I am not okay….
As of today, I am getting closer to my first eye transplant. The reality is hitting me a bit hard tonight. I am and will be “the Storm” but that doesn’t mean I don’t stumble. I have yet to tell Tom the specifics of what I’ll be tackling but will the night before surgery. He has a lot on his plate with us trying to get RV inspection, if all goes well, get the RV back to Virginia, etc along with my medical stuff as soon as he gets back.
Anyway, because of the type of cornea transplant and the severity with the rare eye disease, I am preparing to make a major life change. For you that know me, I have always had a weight issue but in order to be successful at this surgery, I must be the healthiest I can be so as of tonight, I’ve had some time to myself to think what I need to do to get prepared mentally and physically. I will be changing my diet, exploring some healthier options in eating and will lose weight as I am going through this. This will be a plus most definitely, but this time it’s not about how I look, etc, it will be about living well, being the healthiest I can be for both transplants and adding years to my life.
As I said before, I try to carry the burden of worry for my loved ones but will talk to Tom the night before surgery and will release my blog which is actually my journal. In the meantime, I need to focus on me and getting in a good place to recover over time. So here I am, making myself accountable.
I will be honest, I have great fear, who wouldn’t have, but I will keep myself strong in Gods Power. I am a stubborn, strong person also, but sometimes need to just get things off my mind. This is one of those times.
Once my surgery is done, I will be spending the next 5 days flat on my back only to get up to go the bathroom, eat a little bit and take medicines. I begin with liquids only and soup broth. I will slowly eat as I can tolerate it, etc. I was told I will experience horrible exhaustion. That will last for some time. I can not bend over, lift, be around dust, smoke, etc. I may not have vision in my eye for possibly months.. It can come and go with many different changes which is normal.
The eye specialist in KS and again, in VA both told me this is a big deal. The reason why I have to lay flat for so many days is my whole cornea will be taken out. They put an air cushion they call it, similar to what they use in cataract surgery. This keeps the cornea in place for it to stay where it is supposed to. I will have 8 or 10 stitches that will go around the cornea. Those stay in until 9 to 12 months. My biggest fight will be rejection. The first few months after surgery are the most important, especially at first. My immune system will fight the new tissue not recognizing it as mine. It will fight like the devil himself, but I will be on an immune suppressed steroid 4 times a day. At this point, my greatest battle will be that. That can bring on a lot of different circumstances, more surgery, etc. This is where I will feel wiped out and will be at an exhaustion that will make it difficult to just stand to wash a dish. That will get better and I am hoping since the rest of my eye is very healthy, this will put me ahead of the game. Also, I really do have a strength inside me that you won’t find often and even though I’m scared tonight, as of tomorrow I’m starting my new journey of being healthier than I’ve ever been,
This blog allows me to get out the thoughts on my mind. I also know that it helps me stay strong but I have found after this last 20 years fighting this disease, if it helps one person feel better, or get educated or can find strength, it will be worth it. The name of my eye disease is Schynders crystalline corneal dystrophy. It is a genetic disease that has been passed down from ancient dna from Sweden. I have been a case study in Kansas for eye specialists so I approved them sharing my records. It is so new that they don’t have any records to know what the future will hold for me with this disease or if it could come back in my new cornea. But take it from me, once you have seen my vision deteriorate rapidly even more than my family has an inkling of how bad it really is, you will fight for saving it, regardless of how scared you might get at times.
I am going to go work on a food plan and start reading and learning about what foods will be healthiest to eat, what things I need to do to make recovery easier, and take a deep breath and prepare. I will keep my thoughts focused on the RV, our new life and regardless of how long it takes me, I will succeed. As soon as my doctor says I can heal in our RV, I’m heading there. Nothing is keeping me down!
Again, I will have released my blog the day of my surgery. Once I can type with my other eye, I will write some more but I’m sure it will be much shorter lol
Until then, Keep me in your prayers. I need those prayer angels working to help me while I work on the physical part of it!! :)