Infusion
Shelbie had her infusion on Wednesday. Our doctor was trying to come up with some different plans to help eliminate some of the side effects she has been having the last few infusions. Well, none of his plans panned out. It's hard to know if the hospital pharmacy just didn't want to go to the trouble of ordering a new blood product in or there really was a genuine reason.
Anyways, the final decision was to slow the infusion down even more than we have done it. The average person can handle the transfusion being done over 4 hours. Shelbie has been doing it over 6 and on Wednesday, they slowed it way down so it took 8 hours. The company claims that side effects are dependent on the rate of infusion. 8 hours, though painfully slow, seems to have helped a lot this time. So far, she is just experiencing pressure, not so much debilitating pain. Today, when she would normally be laying on the couch with her head wrapped in ice, she was out getting things done and able to manage with advil for pain management. It's hard to say if it was the rate of infusion or the immunity in the plasma. Some people have said if you don't get the side effects then it really isn't working. Who knows.
She probably overdid it a bit today. Tonight the headache is getting worse but still hoping that it doesn't get unmanageable. If you ask me, I think that her dysautonomia creates a lot of the problems. Her autonomic nervous system just has a hard time regulating itself to new things, like the IVIG. We have also found that just getting an IV makes her break out into hives and that has been a problem. They are spreading up her arms and really itchy. No vasculitis at this point so all in all, it's been a pretty good transfusion this time.
Shelbie really needed a break and I am so glad it finally came. I just hope things continue to get better rather than worse.
Anyways, the final decision was to slow the infusion down even more than we have done it. The average person can handle the transfusion being done over 4 hours. Shelbie has been doing it over 6 and on Wednesday, they slowed it way down so it took 8 hours. The company claims that side effects are dependent on the rate of infusion. 8 hours, though painfully slow, seems to have helped a lot this time. So far, she is just experiencing pressure, not so much debilitating pain. Today, when she would normally be laying on the couch with her head wrapped in ice, she was out getting things done and able to manage with advil for pain management. It's hard to say if it was the rate of infusion or the immunity in the plasma. Some people have said if you don't get the side effects then it really isn't working. Who knows.
She probably overdid it a bit today. Tonight the headache is getting worse but still hoping that it doesn't get unmanageable. If you ask me, I think that her dysautonomia creates a lot of the problems. Her autonomic nervous system just has a hard time regulating itself to new things, like the IVIG. We have also found that just getting an IV makes her break out into hives and that has been a problem. They are spreading up her arms and really itchy. No vasculitis at this point so all in all, it's been a pretty good transfusion this time.
Shelbie really needed a break and I am so glad it finally came. I just hope things continue to get better rather than worse.
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