Through The Fog of Fuch’s Dystrophy

Vision Through The Fog of Fuchs DystrophyIn November of 2015, I was diagnosed with Fuch’s Dystrophy. That seemingly general diagnosis on a Friday, evening led to an appointment with a cornea specialist a few days later on Monday.

That Monday… Let’s just say changed my life FOREVER!

Fast forward six months May 19, 2016

It was my third or fourth appointment with cornea specialist Dr. Berry. We completed all the necessary preliminaries, and I was cleared for surgery and put on “the list.” As in the transplant list, to receive donor corneas.

Yeah, it took you by surprise huh? Imagine being told, “No, there are no drops to fix Fuch’s Dystrophy.” My only recourse is to eventually have partial cornea transplants, or as DSEK. This procedure removes and replaces the fifth layer of the cornea with donor tissue.

Fuchs’ (fooks) dystrophy affects the cornea — the clear front window of your eye. This disorder causes swelling in the cornea that can lead to glare, cloudy vision and eye discomfort.

-Mayo Clinic

After the initial visit, I started doing my research and trying to find out EVERYTHING I wanted and needed to know about this weird sounding disease.  I was surprised to find that every website about Fuch’s Dystrophy said pretty much the same, and that wasn’t a lot. But what I did find, was more valuable than I could have imagined or asked for, a Fuch’s Corneal Dystrophy support group on Facebook.

This support group is  “For those who have or have family that has this inherited disease.”  I’ve learned more from the experiences of its more than 1,000 members through post and discussions. The members have truly been a source of comfort.

An article posted in the group Corneal Dystrophy and Fuch’s Syndrome –The View From Our World validated everything I was seeing, and not seeing. For the first time, I could share with my family what I was experiencing and they could finally wrap their minds around my struggle.

On The List

Last week I had my pre-operation visit. Pictures were taken of the inside of my eye to make sure my retina is healthy enough to withstand the surgery. And indeed, it is. Dr. Berry, with all his optimism, said their office would now call the eye bank, and put me on “THE LIST.” The transplant list. Soon, I’ll get a call to schedule a date.

Just like he said, the call came, and my first transplant is scheduled for July 6. Pray for and with me that it be successful.

I knew from the start, this would be a transplant. But in my mind, I was thinking it’s just a surgery. And didn’t realize I’d have to be put on “THE LIST.” Unlike other organs, I’m not waiting for ‘the call.’ Through organ and tissue donations the Eye Bank is able to store corneas for needed transplants.

In 2015, 217 corneas were provided for transplants daily! That is AMAZING!!! – Eye Bank Assoc. of America

Becoming A Donor

I’ve been a registered organ and tissue donor since my early 20s. I’ve always thought it was important. Now I have a greater reason for being an advocate.

Being an organ and tissue donor, like giving blood saves lives, and restores a quality of life to those receiving transplants of different types, and degrees.

Many people have arguments against organ and tissue donation. But I’d like to present a strong argument FOR. Imagine if you will… someone being seriously ill, and all medical options have been exhausted. What if the ONLY option left was a life-saving organ transplant. Now imagine if you will, that someone was YOUR loved one!

How to become an organ and tissue donor:

  •  Register with your state donor registry, if available.
  • Designate your decision on your driver’s license.
  • Talk to your Family. To help your family understand and carry out your wishes, sit down with your loved ones and tell them about your decision to be an organ and tissue donor. They can serve as your advocate and may be asked to give consent for donation or provide information to the transplant team.

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3 thoughts on “Through The Fog of Fuch’s Dystrophy”

  1. Thinking and praying for a successful surgery. You are right – the Facebook group is awesome.

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