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Photo taken several months after I received the
transplant referred to in this "diary". You can
easily see the stitches in the eye. The
yellow coloring is from a dye the eye dr put in.
Hi! My name is Karen and I live in the United States in the state of Wisconsin and was born with the genetic eye disease Fuchs' Corneal Dystrophy. I was lucky enough that I didn't have the blisters, but my Fuchs' Dystrophy was so bad by the time I was 47 years old that I had to have a cornea transplant (called a "T" in this report) on Dec 6, 2001. My vision at that time was 20/70 corrected (that was the best they could do) and 20/400 uncorrected. I could no longer read or watch tv. I had been "legally blind" for many many years. I had to have the other eye done when I was 48 years old on Dec 16, 2002.
An eye with corneal dystrophy before and after a T:
When I had my first T I kept an almost daily "diary" of what was happening. This diary continued to the point past where I had a rejection of the cornea. Then, after that was resolved, it skipped ahead to 2004 where I reached the next big hurdle in the 2 T's. This is my story, from before the surgery, explaining the surgery, through the ups and downs of the healing time, through a cornea rejection, to 2004 where, finally, I can SEE... yes, SEE! No problems driving at night with 20/20 vision!!!
Karen P's Story
Karen P's Story
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Date: Sun Dec 2, 2001 9:43 pm To the tune of "Take Me Out To The Ballgame" It will be here real soon now, Good thing they knock me out And now, I am worried and frightened 'Cause it's: TWO THREE days to go for my brand new eye! Karen P. Date: Tue Dec 4, 2001 3:58 pm Just got the call I was waiting for....they say there is a cornea there waiting for me....I'm all set for Thursday...I'm supposed to report in to the hospital at 10:30 am cst with the surgery scheduled noonish cst....they expect me to be back home between 3 and 5 cst....They originally told me that even though they use the eye bank there was always the outside chance that there wouldn't be a cornea there for me and that they'd call me to let me know. Everything's a "go" and the light is green...let's go! Date: Tue Dec 4, 2001 7:40 pm Hey everybody..I want you all to know I'm not afraid of the surgery...(maybe the thought of the recovery still unnerves me a litle)...I know I'm in God's hands!.....and I know my best friend Judy will be there in spirit holding my hand... what have I to be afraid of???? Thanks everybody...I'll definitely be in touch when I get back...either me in actuality or through Judy...
Date: Thu Dec 6, 2001 9:25 am Hey everybody From: Judy Hello Everyone, I've just talked to Karen. The cornea transplant went well, but the Dr. feels there is something more wrong with her eye. He is going to do some more checking in the morning when she goes back for post-op check up. He mentioned keratosis (sp). I'll have to do some checking on this one, I don't know what it is. She will post her own message later...she can't wear her glasses with the patch and isn't able to see the screen. I'll be talking to her again later tonight after I get home from a meeting. I want to thank everyone for the support, love and prayers for Karen. I know it meant a lot to her. Thank you, Judy/NM Date: Fri Dec 7, 2001 9:34 am Hey everybody! No bad news today... all good news so far! The dr. said yes, the cornea was real "flobby" and moved around more than usual, but he didn't think it was anything to be concerned about and said it wasn't whatever he said he thought it was yesterday. I hope that makes sense...it was hard to know how to write it. Anyway, that nasty patch is off (until I go to bed)...there's nothing over my eye at all now...it's real watery and kind of scratchy but not sore. When they took the bandage off they said I had a broken blood vessel in the top of the eye and another in the bottom, but they don't hurt...just look bad and the tears are a little "bloody". Anyway, he covered my fuchy eye and asked me what I could see on the chart....I almost jumped out of the chair! I could see the big E, and the next E on its back below it! I also could see my mom holding up two fingers in the back of the room...true, it's not a large room, but STILL! and that was without the glasses with the fuchy eye closed. My vision has been on and off on the way home, watery, etc.... We tried popping out the lens of the glasses but everything looked double and triple vision then...they said using the glasses with the one lens too strong was ok as long as it didn't bother me. I have 2 types of drops to use, both 4 times a day: breakfast, lunch, dinner, and bedtime...and this first time I didn't taste anything from them. I still have a lot to tell you about tomorrow, but I ran right over to the computer as soon as I got home to tell you the good news!!!! I'M BACK!!!!!!!
Date: Fri Dec 7, 2001 6:27 pm Hey everybody! I had to be in at 10:30 am with the surgery scheduled for noonish. After the usual questions, and testing of current vital information, they told me to put on one of their "open air" gowns...top only thank goodness! They gave me 2 pills to take because I have a mild reflux problem...one pill was to settle the stomach before and after and the other was to dry things up. Then they started the drops...my the drops....they burned....and they kept coming every couple of minutes, or so it seemed. One type was to constrict the eye, one was to soften the eye, and one was anti-infection. Then came the ball... They put a band around my head with a ball on the end.. The ball pressed on the eyelid to "soften" the eye more. I asked how it could soften it through the eyelid and found out that it was supposed to be just the pressure of the ball itself that did the job! That had to be on for 1/2 hour. Then they tried to attach the IV....goot luck! They thought they had a "good one" but after poking and poking and poking they gave up on it and tried the other hand....finally they gave up on the hands altogether and looked at the inner elbow...still nothing... so in came a specialist who felt inside the elbows for a spot...not be look but by feel.. finally found one and OK..there it is..we're in business! Then the anaesthesiologist (sp?) came in to talk to me....and then it was time to be wheeled in...The doc came in and asked if I was ok..I said I had a question... He said "ok..one question...you get ONE question...give me your best ONE!" So I asked him, if I need antirejection drops after, how could I keep the patch on from noon thursday until Friday morning without any? He said it was because he gives me a shot for that. The next thing I knew I was waking up in the recovery room. I was supposed to feel the nurse pressing on my throat when I was going out, but I didn't...I was out like a light! When I woke up I was alone...I heard them talking to patients on either side of me. After a couple minutes I felt pretty good...except my throat! They brought me some toast to eat after I dressed (no wheelchair...walked all the way) and I forced myself to swallow it with my raw throat. Judy knows how bad my throat was...when I called her I'm surprised she knew who it was! They say the sore throat was from the breathing tube...still not very good yet tonight! The restrictions I have now are to not bend over so my head is lower than my heart, no heavy lifting, and no rubbing the eye...just daub around it lightly...also I can't read more than 3 consecutive hours for the first week...tv didn't have a restriction...since the computer is a lot like tv, I think I have freedom for the computer too! I called the dr office tonight just to make sure about those broken blood vessels...seems the bloody spot is spreading...they said that was ok...that it looked worse than it really was! So I'm putting one drop each of two drops (one anti rejection and one anti biotic) 4 times a day...morning, noon, night, and bedtime. No sleeping on the right side (t side) for a week. That's all I can think of now...this is a LOOONG post...I'll post more if and when I think of them! Karen P. Date: Fri Dec 7, 2001 8:49 pm I remember something....When the bandage is on there is a problem...
The rest of this story is available in our FREE group for people with Fuchs' Corneal Dystrophy. The group is designed to bring people together who understand the difficulties and frustrations of living with Fuchs' Corneal Dystrophy so they can help each other. In the group site are quite a few resources for members such as this "T Diary", other T stories, fuchs' stories, tips on making living with Fuchs' Dystrophy easier, links to information about Fuchs' Dystrophy, and a place for fast answers to problems, concerns, and questions. There's also a live chatroom for live discussion!
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