Summary of 1st surgery & 2nd surgery in 4 days!

Well, it's time for another surgery and I never finished blogging about the first one.  I will write a short summary to update you all, but will have to leave out some amazing details.

My DSAEK turned out to be a DSEK.  Not a huge difference, just that the automated cutting of the donor tissue is eliminated with the DSEK.  It went well.  I began to panic a bit during the surgery as I felt a bit of pain so they ended up putting me into a deeper sleep.  That's the last thing I remembered.  The recovery was the worst part.  Due to chronic back, neck and jaw pain from injuries sustained in a car accident in 2003, the lying on my back for the first 24 hours after surgery was horrible!  Excruciating pain!  I finally got the right amount of meds to be able to sleep, but every 3 or 4 hours, I woke up in pain.  I was only allowed to be up for 20 minutes to use the restroom and eat.  Then, it was down 2 hours, up 2 hours for a few days.  That was more bearable.  The day after surgery, I went in for my post-op appointment and they took the bandages off.  It's not like in the movies where they take them off and you can miraculously see clearly, although I could see more than most people see that soon.  20/200 was my vision.

My vision was slowly improving, but at my 3 month, it has dropped from 20/40 to 20/70.  Not good.  There were no other signs of rejection or anything though.  No obvious reason for the change and even though I could see better in the exam room, the glasses didn't seem to help at all out in the lobby.  This was discouraging.  They were beginning to suspect the graft had failed and the possibility of a re-do on the same eye, rather than doing my other eye was discouraging but real.

A few weeks ago, I got checked again and the glasses are now helping, Praise God!  Not as much far away, but very clear for reading and seeing road signs and such for driving.  I'm hoping to get my other eye done this Tuesday.  I will see what Dr. Terry says at my pre-op appointment and 6 month check up on my surgery eye.  He was wanting to do a DMEK rather than a DSEK when the glasses weren't working.  I will make my final decision after getting his opinion.  Please pray for that decision, that the choice would be obvious by then.  The DMEK requires tilting the head back off the bed as well as the lying on the back for the first 24 hours and then the 2hrs up and 2 hours down is for more days.  There's also a chance of needing re-bubbles (from the tissue not adhering as well-my mom had 3) which puts you back to mostly down and 20 minutes up for a break and eat.  My mother was lying down for a full 10 days with her second DMEK.  I really don't want to go through that.  I do have meds though to hopefully help me get through whatever is necessary.  I know God will help me.  My husband will be there with me again.  He will read to me, get me whatever I need, make our meals, etc... He is such a blessing.  I thank God for him.  Well, that's my update for now.

Please continue to pray for me and for us as we travel.  Maybe my husband can update my blog for me.  We'll see.  I would love to hear from friends and family while I'm there.  Message me on facebook for the address.  :)

Part 1-Home Away from Home

I would like to thank all those who've been praying for me and my vision; whether you've just begun, have been praying for years, since my diagnosis, or will start today; thank you.  You will never know what your prayers, concern, gifts and cards mean to me.  May God greatly bless you for remembering me.  I would ask that you continue praying. 

Sunday, Feb 3, 2013-Today, we left Idaho and arrived at Green Gables Guest House (built in1908), in Portland, Oregon. The guest house is a home away from home for patients and family members who live outside of the Portland area. It is very affordable, at only $25 a night. It's kind of like a bed and breakfast, only you make your own meals. There are volunteers who come each day to check on things, clean, and make up rooms for the next guest. There are even volunteers who keep up the grounds and flower garden. Some of these people are actually paid, but I'm not sure which ones; probably the cleaning people.

The roads were clear and dry, even over the mountain passes, one of many answered prayers. In addition to my husband, my mom is with us.  She will get her 3 and 6 month check up (for DMEK surgery she had on her eyes) with Dr. Terry tomorrow, when I get my pre-op appointment and will fly home after my surgery on Tuesday. I'm glad she will be there for my surgery.  

We got all checked into our rooms at the guest house and headed for Tillamook, Oregon.  We stopped in at the Tillamook cheese factory and had a great time sampling the cheeses, watching the 40lb. blocks be cut into smaller ones and then packaged.  We checked out the gift shop and bought a few things.   

We also had ice cream at their creamery.  Ohmygoodness!!!  It was so delicious!  I'm hoping my favorite flavors are available in our stores at home.  Back in Portland we had dinner at Stepping Stone Cafe, made popular by the show, "Man vs. Food".

Peaceful-5 Days before DSAEK Surgery

1/31/13 Thursday

Well, I’m now 5 days away from my surgery.  I haven’t been worried about the roads like I was before I started praying, in faith, for God to make clear, safe paths through the mountains for us.  Now and then a tiny worry will enter my mind and I just say, “Nope, God will clear the way and be with us.  There is nothing to worry about.” Same with the surgery.  I know so many people are praying for me…I really can feel it, a total peace from God. It’s awesome!  I’m excited to see better, even though it will be one or more months before it clears up for good vision after the surgery.

DSAEK surgery-weather and roads?

1/25/13 Friday

The weather and road condition for our drive to Portland for my DSAEK surgery is something the devil is using to try to cause fear in my life.  I just keep giving it to God, knowing that if He wants me to get there at this time for my surgery, He will clear the way.  I’m trusting Him to do that for me.  My awesome husband is taking two weeks off of work to be my chauffeur and “nurse”. 

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.