2-1/2 Weeks until first DSAEK

1/18/13 Friday 

My corneal surgery for my 1^st. (left) eye is in just 2-1/2 weeks! The PCIP (Pre-existing Condition Insurance Plan) is in place and it’s such a relief.  I feel I’m ready, or at least as ready as one can be for such a thing.  God will have to give me the courage and strength to go through with it when the time comes, because it’s not something I can do on my own.  I know He will help me do it! 

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.

He said, "Think Positive"

"Think positive" he said, "it could be just a fluctuation." Bless his heart, my eye doctor, he always tries to be so encouraging. I tried to think positive but by the time I got back to my truck, I was in tears. I will try to think positive but more than that, I will pray; but the reality is that my eye disease is most likely progressing. The corneal swelling I've been experiencing in my left eye has been causing my glasses to be somewhat bothersome & even useless; between my blurry vision, eye strain and headaches. There's more guttata than at my last check up and the cornea in my left eye is swollen quite a bit. The doctor suggested I stay hydrated & take my hydration drops, too. I think it's time to get my cell count and cornea thickness checked by a specialist. Fun stuff.

UGH!!! Do you mind if I just say that as I also await results of skin biopsy this week, that I am feeling a little picked on? Good. I know God has a plan and that plan is for ultimate good. I also know that other people have it a whole lot worse than I. Still, I'm only human and continue to have human emotions. So often what I know about God and His work in my life and what I feel, differ. That's why it's so important that I act on Truth, not feeling. Easy to say, hard to do.

I heard someone say on Christian radio this week, that our lives are like making a batch of cookies. Each individual ingredient doesn't always taste good on it's own just as situations in our lives can seem bad at times, yet when they are all mixed together it produces something very desirable. I am looking forward to my life becoming that yummy cookie. In the meantime, I will continue to try to learn from the experiences and challenges God allows for my growth, pray for healing and if God chooses not to heal me, I know He'll be with me through what awaits me with cornea transplants and such. I will take my emotions to God in prayer again, cry a puddle at His feet and trust Him for the future and to love and comfort me today.

"May your unfailing love be my comfort, according to your promise to your servant." Psalm 119:76

Skin biopsy update: benign! Praise the Lord!

Symptom Update...

I figured I'd do a symptom update and what I'm doing to combat them...

*Trouble reading road signs/fast food menus/printed material/Bible-Try to take someone with me if I need to see street names and eat at home. haha Got new, stronger reading glasses for close-up, reading and computer work. These work sometimes, depending on what my eyes are doing.

*Eye pain, with bright/fluorescent light-I wear my dark, polarized sunglasses with lining that keeps light from getting in. These are especially fun during hot flashes when they totally fog over. Unfortunately, I can't wear them when I'm in the field so this makes taking pictures very difficult.


*Burning/watering eyes-Most of the time, especially with florescent light or bright sunlight or snowy conditions. Worse when allergies are acting up.-Wear my sunglasses. Use eye drops.

*Imaginary moving objects/shadows-While driving-Nothing helps with that.

*Imaginary moving objects/shadows-In the house-Nothing helps with that.

*Watery eyes in AM-Taking MSM eye drops to help with drying them up, some.

*Hazy vision-MSM eye drops help some with this.

* blurry vision-Glasses for reading. Can't use them when I take pictures, though.

*Swollen corneas-Again, taking MSM eye drops to help with drying them up and swelling go down.

*Halos-around street lights and light bulbs-Nothing helps with that.

*Glare-night driving, computer screen, back lit objects & off metal objects-especially sun glaring off cars-I try not to drive at night, especially if it's raining.

*Dry Eyes-Dry, gritty and burning. Wetting drops help some with that.

*Feeling of foreign matter in my eye and occasional feelings of sharp pain (like a prick) that quickly subsides.-Nothing helps with that.

The "eyes" have it...again!

I've put off writing this post for a while...

As I write this, my Fuch's symptoms have returned after about a month of clear eyesight. In my humanness, I can only ask "why?" and pray that they may go away again. I know God doesn't mind me asking, as long as I continue to trust in Him and know that everything He allows, He allows for His perfect and greater purpose in my life and for His glory.

Although I'm saddened and frustrated to have this "thorn" back in my flesh, I am truly thankful for the time I had with clear vision. There is a song that keeps going through my mind regarding this situation, it's a praise song that we sing at church. They lyrics say, "You give and take away, you give and take away. My heart will choose to say, Lord blessed be your name. Blessed be the name of the Lord, blessed be the Lord."

So, what do I mean by Lord? Usually, we refer to God as Lord, God our Father, etc...when we pray. There are many names in the Bible, for God. God refers to Himself with many other titles. The names reflect His character, purposes, and His attributes. God reveals His power and glory to His people through His names.

One of my favorite names for God is Jehovah-Rophe or Jehovah-Rapha,"the Lord God heals." (Psalm 147:3) It means to restore something to its original or normal state. God wants to heal us. However, it's not always a physical healing we need the most. Because of sin, we all need spiritual healing and sometimes we need emotional healing. Our 'land' may even need to be healed.

Another one of my favorite names for God is "El Roi." El Roi is "the God of seeing." He sees everything. This name may be used to ask God to reveal something to us by opening our spiritual eyes. God sees it all. The God who sees, or El Roi means that God sees the suffering and afflictions of His people. He will help us if we are humble and call upon Him. (Hebrews 2:18)

These are two of the names of God that I have chosen to call upon in my life, for I have needed spiritual healing. I've had many physical afflictions and even some emotional things from which I've needed healing. The Lord is faithful and has been with me through thick and thin. Do I always "feel" His presence? No, but I know He is there. Each time I pray and read His word, I have experienced God. If God chooses to permanently heal my eyes, I will give Him glory; and if He chooses not to...I will give Him glory.

Either way, I continue to choose to glorify God, experience Him and His work in my life and I will wait in expectation to see what He will do next, in and through me.

Stay tuned...

HUGE PRAISE and Symptom Update-October 2009

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14

When I prayed for healing, I didn't expect it to come this way, but God seldom works the way we think He should. That's why He's God. His ways are not our ways. Let me explain...

On October 27th 2009, I still had all of the symptoms of fuchs that are listed here in the black text and, barring healing, most likely had two corneal transplants or blindness to look forward to in my future. In the afternoon of Oct. 27th, I had my first spinal adjustment by Dr. Mix-Stork, using the NUCCA method. It was VERY GENTLE; in fact, I hardly noticed it other than I could feel a releasing of pressure sensation in my neck where she was applying the adjustment. The next two days I noticed changes to my eyes.

By the 30th, my eyes were totally clear upon awakening and I could tell my corneas weren't swollen and they weren't watery. Apparently, my spinal cord has been compressed or pinched for at least the past 6 years since my car accident, causing a plethura of physical maladies; my eye symtoms among them. Upon releasing that pressure, my fuchs symptoms have all seemed to have reversed themselves. Most of them are gone, the rest are due to my having an astigmatism, so my eyes are back to pre-car accident state at any rate.

I have not been to the eye Dr, yet, so I cannot say definitively that my fuchs is gone, but I can say that all the symptoms I was having are gone or decreased. I am praising God for this change as it is He who created our wonderous bodies to be able to heal themselves. Due to the car accident, my body needed a little help, but it's now untwisting itself with the help of regular adjustments keeping my spine in alignment, until it can keep it there on its own. I do give credit to Dr. Mix-Stork who is so caring and so skilled in what she does. Please call her for a consult if you're anywhere near her offices. (her husband Dr. Stork, is also practicing in the same office)

Please note that this method of chiropractic is nothing like the traditional kind that takes care of symptoms temporarily with painful adjustments. I know all about that kind, having gone to them since the age of 13! The changes to my eyes are just the beginning of my healing. So many more symptoms are being alieviated with no surgery or drugs, including constant and often debilitating pain in my neck, back and jaw. As an outdoor photographer ,this was quite frustrating and depressing; especially when I was unable to do and go where I needed to, for the shot I wanted or needed to get. I was also sick and/or fatigued all the time, and one day of photography would often wipe me out for days or even weeks. I already feel years younger and now look forward to a more active and productive life.

To those of you who've been faithfully praying for me, thank you so much! Please be sure to now praise and thank the Lord for this healing He's done and is doing in my life.

Please note that the black text shows symptoms as of July 2009, the red text shows symptom changes as of October 2009, after first spinal adjustment from Dr. Mix-Stork at Stork Spinal Care, using the NUCCA method!

*Trouble reading road signs/fast food menus/printed material/Bible-only slight due to astigmatism.

*Eye pain with bright/fluorescent light-Pre-Fuchs sensitivity

*Burning/watering eyes-Much decreased

*Imaginary moving objects/shadows-While driving-Not assessed yet

*Imaginary moving objects/shadows-In the house-decreased or gone

*Watery eyes in AM-slight watering of rt eye only upon first awakening.

*Hazy vision in AM and lasting until late afternoon-Gone

* blurry vision in AM and lasting until late-Gone, except for slight, due to astigmatism.

*Swollen corneas-Gone

*Halos-around street lights and light bulbs-Much decreased

*Glare-night driving, computer screen, back lit objects & off metal objects-especially sun glaring off cars-Much decreased

*Dry Eyes-Dry, gritty and burning in afternoon/evening-Much decreased.

*Feeling of foreign matter in my eye and occasional feelings of sharp pain(like a prick) that quickly subsides. -Gone

Hindered

One of my favorite things of the year is photographing Vacation Bible School for our church. We hold outdoor Bible schools in four locations, with three in the morning and one at night. My "job" is to go around and photograph at each of the locations.

This year I was sick in bed all day on Monday, so I already missed a whole day of moments. In spite of my recent check up, I can tell that my eyes have indeed declined this year. There are things that "fuchies" (people with fuchs) see and deal with, that aren't indicated by a certain vision number like 20/40, etc... Last year, I wore my sunglasses, but had them up on my head most of the time so I could see to take the pictures. I photographed at all the locations and didn't have the pain and migraines like I had this year from the sun and glare on my eyes. I even had to take Thursady off from photographing because my eyes hurt so much and I had to rest them. They are dryer than last year, too. This is especially troubling for me as an outdoor photographer!

As a result, I didn't get nearly the number of pictures this year and I missed so many moments. (the worker kids water balloon fight, the set ups and take downs, etc...) I went home early from our end of VBS party, too. I just couldn't do it anymore. (I was also under some emotional stress this year that added to it) I missed the goodbyes with the teams that had come to help us for the week and everything. This saddens me greatly as does the fact that I didn't get to know everyone as well as in past years.

Of course, it doesn't end there. Being a digital photographer, more time must be spent uploading, backing up, keywording and post processing the images; yet another strain on my eyes. I'm still working on them and it's taking longer than usual.

I was hindered in my ministry this year but I know God will bless what I was able to capture, for His glory! I also know that God will somehow use me and what I'm dealing with to help someone else either now or in the future. I'm excited about that!

For those of you who are prayer warriors, please pray for my friend Tanda that's having eye surgery on July 30 at 11:30am. I know she must be somewhat nervous and especially knowing someone else must lose their life in order for her to have renewed vision.

Tanda, if you are reading this, please know that when my dad died, we received notice that not one, but two people regained their vision because of his donation. It was a great comfort to us to know that because of him someone else's life was made better.

Good News!

Well, I was sick on the 24th so I rescheduled for July 1st. So, today I went in for my eye appointment. Good news! My eyes have remained pretty stable since this time last year. So the saying, "prepare for the worst, expect the best" has done me well once again.

Dr. Grigg used a cool, new machine that takes an xray type image of your eye. I think it's actually a retna machine, but you can see all sorts of things and layers of the eye, if you know what to look for. haha Mine is a slightly blurry or hazy image due to the effects of the Fuchs on my cornea. The image is in color, too, or it can be changed to black and white! Awesome. Other than the Fuchs, my eyes are in good health. My prescription hasn't changed for my glasses, so I didn't have to get new ones. They only really work in the morning to early afternoon anyway. Once I get a thickness measurement, I'll know a little better how my eyes are actually doing regarding the Fuchs, but in the meantime I will thank God for His goodness to me and that I can still see the flowers in bloom (click on "flowers in bloom" to see a flower slide show) this summer!

I won't bore you with the details, but he explained how my eyes can be swollen from retaining fluids, yet still dry at the same time. Made a lot of sense to me.

Just so you all know, I would recommend Dr. Grigg and his office to anyone needing an optometrist. Even though he's not a corneal specialist or opthomologist, he recognized right away that I may have Fuchs and referred me to a specialist for my second opinion. He has taken extra time and care with me and my specific situation. He truly cares about his patients. He's even been on my blog to read up on how I'm doing and that says a lot in this age of in-and-out doctors where they try to see as many patients as they possibly can with the least amount of time and care possible. Anyway, click on his name, this blog title or on the link in my Helpful Links list to go to his website. He and his wife are actually both doctors there. It's kinda funny because I see the Mr. and my husband sees the Mrs. So, you'll have to ask my husband what he thinks of her, but I would have to guess that she's just as caring about her patients as her husband.

With our summer so busy, I am looking at August or September to go see the corneal specialist. I'll update when I get that appointment set.