It's been 2 weeks since my last failed infusion where I was only able to get half my dose, and was forced to basically throw away almost $10,000 worth of medication. I am dead tired less than 2 hours after I wake up in the morning. I had to take a nap on Christmas while I had family over because I was so tired. I had to take another nap again yesterday because I just couldn't function. It's like taking a sleeping pill,. then fighting to stay awake. I swear, if I hear "maybe it's in your head" or "you need to go to bed earlier" one more fucking time, I'm going to lose my shit.

It's been 4 weeks since I had my last regular dose, so really, it's been 4 weeks since I've have treatment. I've never had fatigue like I have now. My pharmacy was supposed to send a replacement dose and new pumps last week. It was my understanding I would get these either Tuesday or Wednesday. I never got them and I never got a notification of shipment. I'm sure for my regularly scheduled infusion today, and I only have the pumps with the faulty lot number on hand. Are they expecting me to risk my life and drug again by using these pumps? Who's going to pay for it when/if they fail again? I sure as fuck am not. Even though I ultimately pay with my health.

Am I being unrealistic here? Should I just bend over and use the pumps with the failed lot number because 2 from my supply with that lot number failed? I'm so sick of this shit.

We use cookies to give you the best online experience. By using our website you agree to our use of cookies in accordance with our cookie policy.