Round 13 Day 3!

So, today didn’t go well! For some reason, I started having bad side effects again. First it started with the lower back pain after I got up to go to the bathroom. As soon as I came back to bed, the pain was intense. Then, the pain started going up my spine, and eventually to my neck. It hurt so bad! I heard it’s called aseptic meningitis, but who knows. My nurse had me lay flat, and I think I fell asleep for awhile.

After I woke up, she talked to me about a few things we could do to help eleviate any side effects for tomorrow. She mentioned calling the doctor and getting an order to run an IV bag of saline at the same time as the IVIG, which she said has helped her other patients. She also mentioned running the infusion rate only up to 50 instead of 60.  I’m actually supposed to be running my rate up to 80, but at that rate, I get horrible side effects, which we learned at the beginning of my IVIG treatments last year. 

So, my nurse called my doctor, but they were closed for lunch. She left a message for them to give her a call back, but that call didn’t come before we were done with my infusion. I hope they called her back today, and that she’ll have an answer for me tomorrow. 

Since my infusion has been done for the day, I’ve been laying on the couch just trying to rest, and watch tv. I really can’t get  into any tv show, as my pain is intense right now. I’ve been alternating between Tylenol and ibuprofen, but nothing is helping right now. I think I’ll try some mmj when it’s time for bed. It’ll usually help with the pain, and help me sleep.

I also found out yesterday that my current authorization for my IVIG ends before my next round of treatments next month. I immediately called my case manager, who in turn called my doctor, who in turn called me to let me know they were on it, and would try to get a new authorization before August. Well, today I get a call from the guy who handles the authorization at Option care, the place who deals with my IVIG and my nurses, and he told me they had the authorization, and it was good until February of 2018. I couldn’t believe they got it approved so fast! It’s all because I have a case manager now through my health insurance, United Healthcare who really advocates for me. I recommend everyone get a case manager if you’ve ever had to fight your insurance companies and doctors for treatments.

So, that’s it! I’m just laying in bed now, waiting for 10pm to get here, so I can take the dog out and go to bed. I’m so tired, and in extreme pain! 



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