HAE needed frozen plasma *anyone else with this disorder?

I have a blood disorder it a C-1 deficiency and its called Hereditary Angioedema (HAE). Basically I get hives but it gets bad when my intestines swell it causes severe pain and I live on morphine for several hours. Well Friday morning when I got to the ER they could not start an IV due to my swollen skin and hives. So they called my DR and OB and they made the decision I needed a central port so in 2hrs I was hustled over to surgery and a Dr came in and rigged an IV just for surgery. So now I have this sexy tube hanging out of my chest. I am now on my 9th bag of frozen plasma but still have 3 more to go. The plus sign I don't have to have anymore IV's. This central port will stay in place like a year. I need to find others with HAE. I know there are some people its just finding one that is also pregnant that has been hard. I hope everyone else is doing better.