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.

Appointment

I now have an appointment with my regular eye doctor on Wednesday the 24th. at 9:20am. Now, to coordinate with my husband, a date for a trip to the corneal specialist/surgeon about 4 hours away...

"Finally spoke with the Corneal Specialist"

Today I finally got a call from the corneal specialist that had been recommended to me by someone whose transplant was done by him. From looking over my chart from my eye Dr, he doesn't seem to think that I'm quite ready for the transplant, yet, unless my vision deteriorates a lot in the next year. He says that my Dr. can still get my eyes to 20/20 with glasses. He can't see what I see, though, so I'm not so sure I agree with him. On the other hand, he hasn't seen me for himself and I still don't have a corneal thickness reading.

He says that the full transplant will make my cornea an irregular shape, like a football at least, but sometimes even more severely distorted. He said that sometimes a hard corrective lens is needed after the surgery. (I already have astigmatism, but only slight) He also said that it usually causes near or far sightedness, which I don't have right now, and would need glasses or corrective lenses for that.

He told me a bunch more about Fuchs that I already knew, but I listened to see how knowledgeable he is about it. He seems to really know what he's talking about, or at least confirm most of what I already was able to find out through research and my online support group.

He seems to think because I am a photographer, I should not rush into the surgery too soon as my vision may be worse than it is now and harder to correct. I guess I'll keep tracking my symptoms and be in prayer about it.

"Called Again"

I called my eye doctor last week to make sure they had sent the files to the corneal specialist, and let them know that I still haven't heard from him. They ended up calling him and he does have the questions I emailed to him. They are at his house and he's supposed to call me.

"Questionnaire"

I have sent a questionnaire to a corneal specialist over in Idaho Falls.  He was recommended to me by someone on my online Fuchs' Support group.  If I like his answers and feel comfortable with the possibility of him doing my corneal transplant surgeries, I will make an appointment to see him.  It will be quite a drive and some gas, but well worth it for the security of knowing I have someone well qualified to operate on my eyes. 

I am awaiting his reply.