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I survived!

First infusion down. The only complication was that the RN that did my drip left a bruise. Makes me sad. Also it took 3 hours, not 2. Now I have scheduling problems. So for people thinking about Tysabri infusions, a quick walk through.

The room was nice. Yes you can bring snacks and drinks. I brought a venti gingerbread latte. MMMMM!!!!!! I decided that I deserved that today. So did my mom, she treated. I brought her too. They referred to her as my cheerleader. 🙂 I got to sit in a big comfy black leather recliner. There were about seven other chairs in the room, and yes they were all full. Every chair gets it’s own flat screen t.v.. I didn’t turn that on, so I don’t know what types of channels that got. There was an extra chair for a guest with each recliner, not as nice, but still a place to sit. Where I felt that they could have improved; they could have added a kurig, like they had in the waiting room, and free WyFy would have been nice. I know I ask too much sometimes. I just figure if I am spending $800 a visit (not including the drug), there should be some creature comforts. There were muffins and cookies though. I didn’t eat any of those, but it was nice that they were there. First thing that they did was check my vitals. (temp and blood pressure) Then they put in the IV. Then they called the lab and told them to mix my medication. I didn’t realize that the medication required mixing, that made me feel like I hadn’t done enough research, but maybe I just forgot. That took about 15 minutes. Before they gave me the infusion, they gave me a Claritin to “ward off” an allergic reaction. When my medication came up from the lab they hooked it up to my IV and I was off to the races. Or for a nap, depends on what you want to do I guess. 2 of the other people in the room were sleeping. One brought a portable DVD player and was watching a movie with headphones. One was watching the news on TV. I played with my iPhone and talked to my mom. A definite must to bring was a blanket. I thought that it was a little odd, cute, but odd that I got a box in the mail with a blanket and carrying tote from Biogen after I was officially signed up. Well today I realized how vital those pieces were. Not only did I use the blanket, but I stole my mom’s sweatshirt. I was freezing. The Tysabri drip took an hour, and then they switched it out for a bag of saline that took a half hour to drip. After that they checked my blood pressure again and made me stay for another 15-20 minutes to make sure that I didn’t have any bad reactions. Then I set up my next appointment and off I went.

All in all everything went very smoothly. My biggest problem now is scheduling. The infusion center is only open during the day on weekdays. So I am going to have to ask for help with the kids. I hate that, but there doesn’t seem to be any way around it. And taking Noah out of school one day a month is unacceptable. 😦

 
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Posted by on December 6, 2011 in Life with MS

 

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The Decision

There is an enemy among us. We first noticed it a year ago. They are growing in numbers and destroying our defenses. We tried to get them to change their ways and come back into the fold. They refused. I think, no I demand, as the queen of this domain that we need to take stronger action against them. I have decided that it is time to pull up the drawbridge. I’m not sure how we will weed out the ones that are already here, but they will be scared. There is no help coming from the outside now. They are all alone…… The citizens of this fair land can now rest easy knowing that the walls are now impenetrable.

 

I have decided to go on Tysabri. Yeah! JCV I dare you to show your ugly face! I’m ready!

I can’t wait to feel “normal” again. I just started the paperwork and hopefully it will all be processed rapidly and I can start as soon as possible. I did a healthy amount of research on both Gilenya and Tysabri. And while they both seem to be decent drugs when it comes to less lesions on your MRIs and less symptoms, Tysabri does seem to come out on top. However that is not why I made my decision. Oddly enough, being the sceptic about side effects that I am, you can’t even blame that for my decision. It was the actual effects of the drugs that scared me. As far as I was concerned, my decisions were instant death or slow horrible sick all the time because I have no immune system death. What made me decide to choose Tysabri is the fact that while on this drug I will be constantly monitored. The infusion center that I am using, actually it helps that I joined a study, does blood tests every time that you have an infusion. The study that I joined is about the blood tests. They are monitoring people’s reactions to Tysabri. Right now the research is very promising for me. It says that 0% of people who have come back negative for the JC virus have had any problems with it within the first year. It also says that .03% had a problem with the JC virus who were tested positive for it in the beginning. Again that is all within the first year on Tysabri. My blood test just came back negative for the JC virus. Yeah! I am very confident about taking this drug, at least for the first year. Who knows, maybe in year something new and less life threatening will come out. The drugs for MS management have been coming down the pipeline pretty quick within the last couple of years. I am feeling very confident about my future right now. Which is not an easy thing to talk yourself into, especially since every MRI I have shows more lesions. 😦 Hopefully that is all about to change.

Right now I am looking forward to a Christmas where I am not depressed and I have energy to run around with the kids like I used to. Also if the dizziness went away and I could enjoy a spiked eggnog without getting sick, I would really appreciate that too.

 
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Posted by on October 30, 2011 in Life with MS

 

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