Surgery Date

Well, the time has come and I now have a surgery date for my first corneal transplant.  The date is February 5th. 2013, in Portland with Dr. Mark Terry who was the first in the U.S. to do this type of surgery and has a success rate well into the 90% range.  My husband and I will be staying in Portland for 7-14 days before returning home, depending on how things go. 

I was just approved for pre-existing health insurance.  What a huge praise!  Our costs have gone from $60,000+ to more like $12,000-ish.  (for both eye surgeries) Of course, now we're praying for provision for that amount, since we don't have it.  I am hoping to get both eyes done in 2013. We know that God will provide and give us wisdom for how we can pay for the expenses.

Now that it's a go, I've been somewhat anxious, especially since it all happens with me being awake!  Yep, awake!  I know this is something I cannot do, so God will have to enable me when the time comes.  I had to be put out just to get my wisdom teeth out, so the thought of my eye being cut open and a layer of my cornea being peeled off like wallpaper and a new layer of donor tissue put on, is beyond me.  

Then, there's the donor tissue.  I'm so thankful for it, yet so sad for the donor family.  At the same time, I remember in my grief after my father died, getting a letter notifying us that two people had regained their sight due to my dad's donor eye tissue.  I burst into tears, but it made me so happy to know that his death helped someone else.  So, maybe that fact will give a little solace to the donor family and me as well.  I will be praying for them. I sure never thought I'd find myself in this position back then.  

My mother recently had cornea transplants in both of her eyes and she is doing well and seeing better than she has in her whole life.  Her procedure, called a DMEK, was a little different than mine will be and my outcome will more than likely not be as good (she's seeing 20/25 without correction and she just had her first surgery in late June and the second in late September);  the reason for the differing outcomes is that they are removing the same amount of my tissue, but replacing it with a thicker layer of the donor tissue, resulting in my cornea ultimately being thicker than it was originally. (called a DSAEK)  The recovery time is longer as well.  Months as opposed to weeks.  This is still better than the full transplants they used to do, which took 18 months or so to recover from.

I guess that concludes my update. Please keep me in prayer as the time gets closer for my surgery.  I know God will be with me and has my best in mind.

"The Latest..."

I haven't done an update yet this year, so here goes...

I think my eyes are pretty much on a slow decline, but I will find out for sure in May since that's my next check up. It is getting increasingly hard to do what I love to do, take pictures outdoors.

I'm so thankful for my digital camera and it's autofocus capabilities, which can sometimes be a lifesaver for me. It can also fail me, though and then it's frustrating to see that it lost focus and what I thought would be nice sharp images, weren't. I'm hoping to upgrade my camera to one with a larger LCD screen, which will be helpful.

I'm having to wait longer in the day to do certain things and even then, there are things that don't come into full focus for me. That was the case with my last update, and I'm not sure how much worse it is now, than then.

My headaches are more frequent, especially set off by bright light or too much time on the computer.

So, I will just keep on keeping on and doing what God wants me to do. Love and serve Him. I guess that's all for this update.

"Fuchs Corneal Swelling and diet"

I wonder...if diet can affect corneal edema in "fuchies." (aka: people who have Fuchs.) Or, at least for me because I'm also a Celiac (aka: someone who's allergic to wheat gluten) and tend to retain water everywhere when I eat wheat. So, maybe it makes my even my Fuchs symptoms worse when I cheat and eat wheat...as I did yesterday. You see, I'm having a bad vision day today and yesterday I ate not just wheat gluten, but also salty foods...leading to water retention. It does make logical sense and would explain why some days I wake up with very little corneal swelling and very little watery eyes and other days I awaken to a very hazy house and very watery eyes. Hmmmmmmmm. I wonder...

#1 "Diagnosis..."

It still seems unreal to me that this blog is even necessary...but it is. Let me start at the beginning...

Two years ago this May, my two daughters and I went to the eye Dr. for a routine visit. Just a check-up to make sure things were fine. Maybe get a new pair of glasses for myself or try contact lenses or both. Well, they ended up asking if we wanted a digital photograph taken of our eyes. I wasn't going to since it was $12 each and not something the insurance normally covered, but something made me decide to do it anyway. When the Dr. showed us the photos on the monitor of each of our eyes, I (being a photographer) noticed that mine looked blurry and soft while the girls' photos looked sharp and clear. I asked, "Why does my photo look so hazy?" He said he would talk to me about mine after we look at the girls'. I didn't really hear much after that except something about my daughter needing glasses until some muscles were strengthened. All sorts of things went through my mind, but I was still not prepared to hear his words regarding my eyesight. He told me he thought I had a rare, degenerative corneal eye disease, called Fuchs' Endothilial Corneal Dystrophy. It could someday cause blindness. Sometimes it happens sooner and sometimes later, sometimes faster and sometimes slower, but not to worry about it right now. He suggested I go to a specialist to get a second opinion and confirmation and he'd check them again in a year to see if there were any changes.

I went home kind of shell-shocked. I didn't really know how to process what he told me, and I can't say now just how I responded since it is all a vague memory now and I wasn't thinking straight. I do know that I called my husband and told him the strange news, made an appointment with the specialist and called my pastor for prayer suppport. I also spent time in prayer, trying to maintain, while I awaited the upcoming appointment.

The day of the appointment came and it was confirmed. I did have this mysterious disease in my eyes. I then went home and began to grieve for something I'd not yet lost. I thought about grandkids I'd never see, my own dear family, the sunsets and landscapes, thought about what it would mean to live in a dark world. Being blind has always been one of the worse things I could imagine. After a realistic amount of time spent in tears, I moved on to depression and proceeded to anger and fear and frustration with those that didn't share my emotions over the diagnosis and all of the other emotions associated with the grief process. I felt alone.

Then, there came a moment in time where I again got on my knees, placed all of it at the foot of Jesus and began to get back to "life as usual." I knew that God could heal me of this disease, and I trusted Him to do what was best for me. I also knew that nothing would change by worrying about and dwelling on it. In the meantime, I began to look into dietary helps, vitamins and other things that may possibly help, as well.

Some may say that giving it to God and moving on was a type of denial about the illness. I disagree. I do; however, think that it caused me to miss some of the signs that the disease was progressing. It's not that I had forgotten about it, but it wasn't something I thought about on a daily basis...it was definitely on the back burner.