IVIG: Success or Failure?
I’d been living with myasthenia gravis (MG) for about 3 months. The speech problem was now intermittent, but I still had minor issues with swallowing.
My breathing problem had improved and I wasn’t as scared as before. My muscle weakness had improved some. Every so often the nerves in my forehead would set off a lightning storm. By that, I mean they would fire so much it felt like an electric current flowing through my forehead.
My husband told me the twitching was so pronounced he could see it. It would come on fast, then just as quickly, fade. I felt like things were leveling out a little, except I still had no improvement with my eye.
Starting my infusions
The insertion of a peripherally inserted central catheter (PICC) took place and now I could prepare for the massive bags of medicated IV fluid for the intravenous immunoglobulin (IVIG).
The home health nurse came to my home to administer the fluids, but first, we had to get the paperwork out of the way!
Once we started the infusion, I was able to work while she monitored the IV and me. With such a large volume of fluids running in a short amount of time, I had a few quick trips to the restroom. Still, I was a little anxious to see if this drug will help me get that right eye to finally open.
My independence was threatened
The IVIG took a few hours every day for 5 days. About the fourth day, the home health nurse told me the PICC line wouldn’t be coming out after all as I had expected. I broke down and cried like a baby. I know I shouldn’t have been so emotional about it, but I was.
I have trouble accepting the changes in my body and it's impacting my ability to be the tough, independent woman I believed myself to be. I was a strong farmer’s daughter. I worked on the farm growing up and did many chores most other people wouldn’t even dream of.
Though it had been years since I worked like that on the farm, I carried that hardworking tradition with me into my nursing career. Now that independence was threatened even more. I wouldn’t be able to swim, pick up my grandchildren with that arm, my dog wasn’t even supposed to be on my lap.
Therefore, we called the neurologist later that day after the nurse had gone. Thankfully, he said the nurse was mistaken. Once the medication was infused, the PICC could be pulled. Yay! Now to see if it really works.
The treatment didn't work
I’ve had trouble with edema for a few years now, but this infusion really bloated me with fluid. It took a few weeks to get rid of the excessive swelling in my extremities, but it finally subsided.
During this time, I was waiting and waiting for my eye to open and focus without double vision. It never happened. The IVIG didn’t work for me. Talk about disappointment and frustration.
Again, I cried. I was having so much trouble working, watching TV, interacting with family, and I hadn’t driven since this nightmare started. I guess it's back to the neurologist to come up with another possible solution.
Have you made any MG-friendly adaptations to your home?