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Not so quick medical update

Yeah! I’m back in the chair!
My favorite nurse isn’t here. What can you do? I’ll take the good with the bad.

So quick medical update. I have another eye doctor appointment today. As well as my infusion which I am currently at. So I am going to end up spending a lot of time on the road. Why can’t all of my specialist be closer to my house? I should have just taken the kids out of school. Because while the docs are no where near where I live they happen to be down the road from each other. Ah, well, I’m trying to be a good mom. It’s a good thing I like driving.

They took more blood today. I’m being tested again for the JC Virus antibodies. Keeping our fingers crossed that it is still negative.

On the eye; I’m not sure what the last thing I said was. The beast has gone back into it’s hole. However, while the medicine was attacking it was also preventing my eye from healing. The doc put me on super strength “visine” type drops. Apparently there was now just a giant hole in my Cornea where the beast was taking up residence. The last time that I went to the doc he said that it had healed 95%. 95%! *said with exasperation” “so come back in 2 weeks”
I was like “doc, this is costing me $30 every time that I come. Can’t we just say that it is 100%?”
Then I got the “well don’t you want to be sure so that we can schedule the surgery?”
UHG!
Yes. Fine.
So I am headed back there today. Hopefully I am at 100%. Then we can start scheduling things for the surgery. Doc said a meeting in September to make sure that all is still well with my eye. Then I get put on the transplant list and I just have to wait for an eye to become available. Yes, I know what that means. I am actually waiting for someone to die. They say that it’s not like waiting for an organ though. I can use anyone’s. There are no compatibility issues because there are no blood vessels in the cornea.

I told my little brother that after the surgery he is going to have to stop making fun of me. No more cyclops jokes. He said oh no, now a whole new possibility of jokes come up.
“I see dead people!” As he is cracking up.
I can’t win.

Sent from my iPhone

 
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Posted by on April 1, 2014 in Life with MS

 

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Good Day

You know that song? The one with the line “You don’t know you’re high until you’ve been low”? Well, truer words have never been spoken. And since I feel “low” most of the time, the “high” is incredible for me! Today I have been dancing and singing around my house cleaning up a storm. Literally. An awesome storm rolled through. There is nothing like a good thunderstorm when you are feeling good to just make your day.

I am ridiculously excited about having the eye surgery. I still need to do more research. After my appointment this week though I have a little bit of knowledge:

  1. They sew the new cornea onto your eye. That sounds super scary.
  2. My Doc refuses to put me to sleep for the procedure. Oh and yeah I begged. Warned him that I may screw it up if I am coherent. He was confident that I would do fine. But again… SUPER scary. All they do is give you local anesthetics and a mild sedative. AAAHHH!!!! Ok, don’t think about it. The end result is too important!

I also realized another benefit. I could wear make-up. I know that that sounds strange, but try putting eye make-up on without looking. This is how I have to do my left eye. It never turns out good. So I just don’t do it. But when I have it professionally done for events I look HOT! So….. I’m excited about that. 🙂

At my last appointment the doc said that the virus isn’t gone yet. (I knew that) So he has me coming back in another 2 weeks. We are all hopeful that it will be gone by then. If it is then he is going to put me on a pill to make sure that it stays away for the next 6 months. Then we are hopeful for an August September surgery!!!!! It will be my birthday present. 🙂

Now I need to read up about recovery and what not.

Oh and other super good news? The surgery could/should totally cut the virus out of my eye! I may never have to deal with this again! *Insert me jumping up and down*

I decided that since we call MS the “MonSter” I’m going to refer to the virus in my eye as the Beast. That might make future blogs a little bit easier.

 

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Eye Problems?!? What eye problems?

I was going to write yesterday, but I used up all of my spoons celebrating! 🙂

They doctor’s appointment went very well. I don’t know why I didn’t just go to him at first. I guess I just didn’t want to deal with it. I just wanted it over. How rare could this really be? I’m sure that anybody in optometry could help. I was wrong. I was so wrong. When I went to the first doc I even asked, “Well this is pretty common now, right?” And he said Yes. So I figured I was good.

Whith my specialist I asked the same question and he said no. I am still one of the few. The first guy just didn’t want to make me feel weird. TOO Late!

Any who. The doc has me on new eye drops. They are actually gels. Or at least he kept calling them gels. Which is a little scary. Since I am still putting it in my eye 5 times a day. Or rather I will be when it comes in. They had to special order it. “It’s not something that we usually carry.” Was what the pharmacist said. So I will be on these for 2 weeks and then it is back to the docs.

And then the most exciting news. The news that sent me for a celebratory coffee and a little bit of dancing in a Starbucks. After the virus is quiet for 6 months to a year I can get a new eye!!!!!

Ok so not a whole new eye. I will still be my beautiful brown eyed self. 🙂

I will be eligible for a cornea transplant.

Sure, sure, sure, that sounds scary. Or at least I think that that is what my mom kept saying while I kept jumping up and down saying “Yeah!” in hushed screams. 🙂

Ok that’s enough smiley faces for one blog.

I am really, really excited. I don’t even know what it is like to have normal vision in both eyes. It has been bad like this since I was 7. I actually have started to wonder if it will make a difference. Is my left eye compensating so well that I won’t notice? I don’t know. I keep closing the good one and trying to focus with just my right eye, almost to remind myself how bad it is. It’s bad. I remember a time that I used to do that while reading.

“If I close my left eye can I still read this page?” For a while I could. Now I absolutely cannot. It’s a miracle that I can tell there are black fuzzy uneven lines that are PROBABLY words.

HAHA! I can look out of my telescope with my right eye! I know that sounds like a strange thing to be excited about. I always feel like such a freak using my left eye for those things though. Cameras, video cameras. Oh and right now, I can’t see 3D. It is totally lost on me. It just looks like a normal movie. Or when people have the 3D papers or shirts. Nothing. I don’t see anything different. In Disney people are all like “Wwoo” when something “Flies out of the screen.” I will totally admit that I pretended right along. But there was nothing. But after the surgery I’ll see it!!!!!!

OK I am totally getting ahead of myself. First thing is first. I need to put the virus back in it’s little hole. Then I need to do some super research. I don’t want to be scared or nervous about this. But I want to be very well informed.

 

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