I still don’t feel confident enough to go to four 30g/300ml infusions per month so for now I am doing one per month. I am on year one or two of a four year course of human plasma.
Every Wednesday in the middle of each month my nurse comes over to my house to infuse me. So I get to sit in the comfort of my home and do the infusion since I get too car sick to go to an infusion center. The IVIG makes me very drowsy and sleepy during the infusion. I’m usually nodding off and not sure what my nurse is saying most of the time.
This infusion went well and took about 4-5 hour for a 30g/300ml bottle of gmmgard (brand of human plasma) and a 250ml saline bag. I took all my pre-meds and hydrated as much as I could at 8am since I’m not a morning person and that is during my bedtime. It would be like some who goes to bed at 9pm being woke up at midnight to get a 5 hour infusion then try to stay awake all night until 9pm the following day.
My veins weren’t being cooperative but better than other times. It took the nurse four needle pokes in four different areas/veins to get a good one. I can no longer use my left arm due to RSD (RSD is one of the most severe pains in the world). So we only have my right arm to work with. He tried a vein in the middle of my arm but the vein lead to nowhere like it was only a tributary so I felt the flush of cold saline only go up a few inches then stop and swell up as if the vein was blocked.
The next was in my hand where that vein collapsed. The next was on my forearm and that vein rolled or vasospasmed. We had succees the fourth vein but it was on my elbow crease so I couldn’t move my arm even one inch or it would set of the pump alarm so I had to sit very still. The alarm controls the amount of fluid into the vein so it’s not to fast of an infusion. But if you bend your arm you bend the IV tubing which can close of the flow.
So far my brain is hurting and slightly inflamed but not too bad and no aseptic meningitis so far (knock on wood). Aseptic meningitis can be deadly and is not very fun, I’ve had it a few times and literally thought I would die. You can’t move, think, talk, breathe….etc. I’ve had fever and chills but I have that daily so I’m used to those symptoms and side effects. Other than that not too bad so far.
I hope all my readers are finding success with treatment, have someone to support you and I hope you are finding beauty in life itself although everything hurts. Stay strong warriors!