Fuchs Endothelial Corneal Dystrophy (FED)

April 17, 2024
eye

eye

If you’ve been reading posts here at Write of the Middle for some time, you might remember that in June 2022 I had eye surgery. I had Bilateral Cataract Extraction and Intraocular Lens Implants.

What I didn’t tell you in that post was that I also have a condition called Fuchs Endothelial Corneal Dystrophy. I’ll explain what that is more in a moment but first I will tell you that it is much worse in my right eye and that both eyes have worsened since the surgery in 2022. At my Opthamologist appointment in January, he recommended that I have surgery on my right eye before the end of the year. The surgery would be partial (not full) thickness Corneal Transplant surgery. Of course, being ‘transplant’ surgery this will mean that I will have a corneal graft kindly donated from a deceased person. My right eye is much worse than my left eye. My left eye does not need to be done yet and may not need to be done for many years. 

I’ve put off getting this surgery scheduled because as you’d know, my life has been very busy with moving Mum into residential aged care and having to sell the family home. Of course we don’t know what lies ahead but I can’t continue to put everything on hold just ‘in case’. Last Friday, I finally bit the bullet and phoned to get it scheduled.

My surgery for ‘Right Corneal Graft DMEK & Paracentisis
is scheduled for Monday 26 August 2024.  Eeek!!

 

Eye anatomy. Iris and optic, pupil and vision, medical science, retina and nerve, eyeball vector illustration |  Source: Macrovector on Freepik

 

What is Fuchs Endothelial Corneal Dystrophy?

Fuchs Endothelial Corneal Dystrophy is a disease of the cornea – the clear window at the front of the eye. The cornea allows light to enter the eye and is the main part of the eye used for focusing.

The cells lining the cornea (endothelial cells) help maintain fluid balance and prevent the cornea from swelling. In Fuchs’ endothelial dystrophy, the endothelial cells gradually die and fluid builds up within the cornea. This makes it difficult to focus, causing blurred vision.

The condition usually affects both eyes. It can worsen with age and cataract surgery (which explains my decline).

Fuchs’ endothelial dystrophy affects one in every 25 Australians over the age of 40. This is almost half a million people.

Causes and risk factors

It is unknown what causes the endothelial cells of the cornea to die. However, there are three main risk factors for developing the disease:

  • Family history – the condition is often inherited.
  • Age – the disease typically starts when people are in adulthood. But most people don’t develop symptoms until they reach their 50s.
  • Sex – Fuchs’ endothelial dystrophy is more common in women than in men.  

Can it be prevented?

Fuch’s endothelial dystrophy cannot be prevented. But having regular eye exams after the age of 50 can catch the disease before it starts causing pain and vision loss.

Partial Thickness Corneal Transplant Surgery

A partial thickness corneal transplant is done to remove the diseased, infected, or scarred part of the cornea. That part is replaced with healthy corneal tissue from a person who has died. The cornea is the clear surface that covers the front of the eye. In this case, only the affected layers are removed. The surgeon does not cut through the entire thickness of the cornea. These layers are replaced with layers of healthy donor tissue. Only a small area of the cornea is disturbed, usually resulting in a more stable outcome.

There are two types of partial-thickness corneal transplants:

  • Deep anterior lamellar transplant involves replacing all corneal layers except the deepest two. This type of cornea surgery can be used to treat keratoconus and scarring  (e.g. due to injury or the herpes simplex virus) that spares the corneal endothelium.
  • Endothelial layer transplant (endothelial keratoplasty) replaces the deepest layer of the cornea that has been damaged by disease or injury, leaving the front layers intact. This cornea surgery is commonly used to treat Fuchs’ endothelial dystrophy. This is the kind I’ll be having. More specifically I’ll be having ‘Right Corneal Graft DMEK & Paracentisis’.

DMEK

Descemet’s membrane endothelial keratoplasty (DMEK) is a corneal transplant surgery performed to treat patients with corneal endothelial dystrophies. DMEK surgery aims to replace the diseased innermost layer of the corneal tissue (Descemet’s membrane) with a healthy donor membrane. This is much less invasive than a traditional keratoplasty, which requires the replacement of the entire cornea and may alter its shape and the patient’s eyesight.

The doctor makes a small cut (incision) in your cornea. Then he or she removes the unhealthy part of your cornea. Next, the doctor places healthy tissue inside your eye. An air bubble is used to hold the new tissue in place. The transplant takes about 1 hour. Most people go home on the day of the surgery. But the air bubble stays in place for about 48 hours. You are told to lie on your back throughout the first few days. You may also need to sleep on your back.

After the surgery, you will also need to wear an eye shield overnight. Then you will need to wear a clear eye shield or glasses to protect your eye. You’ll use this until the eye has healed.

Paracentisis

I’m not really understanding what this is just yet so would rather not post a meaning for this word until I understand its meaning in relation to the surgery I am having. I’ll have to ask my Opthamologist. Google searches have only confused me!

Interesting Genetic Fact 

My cousin has this very same condition and has had the same surgery on just one of her eyes. She is my father’s brother’s daughter – so a paternal cousin – and is nearly 10 years older than I am. I’m unsure if there’s other relatives with this condition.

+++++

For now I’m going to try and not think about it. There is a big part of me that wants to cancel the surgery and put it off until next year (it’s not quite reached urgent yet) and then there is another part that wants it over with so I can travel next year and not have this surgery hanging over me. Do you know anyone with this condition or who has had this surgery? Like I said with this post leading up to my cataract surgery – please don’t tell me any horror stories!

Ciao for now,

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26 Comments

  • Reply Sue from Women Living Well After 50 April 17, 2024 at 5:43 am

    Oh gosh Min, you have a lot going on in your life don’t you? I’ve not heard of this condition and I’m sure you are nervous about the surgery as well as being overwhelmed in life atm so not in the right frame of mind. However, you have a date and if it needs to be done then I would proceed and get it over with. Thank you for sharing such an in-depth post around Fuchs Endothelial Corneal Dystrophy. I have regular eye checks each year and like many will have to have cataract surgery in the future. 2024 has certainly been a big year for you already, Min! Take care of yourself my friend. x

    • Reply Min April 17, 2024 at 8:34 am

      Hi Sue, yes I sure have had a lot going on in my life this year! I hadn’t heard of this condition either until I was told I have it! I guess there are worse thing I could’ve had so I’ll be grateful for that. I just have to have faith that the surgery will improve things and I can then move on. Hopefully my left eye will behave for a long time yet! Thanks Sue. xo

  • Reply Astrid April 17, 2024 at 6:31 am

    I’m so sorry you’re having to deal with this disease and facing this surgery only two years after your cataract surgery. Did you know you had Fuchs’ disease when you had cataract surgery or was it discovered after your vision worsened after it? I completely feel your doubts about putting off the surgery or wanting it over with already. I am now totally blind from a completely unrelated condition but when I was 17, I still had a tiny bit of vision and a cataract and asked the ophthalmologist whether it would be sensible to have cataract surgery. He said if I thought my vision would improve, he’d put me on the waiting list but there was no way of knowing. My father being in the room, him being of the opinion that I went blind at age 8 and should’ve accepted it, I said no. Well it might’ve helped back then. Fast forward nearly a decade and I finally had the surgery to be able to jump at every chance I could. It didn’t help. I mean I know your situation is different in that Fuchs’ as far as I’m aware doesn’t cause other complications so it isn’t like if you wait a year it’ll be too late or something, but you may’ve lost more vision that you could be enjoying after surgery this August.

    • Reply Min April 17, 2024 at 8:39 am

      Hi Astrid, yes I knew I had Fuchs before the cataract surgery but I wasn’t aware that cataract surgery could worsen the condition. Oh well – no point dwelling on that now. I’m so sorry to read your story and to learn that you are now blind! To have had vision (even just a little) and to lose it would be so very hard. You must have some amazing technology to be able to read my post and respond as you have. Thank you so much for your encouragement to me to just get the surgery done this August and not put it off. It’s a scary thing but I was scared for the cataract surgery and it all turned out to be fine. Sending good wishes your way. Take care! xo

  • Reply Joanne Tracey April 17, 2024 at 7:08 am

    No horror stories here, only warm wishes for you with all that you’re coping with right now – and it’s a lot. Take care x

    • Reply Min April 17, 2024 at 8:40 am

      Thanks Jo – yep it’s sure been a lot! xo

  • Reply Cathy April 17, 2024 at 7:43 am

    That’s a new one to me Min, I thought cataract surgery was a big thing (turned out I was wrong – simple as) but you are facing something entirely different. By the look of it you’ve done loads of research and by ‘catching it in the bud’ now that you’ve made the decision to go ahead with surgery life will flow along more easily for you. One less worry as they say.
    Thanks for providing the link up – keeping in touch with others is helpful for all of us
    Take care
    Cathy

    • Reply Min April 17, 2024 at 8:42 am

      Hi Cathy, it was a new one to me too! Never had heard of it before. I’m now getting quite familiar with it unfortunately! The cataract surgery scared me no end but turned out to be really quite easy and painless. I hope I can say the same about this one but I know it’s more complex. Anyway – I will be glad when this surgery is behind me and hopefully it will have been worth it. BTW I think keeping in touch and connecting with others is a very good thing too. xo

  • Reply Natalie April 17, 2024 at 9:29 am

    Hi Min, This FED condition is new to me but the treatment sounds quite advanced and provides a positive and long term outcome. Thinking of you and sending you my warm wishes. Take care.

    • Reply Min April 17, 2024 at 11:21 am

      Hi Natalie – thank you and yes it was new to me too! I’m really hopeful the surgery will make a positive difference. I really need my eyes to work – I love to see things! I love seeing nature. I love doing my art and of course I love seeing the faces of people I love and care about. Fingers crossed all goes well! xo

  • Reply Denyse Whelan April 17, 2024 at 10:12 am

    Dear Min,
    DO NOT put it off…
    do not put it off…
    and you will be ‘glad’ to have faced your challenges to have the surgery.

    And I am so sorry to read that this procedure, sounding as serious as it is, must go ahead.

    I’m sending you all the courage vibes I have.

    If the past few years are anything to go by you DO just fine…(I mean that nicely) despite the worry and anxiety.

    Trusting your professional team is key and I hope you feel that you can and do.

    Take care…of course, and I am glad to be back as well linking up.

    Denyse x

    • Reply Min April 17, 2024 at 11:26 am

      Hi Denyse, don’t worry – I’ll probably go ahead with it but I have to admit that I’m scared about this surgery. Transplants can reject! Fingers crossed that doesn’t happen with me. I appreciate you sending me your courage vibes cos I know you have SO MUCH courage! Thanks Denyse! xo

      • Reply Denyse Whelan April 17, 2024 at 2:30 pm

        Thanks Min…for your words of understanding. I admit I knew LESS about my cancer surgery beforehand because it was so very very new and I am glad I did well. My body did not reject what came from my body so that was good. In your case, I am guessing that when the choices are …as they are, you go and get it done.
        And I paid attention to my urging you to take the appointment and made one for another very unrelated matter but one I had been delaying.

        Take care,
        Denyse. x

        • Reply Min April 18, 2024 at 1:50 pm

          Hi Denyse, there’s still bits about my surgery I don’t understand – the meaning of ‘Paracentisis’ for one thing! Good to hear you’ve been reminded to make an appt you’ve been delaying! xo

  • Reply Joanne April 17, 2024 at 11:35 pm

    I am always inclined to put off medical procedures too but I do know that my thoughts about it are almost always worse than the actual procedure so I am much more inclined to just do it and get it over with and behind me now. I will definitely be thinking good thoughts for you and wishing for a speedy recovery.

    • Reply Min April 18, 2024 at 1:51 pm

      Hi Joanne, my thoughts are usually worse than the actual thing too which is why I asked for morning surgery and not afternoon. Otherwise I’d be overthinking and getting myself in a nervous/anxious mess all day! I’ll be first cab off the rank that day. Thank you for your good wishes! xo

  • Reply Natasha Mairs April 18, 2024 at 12:12 am

    This is really interesting to read about. I have never heard of this before. Hope your better soon x

    • Reply Min April 18, 2024 at 1:52 pm

      I’m sure it was quite boring to read actually! Lol Thanks Natasha! xo

  • Reply Christie Hawkes April 18, 2024 at 6:19 am

    Oh, Min, I’m sorry you have one more thing to deal with right now. That’s how it always goes though, isn’t it? I had never heard of this condition, so I appreciate you sharing all the details. I feel much gratitude for everyone who donates organs or tissue. I have put myself down to be a donor. Good luck to you with your coming surgery. It’s probably best to get it over with and not have it hanging over you…at least that’s my take on things.

    • Reply Min April 18, 2024 at 1:54 pm

      Hi Christie, thank you! Yes it’s been a bit of a rotten year but things could always be worse so I try to look on the bright side. I’d never heard of this condition before either. I have enormous gratitude for those that donate organs and tissue too. Thanks for your good wishes. It’s a while away but time seems to pass so quickly these days so I’m sure it’ll be upon me before I know it! xo

  • Reply sherry April 19, 2024 at 1:01 pm

    oh dear Min , sorry to hear you have to go thru this. I had cataract surgery last year and it was sadly not what i thought it would be. Everyone said how great it would be, but I feel that my eyes are actually worse than before. And I can’t bear fluoro lights now, nor see very well when reading etc. Hoping everything goes well for you.
    cheers
    sherry

    • Reply Min April 21, 2024 at 1:37 pm

      Hi Sherry, I’m so sorry to hear your cataract surgery didn’t go as well as you’d expected! I’m not good with bright lights either I have to say and I can see halos around them. I can see in the distance much better now because the new lenses I got were for that. However, without my glasses I cannot read at all. With glasses for reading all is ok … except of course for the decline in my right eye in particular with this other condition. Never in my wildest dreams did I think I’d need surgery on my eyes or have issues with my eyes in mid life. My eyesight was always spot on perfect for most of my adult life. You never do know what’s around the corner do you?! xo

  • Reply sherry April 26, 2024 at 6:16 am

    Yes Min it has been quite the ride over the last couple of years – with my hearing aids and cataract surgery and broken ribs and finding out I have osteoporosis in my spine!!! Oh boy getting old(er) ain’t easy!

    • Reply Min April 26, 2024 at 10:55 am

      Oh Sherry – you sure have been having quite the ride haven’t you? I didn’t know. Hope you’re on something to help with that oseoporosis. You’re right – getting older isn’t easy. Mum always said – it isn’t for the faint hearted! xo

  • Reply sherry April 26, 2024 at 12:09 pm

    That’s so true – definitely not for the faint-hearted 🙂 Yes I am on Prolia for my spine. It makes my teeth tingle :=) and hopefully is fixing up my bones or at least making sure they don’t get worse. I feel bloody ancient these days. All the best with your eyes too.
    sherry x

    • Reply Min May 1, 2024 at 9:21 am

      Good the Prolia is working Sherry … and thank you! xo

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