Rituxan

Well it has been 3 months since my last trip to Rochester and I missed it so much that I decided to fly back this time. We are crazy busy at the west farm with irritating and haying that I decided to fly out of rapid into Minneapolis and have my brother Adam pick me up and take me to my appointments this trip.

So this is what I found out.... my left eye (my good eye) is still getting worse my blind spot is getting bigger and my thickness of my retina is getting thinner which is a concern. They want to stop this as soon as possible. My retina specialist and my rheumatologist suggested that I try an IV treatment of rituxan, which would only be two treatment two weeks apart... this drug will kill all of my B cells and will hopefully kill all of my bad antibodies that are attacking my retina and we will be in the clear! It will take 6 months for my body to rebuild its own B cells so I will not have an immune system for awhile. Sounds like fun!!!  If this doesn't work we are back to square one. We are waiting to hear back from insurance to see if they will cover this form of treatment as it is not typically used for what i have. I am a mystery!! I will keep you posted on when and how my treatments go. thank you for all your thoughts and prayers.

I had a great visit with Adam, Nicole and Oliver! We will have to do it again very soon!!

Up Date

The side effects of the steroids have started to appear. Being on 60mg for a month has taken its toll... My face has started to fill out, and the sweating has started. Oh the joys of meds.

I have not noticed and changes in my eyes, I still see the flashes of light in my left eye. My Doctor called to check up on me which was nice, she recommended that we start decreasing the steroids to 50mg for a month.  I got word that I will be starting IV treatments after I am done with the steroids--- I knew that it was a 50/50 chance that I was going to have to do this but it is still a hard pill to swallow... It sounds like I will have to do it once a week--- I will be taking a drug called Rituran. I will learn more when I go back in July.

My Mom came and saw me for a few days which was great!! We had a GIRLS day!!! We don't get to do them very often during the summer since we are at the west farm. LOVE you MOM!!!

We are staying busy at the farm, we are going to start cutting our first cutting of hay today!! I will be the lunch and dinner lady!! Hope you are all having a good week!!

How things have Changed

My Life has Changed so Much since all of this has happened I will just mention a few in this post.

My doctors back in October 2013 told me that I should not be driving. I made this decision before the doctors told me to... I did NOT feel comfortable and thought that it was not worth taking my life or someone Else's life.  I still have my drivers licence and will continue to get it because in South Dakota they do not test your Peripheral Vision during the eye exam.... Which I disagree with. I could go on and on about that but I won't..

It was hard to loose my independence of going when you wanted, helping out on the farm and feeling needed. It has been  a hard transition but I have a great support system that takes me when I need to go somewhere. You know who you are!!! Thank YOU!!!



They say when you loose a sense your others become more keen.. I support that 100% My Hearing has increased dramatically.  If you see me out and about you more that likely see me looking like this....

 

The Hat and the sunglasses are to help with my light sensitivity and the ear phones are to block out extra noise.  On one occasion I had someone ask me if I was hungover from the night before????? I said "NOPE I have an eye disease." That shut them up...

I have a hard time following conversations with more than one person, so if i leave in the middle of a conversation it is not because i don't want to listen its because I can't handle more than one person talking at once. It is just easier for me just to leave for a minute. Please don't take it personal its just the way it is.

 

 

 

My Breakfast and My night time snack consists of Pills and more pills.... With pills comes all kinds of side effects.. I just hope that they work and that my eyes don't get any worse!!!

 

I hope that this gives you a bit more of an understanding of what I have been through.. Never take anything for Granted!!!

Mayo day 2

Day 2 at Mayo we had scheduled Fundus Photography, Optical Coherence Tomography (OCT) and then meet with Dr Smith.


FUNDUS PHOTOGRAPHY: is the creation of a photograph of the interior surface of the eye, including the retina, optic disk, macula and posterior pole.

I know it is hard to see but you can see all kinds of little dark and white spots those are scar tissue that  was damaged from my multi focal clortitis--- you can see that it makes a perfect circle--- that is where most of my peripheral vision has been lost.  These Spots have not changed in a long time which is a good thing..... I guess????  (sorry that they are in black and white they are much detailed in color)

Left Eye

Right Eye

 

Next I had a Optical Coherence Tomography (OCT) done.

OCT is a non-invasive imaging test that uses light waves to take a cross-section picture of your retina the light  sensitive tissue lining the back of your eye.

 

I did not get a copy of my OCT but mine did NOT look like this. I hope to get a copy to share with you at a later date. My tissue in the back of my retina is very thin. Its hard to explain without my picture.

 

 

 

Next we met with Dr Smith and she was very concerned about the new flashes of light that i was seeing as well as the new blind spot in my left eye. So she ordered more test--- blood work, an Angiograpy and a MRI of the Head focusing on the Optic Nerve.

 

The Blood work all came back negative!!!

 

The Angiograpy- is an X-Ray test that uses a special dye and camera to take pictures of the blood flow in an artery or vein.

 

 

this is my left eye

the picture on the left is the veins that you can see on the surface

the picture on the right is the veins that are inside of your eye.

the black dots are scar tissue.

 

My MRI Also came Back Normal!!!

 

We met back with Dr Smith and she said that their is something going on..... The Autoimmune Retainapathy is affecting your Left Eye--- we are not sure why???

We are going to put you back on High doses of Steroids to try and stop it and since you can not be on steroids long term we are going to look into having you either take a shot daily or do an IV treatment once a month we will see you back  in July to see what method will work best.

 

So NOW we Wait.... and hope for the best!!!

 

 

 

 

 

 

Mayo day 1

I started noticing some new flashes of light in my left eye (my good eye) so I made an appointment to see my retina specialist. We made the 10 hour drive from our west farm and settled into our hotel for the next few days. The first day they scheduled a visual field and an Electroetinogram of my eyes.

 

Electroretinography (ERG) is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Specifically, in this test, the light-sensitive cells of the eye, the rods and cones, and their connecting ganglion cells in the retina are examined.

 

What happens during the Electoretinogram test is they put you in a dark room with patches on your eyes for 30 minutes, put numbing drops in both eyes and put these little contraptions on your eyes then you stick your head into a machine and you see all kinds of different lights after about 6 different sets you sit in the light for 10 minutes and they do it all over again.

 

During the visual field test they usually do two different test one where you sit with your head in a machine and when you see a light you hit a button and the other test is where you are just sitting in a chair looking at a wall and you tell them when you see it and when it disappears. Oh and they always cover one eye or the other.

 

 

 

These are my latest results, as you can see I have NO peripheral vision in my right eye... and in my left eye the weird shaped blob with lines in it is a brand new blind spot that was not their three months ago.....

We will have to wait and see what day two at mayo brings us..

The Beginning

My life has changed so much in the past two years. I went from being in a tractor all day everyday feeding cows or doing field work to sending days at the doctor and taking pills.

I will give you a little bit of a back ground of what I have, back in 1998 I was diagnosed with multifocal choroiditis, my Dr at the time thought I got somehow got a parasite while I was traveling overseas. This Parasite attacked both of my eyes my right eye more then my left. I lost some peripheral vision in my right eye. It has been stable ever since.

In August of 2013 I noticed that something new was going on with my vision. So I went to my local doctor in Mitchell, he sent me to Sioux Falls  where he sent me to Mayo Clinic in Rochester. After a long few month of waiting we finally found out that I have Auto Immune Retinapathy. Auto Immune Retinapathy is where my antibodies are for some reason are attacking my Retina. Usually with this disease is related to some form of cancer, I did all the test that they recommended for me to do and they all came back negative. which is good i guess.... I just which that I know why???? Why??? Their has to be something that we are missing but what.. I have TWO retinal specialist at one of the best hospitals on my side trying to figure this out.. there has to me something that we are missing... We took trips back to Mayo every 3 month and everything was stable until.....