HAE and Permanent IV Access

10 Jan

What follows is an email I composed for the Hereditary Angio Edema (HAE) Digest in response to requests for information, posted here for those who may not be on the Digest’s mailing list (to join the mailing list, which is open to HAE patients and their families, click here).


I live in the Orlando area and have had my portacath/mediport for 2 years now. I live alone and a home care nurse trained me to access the port myself. I was a tad nervous at first, but soon I could do it in about 5 minutes. I received my first shipment of Cinryze two days before Christmas 2008 and self-infuse three times a week. I leave my port accessed from Monday through Friday and go needle-free for the weekend. I place a clear OpSite IV patch over my port and needle during the week to keep the site sterile and have not had any problems with showering or bathing. I also place a biopatch (an antimicrobial dressing with chlorhexidrine gluconate) between the needle housing and my skin to further decrease my chances of infecting my port. I only needle-up once a week to prolong the life of my port.

When my port was implanted during outpatient surgery at the Florida Radiology Lab, I was completely awake and watched the insertion on radial TV; it took about 2 hours and someone had to drive me home (technically). My port is slightly visible because I don’t have much muscle or fat below my collarbone, where the port is placed; all that is visible is a small bump and I’m able to use a very short needle (1/2″). I can feel with finger pressure the internal catheter line that travels up to my jugular vein, where the catheter then bends down towards the heart. I use a Huber needle to access the port; my Huber needle has a short length of IV line attached and a plastic housing that slides over the needle after removal for needle safety (it must still be disposed of properly; my local fire station provides free needle containers, as does my Cinryze specialty pharmacy).

When I administer a Cinryze infusion, I flush my port with 10cc of saline to remove heparin from the line, then I administer 10cc of Cinryze over a ten minute period so the proteins are evenly distributed throughout the bloodstream. I then administer another 10cc of saline to flush the Cinryze remaining in the line into the bloodstream, and then flush 5cc of heparin into the line to remove the saline and keep blood from entering the catheter line and forming clots. Note: If the port is not accessed within a 30 day period, the line must be flushed with saline and filled with new heparin.

My port has given me back my independence and I highly recommend it. I created a “cheat sheet” for myself of the sterile steps involved in accessing my port and will happily share it with anyone interested; just leave me a comment.

No-swell blessings to all,


DISCLAIMER: The above comments are based on the personal experiences and opinions of the writer, and any errors are unintentional oversights (or possibly just plain ignorance). Readers should always consult their own physician for current and official medical facts, advice and opinions. ALWAYS take everything anyone (including me) tells you with (preferably) two grains of salt (especially if aspirin upsets your stomach as this could result in an abdominal attack [grin!]) and please don’t call me in the morning if you don’t like what I say. Bright blessings for a happy and swell-free day.

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