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.

Update: Surgery Consult & Evaluation

"I'm blind in one eye and can't see out of the other" used to be a funny saying.  Now, for me, it's reality.  I still laugh when I say it, though, just to stay on a positive note in spite of the update I now write. 

I recently went to Portland, Oregon to meet with Dr. Mark Terry at Devers Eye Institute.  He's a cornea specialist.  He was the first to do this type of surgery (DSAEK-a type of partial corneal transplant) in the U.S. and second in the world.  He has a 98 percent success rate.  He's very likable and knowledgable but does not have a god complex like many in the medical field.  His evaluation of my eyes was that my Fuchs has progressed to the point of needing a corneal transplant.  My left eye should be done first and soon as I'm now legally blind in that eye under the glare test. (that means in real life situations...not the artificial, ideal conditions of a normal eye test)  My right eye will be done following a successful recovery of my left eye.

I knew this was coming, but a sort of disbelief still hit as I contemplated what it truly meant.  I get a cornea transplant or go completely blind.  I get my eye cut open, a layer of my cornea peeled off "like wallpaper from a wall" and a new layer of donor tissue put in or lose my sight completely and permanently.  What a horrible thought!  And what a wonderful thought!  It's scary, and yet it's a cure for my disease.  There are many eye diseases that cannot be cured;  I thank God that mine is one that can.  It's amazing what surgeons are able to do these days.

The problem now is...money.  It's a pre-existing illness for my plan, so it's not covered at all.  Each eye will cost approximately $30,000 plus the travel costs to Portland, and food & lodging for the week of the surgery and post-surgery appointments before I'm released to go home.  So, we're working on researching all avenues because time is of the essence.  I sometimes worry about the provision for this upcoming necessary surgery, but I serve a BIG God and I know He has a plan for my eyes and has promised to provide for my needs.  He loves me very dearly so I keep trusting in His perfect will and timing for all of this.  He owns the cattle on a thousand hills and the gold in every mine so the amount of money I need is nothing to Him.

Please be in prayer with me for this.  For God to provide the financing I need.  Also, please pray for my mother as she recovers from her first corneal transplant recently and as she prepares for another one in October.  I believe in the power of prayer.  Thank you!  I appreciate your support more than you know.

Re: Progression Check Up

Some days you just want to go back to bed & stay there; or even better, for Jesus to return. Today has been one of those days for me.

I went to see a corneal specialist to check on the progression of my Fuch's. I've tried to stay positive, but what I pretty much knew, was confirmed. My Fuch's is continuing to progress and I am now facing some decisions regarding getting the first of two corneal transplants sooner, rather than later; like within the next year. :(

I nearly broke down in sobs as they tried to explain there's nothing more they can do with my prescription to help me see any better. In fact, my eyesight isn't much different with my glasses than without. I held the emotions down at the time and now those emotions are just stuck until I finally do break down, but my heart is heavy over this. I just feel like I'm in a fog. It's like the death of a loved one who's been terminally ill for a while. You knew the end was coming, but when it does you're still in shock. That's how I feel. I know God will get me through this as He has so many other majorly difficult things in this life, but sometimes I just feel a bit overwhelmed. It's tough being a human.

I got my corneal thickness checked for the first time. This is one of the best indicators of where you are with the disease. They are about 20% thicker than normal. They also tried to check my cell count (cells die off with this disease), but were unable to get a reading due to the thickness of my cornea.

There are basically three options for me. 1) Do nothing...and continue to go blind. (not fun so far) 2) Some type of partial corneal transplant. (there are several, but haven't been around very long) 3) A full corneal transplant. (Been around a long time, but some doctors won't even do them. There are other factors, too. All the surgeries have possible risks and all have possible benefits. Next week I will be going to Portland for another appointment with another corneal specialist. My husband is driving both myself and my mother, as she also has this disease. Fuch's is hereditary, so if anyone reading this is related to my mother's birth father, please get checked out for this disease. You have a 50/50 chance of developing it now or in the future, as do your children. I will do another update after my appointment next week.

You can't tell by looking at me that I have this disease, nor can you tell how the world looks to me. If you'd like to see examples of how I see, CLICK HERE. These examples are not exactly how I see. Some are far worse and some are better or just different. That's the nature of this disease. The symptoms can vary greatly from person to person.

As you can imagine, seeing like this is causing quite a number of difficulties with my photography, which is much of the reason I've not been updating my blogs or facebook page much in the past year or so and have had to turn down jobs. It's so frustrating when I can't tell if the image is in sharp focus, has enough contrast or saturation, etc...and it's very difficult to shoot outdoors due to the glare issues this disease has caused me. Upgrading my equipment, would help with the capturing side of the images, (money I don't have especially looking at possible surgery) but I may still need to find someone to post-process or tell me how my adjustments look as I do them, until...idk.

For now, I just need your prayers and support. Thanks for reading and caring.