Reply To: To Port…Or Not to Port?

May 26, 2018 at 7:45 am

Hi everyone,

I had a port at age 8 for PE as well. I remember getting it and getting it removed pretty well. It was an interesting experience for sure. I hope that my life goes back to normal soon, like you said. Though, I have not ever been “normal”! Haha!

I cannot receive subcutaneous or home IVIG because I have autonomic dysfunction, caused by CIDP, which causes my heart rate and blood pressure to jump around. Most importantly, last time I tried to get IVIG at home, my BP dropped suddenly and the home infusion nurse was not equipped to deal with it. I will not be getting infusions at a hospital, but rather a small infusion center at a doctor’s office. They are a little more well-versed in this type of thing and can monitor me better, have the equipment, etc. While home is comfortable, I need professional monitoring to make sure I am okay.

A PICC line, though, is something I will have to inquire about. I have a few questions. I have been reading that you cannot bathe/shower with them or swim, etc. What do you do with that? Also, I read that you cannot bend with them in some fashion. How do you manage?

I hope you don’t mind answering my questions. Thanks so much for your and everyone else’s support.