Thursday, October 1, 2009

Retinitis Pigmentosa **WARNING-LONG POST**

It has taken me awhile to post something about the title of this post. Its not that I haven't wanted to, but it has been really hard for me to put down in words what to say about it. But this is like my journal and I want to remember things while I can.
For those of you that don't know, I have recentely been diagnosed with Retinitis Pigmentosa otherwise knows as RP. I will fill you in on what RP is and what it means for me.

What is RP?: Rp is an inherited progressive disorder in which there are abnormalities of the photoreceptors (rods & cones) or the pigment of the retina, which may lead to progressive vision loss. Individuals that have RP have night vision loss and they lose their peripheral vision as well. Sometimes they lose their central vision late in the course. Many people retain some of their sight all of their lives, others may go completely blind. Progressive RP is different in every case.

My diagnosis: I have been going to a very thorough eye doctor for some time now. They do every kind of test imaginable at this office, which I love because most eye drs don't do that, they just want you in and out of there in a hurry. Anyways, the tech had taken some photos of my eyes and when the dr was reading them he noticed some black spots on the sides of my eyes. Well, the black spots didn't mean anything to me at the time, but he wanted to do some more thorough testing. He had one of the techs do a test where you are looking into...lets just say a drumb. They make you wear a patch over one eye so your only looking out the one eye. When they start the test, there are blinking lights all over the inside of the drumb and they flash randomly but you have to keep looking at the light in front of you. I will just say one thing.....this test sucked! It was awful. Well the results came back and they were not good, not good at all. I was not seeing any of the blinking lights peripheraly, just the ones that were flashing in front of me. I made another appt to come back and take the same test because the dr thought maybe the tech did something wrong or it was me and I was just not cooperating, ha. Whatever.....
The next time I went back, I took the same test with the same tech, clicked the button whenever I saw a light (I was trying so hard) and still the results came back bad. Well now the dr was getting worried and it was freaking me out. He decided he wanted to give me the test to see how I did. Just to make sure I was positioned right, was clicking the button and what not.
After that test I was done with it. I didn't want to take it anymore. The test results came back bad once more. I still was not seeing the blinking lights out of my peripheral vision. The dr decided to send me to a retina specialist because he thought that my retina was thinning. Thinning of the retina didn't sound so bad, right?

Que to the retina specialist. I had my mom go with me to this appt because I didn't want to go by myself and I was a little nervous. I know...pathetic. I'm 40 years old and I still make mom come with me. :) He pretty much did some more thorough testing, said alot of really big words, took tons more pictures, which were so cool! At this appt the retina specialist pretty much diagnosed me with RP. He kind of explained to me what it was and he talked to me a little about treatment. But the treatment would come later. I now had to go to the Moran Eye Center in SLC for more testing and a "full diagnosis".

The Moran Eye Center- Oh, I was so so nervous going to Moran. I had myself worked up, was nervous and sick to my stomach. Blech. First of all, the Doctor was loopy, ha. When I say loopy, I mean so loooooopy. Second of all.....more testing! I was sick of tests at this point.

Mom and Brittany came with me again on this appt because I knew they were dilating my eyes and there was no way I could drive home, let alone find my way home. The tests here were a little different, but probably more thorough. I saw that dreaded "drumb machine" in the same room where we were and was freaking out cause I did not want to do that ever again! Anyways, he numbed and dilated my eyes, like 3 times I swear. After they were dilated, mom and I had to sit in the same room in pitch blackness for 15 minutes to get my eyes used to the dark. Ok weird. So here we are mom and I....talking to each other in the dark and not being able to see each other. It was just weird.

After 15 minutes he came back in and he had to wear this lamp on his head so he could put in these ghetto contacts. When I had to take my "real" contacts, that was a story in itself, ha. I will just say i was nervous and dropped one on the floor...oops..... Back to the ghetto contacts...... they were like suction cups, but really soft and they had these square parts around them that is supposed to hold your eyelids open. Its hard to explain, but you get the idea. So he put those in, and then I had to look into a drumb machine again, but this time there were only 3 lights that blinked and I didn't have to push any buttons. We did it once in the dark and once in the light. I had my results right after the test and it was poor, which means the retina specialist was right and I did have RP. Boo!

Treatment- I got a call from the retina specialist the next day telling me that I need to make an appt with my regular dr to get a liver function test and talk to her about Vitamin A. If my liver is ok and I am put on Vitamin A, it does things to your liver so they have to monitor it more. The Vitamin A is supposed to slow down the progression of RP, but only like 2% a year.
Until I talk to my regular dr. and the retina specialist, I don't know that I will take the Vitamin A yet. I know that my body is different than everyone elses and the Vitamin A probably would be ok, its just that I have had a traumatic experience with Bethies sister going blind from taking minicyline with Vitamin A in it. Its hard for me to see Amanda the way she is. I know that she is fine, but the experience that she went through was terrible and I don't want to be like that.

The retina specialist told me that I should have my central vision for a very long time. How long that will be, I do not know. Right now I have a very hard time seeing at night. I have very little peripheral vision. I'm worried that I will lose some of my driving priviledges and I don't want to be dependant on other people. I know that people love me and they would do it for me, but its hard. I didn't want to write this post to have people feel sorry for me. I know that I will be ok, I just know that I will need to make some adjustments. I wish things in life were a little more easier, but sometimes we are dealt things to make us stronger. We shall see....
I will try and keep you all posted on things as they transpire.

Have a great weekend! :)