Reply To: In home infusion

I was starting to get infusions at home and it was awesome. The nurse came to my house very early (as I am an early riser!) and brought her bag of supplies. The supplies for the infusion itself were sent to my house a few days prior via a courier, I’m not sure how they do it in your state. Everything was sent to me in boxes; IV pole, dressings, Epi-pen in case I had an allergic reaction, benadryl for pre-loading medication, etc. They even sent me the gauze to wrap my IV hand with so I could use it for multiple days, as that would have been my loading dose.

The medication was also sent to me via courier in a cooler a day prior. We don’t have the biggest fridge, and it takes up a lot of room! Five days worth of IVIG in those glass boxes/containers is a lot. (P.S. I still have one that I have to give back because I forgot to give a box when they picked it up!)

Anyway, the nurse came to my house, dressed in her scrubs, and actually brought a vein finder machine. She was very cordial, though I think it is essential that you find a good nurse somehow. I wish we could screen for our nurses because this nurse and I had NOTHING to talk about and she was at my house for a good 5 hours. She was very affluent and had a $500,000 house that she was selling and kept talking about it, etc. I am a poor Philly guy so we had nothing in common.

Overall, I feel like it was more comfortable. They sent a backpack for me so I could put the bag into it once it was transferred from the bottle. I carried it outside, upstairs, etc. We sat in all different places. I eventually ended up laying upstairs one day because I was so tired. But, we did get to sit outside for a while, too.

I did end up stopping IVIG because my blood pressure dropped so low both days.

I have Medicare and Medicaid in Pennsylvania, and as far as I know, they covered IVIG 100%. (If I get a bill, I will let you guys know! :P!)

My diagnoses are former Guillain Barre, age 8, and CIDP, current. I have both axonal and demylinating neuropathy.