So, I still feel like I’m dying.
The company that is supposed to get my nursing set up called me today and was surprised I wasn’t in the hospital while this was getting set up. (Then again, my GP DID try to get me admitted but our ER is worse than awful which is why we are even trying to turn the house into a hospital now. Anyway..) Once she realized I was supposed to have been receiving these Infusions daily since Monday (I got them daily in various places last week but was supposed to be getting them at home since Monday) she said:
“Oh my! We need to get on this! Your last dose was Sunday? I’ll figure things out and call you back.”
She didn’t call me back but I had not thought to hear back from her before tomorrow really. At 4PM or so I got a knock on the door with a few very heavy parcels. I assumed they were just saline bags and tubing and a pole and some flushes but as I opened them I realized – goodness! They sent me absolutely everything: medicine, caps, syringes, gloves, accessing kits, alcohol swabs… Everything but the nurse! I was so overwhelmed I started to cry. My doctor made it seem in person like a nurse would show up each day like for my previous surgeries. I now think a nurse will show up once to teach me to access myself and then I am on my own. How scary is that?
My port is a central line that goes right to my heart. It’s a bit intimidating thinking about accessing my port by myself. I know I am never alone and I have Master Pravus but this is so scary to me. It’s a new skill and once I have it I know I will feel so much braver but right now I don’t feel so brave.
As I was typing this I got a phone call from my nurse (L) who is supposed to show up tomorrow. I’m nervous that Master Pravus won’t be home with me while I’m learning but I know I can do this.
I’m so grateful for my new GP for doing everything she can for me right now, even if it is scary.