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".

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.

"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.

"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.