I just recently(10 days ago), had a venous port put into my chest. This will definitely improve the craziness of getting a central line started in the hospital. And my husband and i are still trying to get into NIH, for research and to help increase our chances of insurance covering maintenance use of IVIG. My last episode was Mardi Gras week. Surprisingly, with my husband urging that the IVIG be administered very slowly, I did not have the usual violatile reaction of vomiting and severe pain. I still had pain but more on a scale of a 7, vs a 10. My question is for anyone who might have had a port surgically put in, did it take a while for your body to get adjusted to this foreign object? It's not infected. I just feel like i haven't got my snap back. Kind of achey, flu-like symptoms. I'm pretty sensitve to everything, and there really is nothing on google that supports this.

Nolan has had a port for years. It is an easy way to give his IVIG every month. It never bothers him. If his IVIG is given slowly, he has very few symptoms, maybe just a mild headache. I give it to him at home at night over 8 hours. Wendy

My husband had a port surgically implanted about 4 months ago. He had no flu-like symptoms, just some itchiness and soreness at the site. His IVIG reactions are similar to yours. When he used to receive it in the ER during episodes, even morphine wouldn't give him relief from the pain-splitting headache. Now that he receives IVIG monthly in a day medicine unit, the headaches have lessened quite a bit. He's going to try another brand of IVIG to see if he can reduce his side effects to 0, as he is still sick for a week after a transfusion. I wish you the best of luck in convincing your insurer to cover monthly IVIG for you.

Hello again Maire. I can't believe I forgot about this, but my husband did have a major capillary leak episode shortly after having his port implanted. We wrote it off as coincidence at the time, but it is possible the surgery acted as a trigger and set off an episode (no way to prove it though...our time in hospital last December was crazy). I hope you are feeling better, but if you still feel off don't hesitate to get a hemoglobin test. Better safe than sorry.

Hi I went camping two hours after I left the hospital, after the port was installed. No problems with the port. I have had it in for a little over a year now. It pinches and itches once in a while but it is not to bad.