map of my cornea
done last week, he wants me to come in Wed. for more stitch removal. My
multiple visions lately have been too-o-o-o-o much! I could tell when I
saw that colored map that something was "out of round." This corneal
healing/stitch removal is both an art and a science!
Feb 28
Using the cornea topography map (looks like a weather map
with rainstorms coming in!), my doctor clipped four holding stitches. The
map he showed me had a code, a bar of ranging colors along the right side,
showing that the dark blue indicates that part of the cornea to be flat,
and the more the color goes to red, the steeper is that part of the
cornea. My map showed the red and orange going horizontal and flared (like
a bow on a package), so the 4 stitches clipped were on both sides. Two of
the stitches he was able to remove entirely, but the other 2 were stubborn
and wouldn't come out, so he just snipped them. They will dissolve in
time. He is not messing with the running stitch at all. I'm back on Pred
Forte and Ocuflox (anti-inflammatory and antibiotic) for two days. The
really good news is my vision in the transplanted eye checked in
(uncorrected, through the pinhole thingy) at 20/40 minus 2! A great
improvement. And my eye pressure which had jumped to 27 because of the
Pred Forte (I am a "responder" to cortizone) is back to 16. So my new
anti-inflammatory will be Lotemax. Doctor said I should be seeing much
much better from the transplanted eye in just a day or so. Wow!
I'll try to get a copy of my topographical map to post here.
Mar 2
My itchies from the stitch removal are cleared up, and I am
astounded to see so well. My co-founder Bob says I don't even sound like
the same person! I am raring to go get out there and sell a house!! I was
ready to give up my work before I got this transplant!
March 14
Last year one of our members said she suddenly noticed
after having the transplant that instead of aging gracefully with a nice
gentle haze as she thought she was doing, now she had wrinkles popping out
all over the place! I had that experience this week. Not to mention
freckles or liverspots or whatever it is that we "mature people" have
earned. E-e-e-kk! And I'm not even gonna tell ya about the "discoveries" I
am making in my kitchen! Yuk!
I am relying almost entirely on my transplanted eye now, just four
months out from the transplant. This week, especially, with a cold and
lots of coughing, the Fuchy eye is almost useless. But the transplanted
eye is able to READ (using cheapie drugstore half- glasses). I'm getting
caught up on all the trade journals piled up in my bin for so many months.
It still astounds me to close one eye and then the other and see how
terribly bad my vision is in my Fuchy eye compared to the transplanted
one.
March 17
I've been sick almost a week with a cold and cough. My eye
is tired. But my vision is so good in the transplanted eye that I drove by
myself to the supermarket to pick up the corned beef and cabbage for
tonight's St. Patrick's day dinner. I have not driven myself out on that
busy street for almost two years! It felt new and strange, like I was out
on my learner's permit. But I got into the routine quickly. It's like a
miracle. I will be able to go back to work on my own now!
March 19
I AM DRIVING MYSELF EVERYWHERE!
Well, I haven't tried the freeway yet, but that's only because I feel a
little weird behind the wheel after almost two years
It was the 4 stitches taken out, based on the topographical map, that
improved my vision. I don't know my visual acuity (eg 20/40 or ?), but I
know I can drive once again. Alleluia!
March 28
Here is my corneal topographical map. It may not look like
much to you, but I have labeled it Dorothy's Miracle Map.
From that map my eye doctor could tell where he should remove stitches.
Today my vision checked in at 20/40 uncorrected and with only one-third of
a diopter of astigmatism. We will hold off on the glasses for now, because
I'm doing fine with nothing but cheapie drugstore half-glasses for
reading. We will not touch any more stitches for now. I will have
follow-up apptmt in two months. Doctor mentioned that 10 or 20 years ago,
the eye surgeons were told to get all the stitches out, but he said that
often created wild astigmatism. He and I are content to leave things
alone. It ain't broke, so no sense fixing it.
My doctor told me that he told the story about my eye pressure going so
high during the transplant, and that he had to do a vitrectomy. He said
the other doctors and professors never heard of that, and were glad it
never happened to them. I was thanking my lucky stars to have an eye
surgeon who was familiar with retinal surgery and knew how to do a
vitrectomy (taking some of the gel out of the eye ball). I was also glad I
didn't realize what he was doing!! My doctor thinks it was the local
anesthesia that caused the wild eye pressure during the surgery. We've
agreed that on the other eye, I will have a general. Now that I've told
you all chapter and verse about my first eye surgery, I can sleep through
the next one. LOL!
I also gave Dr. Rundle a thank you letter to forward to the eye bank
for my donor's family. He said he thought the family would be glad to get
that, and how hard it must have been for them to make a decision to allow
the cornea to be donated when they were under so much grief and stress.
April 15
My vision has continued to be wonderful in my transplanted
eye until today. We had a death in the family nine days ago, accompanied
by unbelievable amounts of anguish, exhaustion, and stress. I didn't
always have the chance to put in the Liquid Tears, either. Today I began
to have trouble focusing, but no pain. We still have two days to go before
the Memorial Service, so times are not easy yet.
April 18
Yesterday was very difficult, and we didn't get home until
midnight. But after getting a decent night's sleep, I noticed that my
distance focus has improved. I actually drove the car alone about 8 miles.
So I think part of my vision problem was my tired brain being unable to
pull together the input from my transplanted eye and my Fuchy eye. Or
perhaps it was somehow stress related. Either way, I'm relieved that the
transplanted eye is happy again.
April 19
Although my transplanted eye is back to more double vision
today, I DID have one more step of progress. Without glasses I was able to
pick through the various bottles of shampoo and conditioner in the shower,
find my favorite ones, and just luxuriate my hair! I had been using only
one bottle, the one with the white cap, because I couldn't read what was
on the other ones. I sure hated the stuff with the white cap. It smelled
like old cigarette smoke, I found it in a close-out bin, but the cap was a
color I could SEE. How subtle are the miseries Fuchs' puts upon us.
May 1
Sometimes when I'm out in public, I catch myself closing one
eye, and then the other to compare the vision, and wonder if other people
might be thinking I'm winking at them! One of my favorite ways to "nail
down" what my transplanted eye is seeing is to look at the little green
light on my computer monitor, the one that shows it is "on." Right now I'm
seeing triple, a ghost image to the left and another below. Almost eight
months out, and still vision shifting a bit, but constantly getting
better. I'm happy.
May 19
My transplanted eye is doing great. In fact, it is doing all
the work now as my Fuchy eye has had a bad month with the stress level as
we try to settle an estate in our family. Yesterday I only took artificial
tears 3 times the whole day long, and my new eye didn't even complain. I'm
6 months out from the transplant, and I LOVE MY NEW EYE!
May 30
I had a routine checkup today, 6 1/2 months out from the
surgery. I had no complaints, my pressure was 19, and I was so casual
about the whole thing that I forgot to ask how my visual acuity checked
out. Doctor said two of my stitches are becoming superficial, which he
said means they are coming to the surface. My next appointment is in 60
days, when he will remove them. He did remind me to call him immediately
if I had any of the RSVP symptoms of rejection (redness, sensitivity to
light, vision change, or pain). He said he could give me an eyeglass
prescription, but I said I could wait until the next time. My transplanted
eye sees distance very well, and for reading I wear cheapie drugstore
half-glasses. Glasses are useless for the Fuchy eye. The only reason I can
think of to get the glasses now is that my hubby says I don't look like
myself without glasses!
I am on only 1 drop of Lotemax a day (except for artificial tears).
Lotemax, is a substitute for the cortizone that was increasing my eye
pressure. I just realized that my hubby takes several drops a day to
control his glaucoma. One drop a day is duck soup. I can live with that.
Jun 9
We just finished painting and recarpeting our house. I wonder
if my donor eye is saying, "You didn't tell me I'd be moving furniture and
schlepping boxes of files only 7 months after the transplant!" I was
somewhat concerned about the fumes from new paint and carpet, and there
was a little "dryness" (similar to when I am around people who are
smoking). But the one thing I didn't ever lose in the moving around of
everything was my Tears Naturelle. They saved the day!
June 14
I am exactly 7 months out from the transplant, and yes it
was a nuisance with the eyedrops and special attention I had to pay to my
new cornea. But the trade-off is MORE than worth it. I got back all the
things I lost, the driving, the ability to work, the gardening, the
miniatures, and even things I hadn't realized I had lost, like the color
of blue in the sky and the way red really looks. I am thrilled with the
ability to see again, and when it's time for the other eye, I will more
than happily do all those pesky drops again.
July 16
For the past three weeks I have again developed a slight
astigmatism, which I can pin down by looking at the small green light on
my computer monitor. I have a slight "shadow vision" image to the left and
another one just below the real object. It doesn't bother me too much, but
I'm looking forward to getting a prescription for glasses in two weeks. To
sum up the healing process, I would say it is not a straight line from bad
vision to good vision. It's more of a meandering line.
August 1
Today I was minding my own business when the handyman said
to me, "Dorothy, what is wrong with your eye. It's all red." I said, in a
not-quite-hysterical tone, "WHICH eye?" Sure nuf, it was the transplanted
eye, all bloodshot in the corner. I called the eye doc who said to come in
NOW. We dropped everything and went. I could feel my heart in my throat in
the waiting room, reviewing my activities--was it the painting I did
yesterday, was it too much computer today, was it something I did wrong? I
recalled the Fuchs' Friends members who had gone through rejection
episodes and told myself my doctor will be able to handle it. What a
relief when the doctor said it was just a capillary that had burst, the
transplant was fine, and I didn't have to come back until Nov. 14--the one
year anniversary of my transplant.
About the question of whether the Fuchie eye gets worse after the
transplant, I asked the doctor what was my uncorrected vision today in my
transplanted eye (20/40) and what in my Fuchie eye (20/80). Now I know for
sure my Fuchie eye has gotten worse, because last Autumn that was my
"good" eye and was seeing 20/50. I told my hubby I was 20/80 because today
was humid, but he said today was not humid. I think I am making excuses
for my Fuchie eye.
Sometimes people write to me asking for an update on my transplant, and
then I realize it's been awhile since I did one. The reason for that is
now that I can see, I'm out there busily living my life again....and
loving it!
Aug 29
I went to my eye doc for my first refraction since the
transplant. My eye is doing so well that I almost forget to give it a drop
of liquid tears once in a while! I tested 20/30 on my T eye uncorrected,
and with correction it will still be 20/30, but with the astigmatism
improved. My Fuchey eye has dropped from 20/50 to 20/70 but can be
corrected to 20/40 unless it's a humid day. (and then forget it, 'cause
NOTHING will help!) The T eye doesn't need glasses at all except for
correcting the astigmatism, so I'm a pretty happy camper. I'm back to work
at break-neck speed. Things are going just great.
Sept. 7
Today I picked up my first pair of glasses, 10 months
post-op. My transplanted eye is around 20/30, and about the same with
correction. But the astigmatism is much improved with the glasses. I used
a pair of my old frames, but I had both lenses done without tint and
without anti-reflective coating, and in bifocals instead of trifocals. So
far they seem to be working pretty well. I like having my glasses back. I
was getting sick and tired of having reading glasses hanging around my
neck all the time. Look, Ma. No strings!!!
Sept. 8
A miracle day with my new glasses. Yesterday I was a little
discombobulated with the good eye and the bad eye trying to work together
(got a headache out of it), but today my eye adjusted to the glasses, and
I can see better than I have for 20 years! The Fuchie eye is somewhat
clear, and that side of the glasses is working for me. The transplanted
eye is just GREAT! I was walking through the grocery store today reading
all the signs way down the aisle, and I swear to you, it made me feel 10
years younger to be able to skip around in there.
Sept. 8
Today I was able to read through a contract of fine print
with absolutely no problem. My new prescription glasses work way better
than my cheapie drugstore halfglasses did (although they served their
purpose and were lifesavers for me all these months). I was so busy "doing
things" all day today that I forgot to use liquid tears from noon until 7
pm. Didn't notice the need for them. Of course, I still do take one drop
of Lotemax at bedtime, and of course Muro ointment in my Fuchie eye.
I won't be updating this story. I'll be too busy getting back to work
and living my life. I know I must always watch for the symptoms of
rejection. When I'm able to get the other eye transplanted, I will do it.
If the transplant ever fails, I'll just go ahead and get it done over
again. Until you've walked down this road, you cannot appreciate what it
means to have lost your vision and what a miracle it is to get it back
again--to get your entire life back again. Thank you to all the wonderful
donors out there, and to their families who in their time of grief are so
generous as to allow part of their loved one to live on and give back life
to someone else.
