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At the infusion center, what do you bring?
Well, here we go! My first of two infusion days each four weeks is this morning. Each day I spend about 4 hours with my friends there, but I’m pretty much left to provide my own entertainment. You’re asking what I take, right? My main bag has a lap blanket, a few Gluten-free snacks, my wireless headphones, and my iPad. I take a secondary insulated bag, for my water. It has a pocket for my pill holder and sundries. And finally, who could go without their smart phone. Do you bring anything different?
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2 Replies
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Hello!!
I go for my infusion every 6 weeks now. I was diagnosed 11 years ago at University of Wisconsin/Madison hospital. I was blessed to be seen by a doctor who had studied under Dr. Lambert at the Mayo Clinic. He had a very good idea from the beginning that I had LEMS. So it was only 6 months before I started treatment after no cancer was found. I had a bad reaction to Imuran and Methotrexate, so I started on the IVIG right away. I also take Mestinon. I began with infusions every 4 weeks, but have been able to stretch it out now to 6 weeks. I always take a book to read to help pass the time.
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Wow! To have worked with Dr. Lambert! Those are some credentials. I’m glad to hear you have been able to stretch out to 6 weeks! I just had a crash two days before my next 4 week infusion, so I guess that won’t be happening here. I started with Mestinon first but we quickly added IVIG. Firdapse was not FDA approved at the time. Immunoglobulin has great effect so I’m glad we got there early.
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