I know it's been much too long since I have updated and it's been because so much has been going on. Last year, 2010, during the spring and summer I thought I was doing really well. I was planning on going back to work and even going back to school. I was very excited and trying to work things out, thinking about what I wanted to study, which college I'd choose, things like that. I had a few schools I was interested in and that were interested in me. Then in August, I'd pretty much made my decision. I'd chose my major and which school I wanted and was doing the FAFSA and going to apply for financial aid and everything so I could start in October. But during August I started having problems. I had an episode, while we were on vacation where I couldn't breathe, and I thought it was my asthma but it wasn't and I didn't know what was wrong. It was really scary. I started having other problems too, my speech and swallowing started going downhill again really quickly. Next thing I knew I was in the hospital in September, from September 29th - October 24th. My Myasthenia had gotten so bad that I went back into crisis. Which isn't supposed to happen (which my doctor told me in 2004, the first time I went into crisis). If you do ever go into crisis it's only supposed to happen once, but for me, it happened again, and this time it was even worse than the first time. They decided to do 5 treatments of Plasmapheresis or PLEX (plasma exchange) but while I was there we discovered that both of my hips were fractured from the years of Prednisone I'd been on. So, I also had surgery to pin my hips. Which caused me to get PE's in my lungs and I ended up on Coumadin for 6 months. I also ended up becoming severely anemic and getting a transfusion, but I had a bad reaction to it and it had to be stopped. I was very tachycardic while I was there and was eventually even put on a medication to help my heart rate go down. They also gave me a Rituximab treatment while I was there but it made me get worse. I got a PICC line placed at some point because my veins are so bad that they couldn't draw blood any other way. I was getting the plex treatments every other day for quite a long time, even after I was discharged from the hospital on 10/24. The night I was discharged I woke up and noticed that there was blood all over my arm and my picc line was bleeding. I went to my parents room and alerted my mom who drove me to the ER. They stopped the bleeding and assured us that it was ok and we returned home. I was admitted again on 10/31 with worsening symptoms and this time my breathing was the main problem, I could not breathe. I was "subsequently transferred to the NSICU and intubated on 11/2 for acute myasthenic decompensation secondary to aspiration pneumonia." I was extubated on 11/7 and transferred to the floor on 11/9 and remained stable for a while. I received 6 doses of plex and they kept me on prednisone as well and felt that I was improving. I received my second dose of Rituximab on my discharge day, 11/16. I was admitted again on 12/1, this time it started with my adrenal glands having shut down because we were trying to get me off of the prednisone. I was running fevers, vomitting, I couldn't swallow, I had diarrhea, and was totally incontinent. I was very tachycardic and was transferred to NSICU the next day, that night I couldn't breathe again and was intubated again for "potential respiratory failure." My hemoglobin kept dropping and I was transfused several units of blood. Then I spiked a fever and they suspected an infection and did a CT of my chest/abdomen/pelvis, which was horribly excrutiating because I'd just had surgery on my hips. But they didn't find anything. They gave me stress dose steroids for the adrenal insufficiency. They attempted extubation on 12/7 but it was unsuccessful, I was intubated again 2 hours later. They started to give me plex again, every other day and saw improvement again. I was extubated on 12/11. I was transferred to the neuro stepdown on 12/14 in stable condition. At some point in this admission they switched me to Dexamethasone instead of the prednisone. I was discharged on 12/17. I was admitted again a few days later I think, I'm not exactly sure when, I can't find my hospital papers, I have so many. But I think I was intubated again that time and I wasn't discharged until sometime in January, I think it was January 2nd. Then I was admitted again 1/5/11 - 1/7/11 and 1/16/11 - 1/19/11 and then once or twice again after that until the end of January. I've been getting plex treatments the entire time. At one time it was every other day, then every 3 days then for a long time it was every week and recently it switched to every 10 days and in a month we're going to try and go to every 2 weeks but it's so scary. When I finally got out of the hospital in January, I could barely walk, I'd lost around 45 lbs and I still wasn't doing very well. I eventually was able to get into physical therapy and the plex helped sometimes. But the dexamethasone had a lot of bad side effects, mostly, I gained a lot of weight from it. I hated it. I'd worked so hard to lose weight from the weight I'd gained already from the prednisone and now I'd gained all that back and more from the dex. My depression soared and I didn't want to do anything but my doctor put me on Lexapro and that really has helped me. I ended up in the hospital again this year in July and August, one time for adrenal insufficiency again, but during that time they switched my steroid again, this time to hydrocortisone, and I like this one much better, it has way less side effects. Right now I guess I'm doing a little better but I've had so many setbacks it's hard to look forward. But, with God and my family I can make it through anything! Please feel free to tell me your stories or give me your comments, if you want more details or anything, just let me know. God Bless! ~ Arwyn