Portacath

[bwillia]

My daughter has been receiving Cinryze for the past 3 years. She drives about 20 miles to the doctor twice a week for infusions before school. She will be going off to college next year and rather than trying to find a doctor we are thinking a PORT might be the best solution. Also, after 3 years, it is getting harder and harder to find veins. I'm wondering how many HAE patients out there are currently using a port or thinking about. All the research I find on line is for cancer patients. It seems that a port would be so freeing. We are planning a family vacation in a few weeks and will need to make sure we locate a doctor before we go. A port would have made this much easier, but it is a big decision. I want to help my daughter make the best choice for her. Any thoughts, suggestions, comments would be greatly appreciated.

[Lior]

Hi,
Can't she learn how to inject it to herself? Drug users do it...
I used Berinert, and a nurse that I know from my daughter kindergarten injected it to me. It shouldn't be so hard procedure, and you may help her.
I have Fyrazir for attacks, I still didn't use it (I don't have attacks so often), but it should be injected to the belly, and it is easier to inject it by yourself. My physician says that they intend to teach us how to use it by ourselves.

Try to consult your doctor about it. There are many solutions for people that suffer from diabetes, there is no reason that you would have to go to a doctor for every injection.

[Royce]

:)Hi, I am in the process of getting a portacath for my cinryze infusions.  I get them twice a week like you shared.  My doctor was more than ready to proceed as he saw it as a benefit to me and the medical staff.  It also will make home infusion easier to get approved by our insurance company  down the road.  Blessings,
Royce

[soreilly]

Hi Bwilla,
Several HAEA members have ports and rave about them...I am sure they will contact you directly to discuss in detail.  I don't have one but if my episodes become more frequent I'd consider it!  Good Luck to your daughter.

[Bigskygirl]

Hi Bwilla, 
I have had a port now for over a year and would HIGHLY recommend.  I have smaller veins so things were always difficult prior anyway,. and the port made everything faster and easier.  It also makes blood draws much faster and easier depending on how frequently your daughter may have to have testing done.  Best of luck. 

[Tayla]

Bwilla,
  I am currently a senior at the University of New Hampshire.  I do self infusions every 4 days.  I was taught by a nurse and do pretty much everything on my own. One of my roommates tapes down the needles for me and that is it.  I ran intro trouble with hitting my veins and got a port put in.  However, my port got extremely infected and I had to have immediate surgery to have it removed (It is very rare to get an infected port!) 

I would recommend that if you daughter wants to get a port that she have it put in soon or over the summer when she is able to have a nurse come help her the first few times and down the road teach her.  She can easily be taught how to use it with a little time.  When you are running around in between classes, have a lot of work and live in a dorm it can be hard to schedule times with a nurse and is much more convenient to just be able to do it yourself.  Atleast this is what I found happened with me.  Please if you have any more questions I would love to help!
-Tayla

[reginab]

I have been very successful and am quite happy with my port.  I was actually a phlebotomist, and I can give myself the injection but I take it twice a week, how hard does this all have to be.  The port is incredibly liberating.