I am sharing my journey of what I've been going through with my eyesight for the last almost five years in case there is someone going through the same thing or looking for answers as I did when I was first diagnosed with Fuch.
Some may never read all the way to the end but I hope by sharing what I go through will help in another’s journey.. all updates are in order. Last update September 23, 2024
In the beginning of 2020 I saw my eye doctor for a routine eye exam for new glasses. Instead of getting glasses I was told that I had cataracts in both my eyes . Everyone I talked to that had cataract surgery said basically the same thing. That they could see better, the colors were so vivid, their sight was clear, and most didn't need to wear glasses. An appointment was made to see an eye specialist in Shreveport for the beginning of March that year. After meeting the doctor and an eye exam , another appointment was made to have the surgery in the left eye first and then a couple weeks later for the right eye. I went in on March 12, where I was prepped with an IV and given a sedative. Slept through the whole procedure, was sent to recovery, and then went home with a patch over my eye. There were no known problems that I knew of. When it was time to have the right eye done, my appointment was put on hold because Covid had taken over and doctors surgeries were being postponed. When I finally got the call it was in May when I went through the same procedure but it seemed more rushed and I wasn't put under all the way. As time passed I just wasn't seeing clear. I was having a lot of flashes and black floaters. My old glasses were not letting me see clear and as time went by I couldn't figure out why I wasn't getting that aha moment everyone had spoken about. When October rolled around it seemed to be getting worse so I called the eye surgeons nurse. She spoke to the doctor and I was told to be in his office the very next morning. That next day the doctor did a few tests and sent me over in the same building next to his to see a Cornea specialist, Dr. C.
Dr.C ran some more tests and sat me up to have the lazier surgery to take the cataract lenses out. So, I went through that procedure. Left eye in November and the right eye in December . When I returned to check the vision and fracture on my eyes, he ordered glasses and two kinds of eye drops.
The glasses came in two weeks later and when I put them on I could not see to read at all. I wish this was the end of this drawn out story but it was the beginning of seeing the doctor every month. He tried different eye drops for months. Eye exam after eye exam, fracture test after fracture test and tests that looked behind the eye. Nothing was changing, just getting worse. Finally I was diagnosed with Fuch syndrome in both eyes....
My corneas were deteriorating and causing my sight to go. The left eye worse than the right but both eyes had this. I'm still going to see him every month during all the tests and visits. Because of Covid , my husband was always with me every office visit but stayed in the car and months later was able to wait in the waiting room as long as he wore a mask. In April I asked for him to be able to go in with me so Dr.C could explain to us both what was going on and what procedure was next. He explained that I needed corona transplants, the left eye to be first.
On April 14, 2021, at 6 a.m. I was checked into the hospital , an IV started , and prepared for a cornea transplant. After almost an hour waiting in the pre-op room, Dr. C step into the room alone with his nurse to tell me my donors eye had finally arrived at the Shreveport airport and they we're waiting for arrival to the hospital. The hospital minister came in and prayed with me and my husband . After about an hour they were taking me down the hall to surgery. All I remember from that was someone asking me to count and I think I made it to number one. When I awoke I was in recovery 3 hours later before taken to my hospital room where I would have to lay flat on my back all night and for the next three days at home. No pillow, no moving around.
James took care of me and the house. I'm very thankful he was there for me and helped me get through all those hours just laying there. I have spent every month in the doctors chair getting tests, more drops, fracture measurements. Every time being assured the graft from my donor was doing very good and not being rejected. As the months went by, my vision was not getting better. Still flashes and floaters and still can't see to read. But now my vision is double and to the right and the top is hallo letters. From a distance I can see colors, shapes, people, but not their faces. I am wearing 3.75 cheater glasses from the drug store and trying to make out words and reading close and staring at some words longer to make out. My right eye is getting weaker each day from the strain I am putting on it to see. If I close my left eye it's worse. If I close my right eye it's blurry. I am not allowed to drive after dark because I can't read the road signs and car lights look Tripple vision. Texting and typing on my phone or keyboard is done with holding them very close to my face, a lot of starring at the words, and a lot of spell check . My iPhone is set with very large fonts and I use microphone tying.
Dr.C has ran test behind my eyes and numerous monthly eye exams for another full year. He prescribed very strong Prism contacts this past year in October. When I went in for the fitting and training for them I could not see. Could put the contact in but not take it out. After over an hour the doctor saw me and said it wouldn't have worked anyway since I saw no difference while I was wearing it in the training room. So he prescribed special Prism lenses in glasses.
When they came in and I put them on they made me see triple vision and made me dizzy. We went back to the drawing board. More eye drops to make my pupil shrink in size. Then the next visit a stronger eye drop. In three years I bet I have been through a dozen different drops. The doctor tells me and my husband on one of my latest visits that he can take the cornea transplant out and do another one a different way. It's not a gauretee this will work and don't forget my right eye need's a transplant also and is getting weaker. He tells me that there could be a blockage of light. So here it is January 2023 and I'm still fighting to see. I'm not sure what's gonna happen this year. I'm not sure if I will ever see right or if I will go blind. I'm not afraid and I'm still hopeful that Dr. C will get my vision back. I trust him and I know he's doing everything he can each visit, each month. Today’s my monthly doctor appointment (1-11-23), to see how my eyes are doing. The normal fracture and pressure test, then the exam. Then an unexpected test which shows nerve damage. One more hiccup ... Subscribed Alphagan P 0.15% for pressure. When I went to pick it up it was $223. Did not fill because of price just to try one more drop. A different one was called in and I see DR.C on February 8. A test for behind the eye and a pressure test.
Today is the 8th of February and another trip to the doctor. First I was sent to the testing area for a Field of Vision test. This is my second one , first was back in September. This is usually done to check the optic nerve for glaucoma... what? Wait...After seeing the doctor he said I may have glaucoma and Fuchs. Another eye drop was added to the other three I already do every day. One to shrink my iris to not let light in, one for dry eye, and two for pressure. How much longer can I do this ? My vision is getting worse and now I'm double labeled for blindness. There is no cure for Fuch or glaucoma...My migraines are almost daily which I'm sure is from my eyes, the left eye still needs a transplant that I don't need to do if the right one isn't letting me see, and depression is knocking at me all the time from it all.... I'm sorry to vent on my update on todays visit. I'll update next month.
My next monthly visit is March 8, 2023.
March 8, 2023
Today was time for my monthly visit with Dr. C.
Appointment was for 10:15 and I left there after 12:30. Several different tests today... pressure, thickness, photos, exam, another pressure and about 6 different eyes drops. Dr. C and I had a long talk about what's happening and what the next step I will be going through. He told me in the last five months my eyes were worse and the thickness was worse in the right eye. The ghosting of faces are double and sometimes triple wording. Things are more glary and I can't see to drive past four o'clock cause I can’t read road signs and car lights look like three cars coming at me if its dark outside. I'm going to have another lazier surgery on both eyes again. They seem to be fighting against each other as far as thickness and not letting light get through. The transplant itself worked when he did it, but for what ever reason the thickness in both eyes from the Fuchs' (fewks) dystrophy is not letting me see. So, lazier surgery on both again, a couple weeks apart, then a full cornea transplant on the left eye. First time was a partial and will be more difficult to go through. Should it work this time I will follow with right eye, full cornea transplant. I'm taking two steps forward and a few hundred back. Will be a different surgery, a drawn out healing , tests, eye drops , lots of visits... BUT,
God will be with me all the way and if this doesn't work, he will be my eyes and lead me around. I'm not scared or worried.
First left eye Lasor surgery will be on March 22 at 2:00, post opt will be April 6. Will post right eye date and post opt after that . Then I'll post my transplant surgery.
March 22, 2023
April 17, 2023...update
Went for pre-op exam today and discussed my surgery with the doctor. My Full-thickness cornea transplant is scheduled for next Friday, July 14.
During the full-thickness cornea transplant, a circular disk-shaped portion of my cornea is removed and replaced with a similarly sized portion of cornea from a donor. This operation is called penetrating keratoplasty , done in the hospital, and different from the partial transplant I had in 2021 on the same left eye.
This post is with the help of my oldest granddaughter since my vision is not clear.
A week ago on Friday, July 14, I was admitted to the hospital to remove my donor cornea on my left eye and replace it with a new donor cornea. This one was a full cornea transplant. I feel very grateful for the donor of my first transplant and that she shared a gift for the last three years with me. It wasn't her cornea that was rejected, it was a perfect graft. But for what ever reasons my cornea was not letting me see anything but ghosting, double vision, and blurry sight. The only thing I know about the new donors eye is he or she was in their early fifties.
I was prepped for surgery at around ten a.m. and taken to the operating room right at noon. My surgery went well and I went to recovery after about three hours. The next morning Dr. C. removed my bandage and tested the pressure and the stitches. He explained to my husband and I how the procedure was done, how many stitches, and to be patient because it will be a long recovery. I could only see a bright screen with just a blurry letter or two swimming in the background as I tried hard to see. I can not drive for what will be a long time, have to do two eye-drop prescriptions four times a day and an eye ointment at night, and sleep in the dreaded plastic eye patch.
I went to the office yesterday morning, the 20th, to check to pressure again. We talked about the pain I have been having , the swelling, and not being to see to the left of me. Dr.C. checked the pressure and stitches . I will continue medication drops and patch and come back in two weeks. I am feeling hopeful. I'll end my post today with a photo of my eye and if you zoom in you can see the stitches in a circle. They look like tiny lights.
Today I had another OCT photo exam added to the rest of my normal tests. Doctor C.
March 7, 2024
Saw Dr. C. Today for the monthly tests and exam . Got my third stitch out in the last couple months. About seven left in my eye now . My vision is being steady now as far as seeing things. By that I mean the ghosting, double reading vision, blurring of far off objects and people….same old stuff but steady. Thats better than being worse.
April 30, 2024
Saw Dr. C. At noon today for my monthly appointment, testing of my eyes, etc…
Two more stitches out today. Still ghosting, double letters, still same. But colors seem brighter and even thou the flashes come and go, the floaters have been less. I’m trying to stay positive. Go back next month, and for now I continue to wait and see what I can .
June 5, 2024
Great report this week on all my tests and MRI.
Sight is improving and fracture numbers are coming down. He said the cornea is almost laying flat now and even thou he didn’t take more stitches out today he was cheering at what I was seeing in the machines today. Made me cry and he almost did too cause he said he was so pleased with what he was seeing from the tests. See him in a month and he’s hoping the cornea stays flat. This is the best news I’ve had in going on almost five years. It’s not over yet but good news is a blessing. I know the surgery's are only temporary and I still have the right eye to do .
August 12, 2024
I’m so excited that the last three monthly visits to see Dr. C, have been so uplifting! Even thou the double vision and ghosting is still there , I’m so thankful to read the letters. I have to admit in all of the years of what I have had to go through, reading anything, even seeing this key board to post an update, it’s been Gods blessing. No stitches out today and cornea is still laying flat! Today was a topography and a tonometry , along with a pressure test and exam of the stitches.
September 23, 2024
For those going through Fuch like me, you know what the journey has been like. Test after test, eye drops after eye drops tried, glasses that don’t work or help ,
the ghosting and double vision, the fear of the unknown, and so many more problems.
My last four monthly visits have been promising for my left eye sight. I still have some stitches in there but the donor cornea is finally relaxing. Yes, the right eye is getting weak and I know the future of the things to come and go through again with that one. My eyes aren’t cured, they never will be. The two transplants have been a long and sometimes difficult journey for me. Last week I finally got glasses!! I can’t tell you how grateful I am to finally, after five years, to see things a little better . I now can read my Bible , see things in a sharper vision, and smile . It’s been hard and it will be hard on those going through this. I still have the ghosting, some double vision, some flashes and floaters. That may never go away because I still need the right eye transplant. They aren’t cures but they give us hope that the delay of blindness will be later . This is my last post on this journey of my Fuch . I hope those that followed me will get a Doctor as good and as kind as mine, better vision, and HOPE! Have faith and God bless!
Hello, this is Holly O. I finished reading your blog today. You have had a long difficult journey. God is holding you right now, being your strength and your eyes if it comes to that. I feel deeply for you, am praying you will still see something and not go blind. Though we don’t know why this happens to some we do know Jesus is always with us. As another Fuchs person you have my prayers and support with love,
ReplyDeleteHolly, thank you for your sweet comment. I am house and dog sitting this week for our youngest. With help from big screen and keyboard here i am able to hunt and peck. lol. So, if I spell things wrong Ill blame Alexia. I will not give up and I will pray that you won't either. Each person is different and I'm praying that you will beat this. We both have the greatest physician on our side. God! I truly believe he teamed us together for a reason.
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