Hi Everyone! I’m home from my 2nd hospital visit. I’ve been home about a week and I’m starting to feel a little better and I wanted to give you an update. I've got my macbook now, so I can make my font really big, and I can use the computer now without my daughter helping me.

First off, I want to say thank you to the Guthy Jackson Foundation and to Victoria Jackson for what she and the foundation have done to help us. This website has been an invaluable source of resources and support for me. I also want to thank Gracie for her encouragement, her tireless efforts to help NMO patients and their families, her love and concern and for her updates for me while I was hospitalized. Gracie, love and hugs to you! XOXOXO

I especially want to thank our NMO family and those of you who have prayed for, encouraged and thought of me. The support has been such a blessing during such a scary and difficult time for me.

I’m so thankful to God for His provisions and for my doctor, whom I believe has done everything possible to help me. I am so incredibly thankful and grateful to him, my NMO specialist, Dr. Bruce Cree, at UCSF. He’s a brilliant, dedicated, compassionate doctor....I am so blessed to have him for my doctor. He has gone above and beyond to help me. I’m so blown away by the stellar care I have received from him. He truly has a heart to help his NMO patients and he has been here for me through everything. He’s truly wonderful and I couldn’t get through this without such a supportive and exceptional doctor as him.

I was in the hospital the 1st time for 11 days having plasmapheresis and iv Solu-medrol for optic neuritis in both my eyes and I ended up with about 18 blood transfusions because my body had a rough time with it.

I came home and after about 4 days, I woke up with stabbing eye pain and ended up being being re-admitted to the hospital. 
Since I had just had 8 rounds of Plasmapheresis, they didn’t want to put me through it again, so they put me back on high dose iv steroids in an attempt to stop the inflammation in my optic nerves. after about 4 days, I still had stabbing eye pain and I began to have part of the left side of my left eye go dark. 

At that point my Dr. suggested a drug called EPO (Erythropoietin) in an attempt to stop the attack. Though this drug has been around and is used in the treatment of cancer, It had never been used for NMO at UCSF. My insurance of course denied the EPO saying it's experimental and has never been used for NMO. 

At this point, I was losing vision in my eyes and I was stressed out that my insurance denied my treatment. I was praying a lot and Immediately after the denial, Dr. Cree called a peer to peer review with the head administrator of my insurance and he convinced them to pay for my treatment!! I told you he’s amazing:) PRAISE!!!!!!!!! I was able to get the EPO for 3 days of infusion treatments. So, I’m the first NMO patient at UCSF to have EPO.

Now I feel like we did everything possible and I have peace about it no matter what happens with my vision. I’m just so happy everything possible was done.

So, now I’m home, healing, hoping and waiting. I truly believe that in time, things will improve. I already have some slight improvement in my right eye which is fantastic, so I believe that the plasmapheresis IS working and that I need to be patient. I also believe the EPO is working because my left eye is the same. There has been no worsening of my vision or eye pain. I have hope and peace that things will improve slowly over time. I feel very blessed that God is in control and things will get better:)