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.  :)

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.