For those of you who have or have had ports for Lyme, did you leave it accessed (with the needle in) for a week or so, since you were infusing daily or nearly daily? Did you access it (have the needle put in) daily? Or any health professionals here with input?
I was about to get a port, and my doctor finally gave me the go ahead for it, after much reluctance on his part. I was intending to have it accessed weekly, as is most normal for Lyme tx. But today my docor said I could only have it put in, if it were to be accessed DAILY by a nurse!!
I've "spoken" with LOTS of Lymies who have or who have had ports, and none of them were having it accessed daily (except one for a while, because they didn't have the right kind of needle).
It sounds excessive and impractical. It would be hard on my body, expensive if I needed a nurse daily (I'm sure I could do it myself once I learned), and not good for the life of the port to be stuck so many times. FEEDBACK, please. Thank you!
BTW, I want a port, because I had on-going pain with the PICC that I had for the whole 6 months I had it. My veins are not in very good shape, it seems. When I had peripheral lines, I had 5 out of 6 veins collapse--very painful!
[ 03-12-2010, 12:50 PM: Message edited by: Rumigirl ]
Posted by springshowers (Member # 19863) on :
Your so right and I have also never heard of anyone getting accessed every day. I do not see why your doc would say or even recommend that.
From what I know and my own experience I would say accessing daily would be more risky and damaging to your skin and the port and just be not even recommended by anyone??
I would ask him again to clarify this and to make sure you understood and ask why he would say this.
I had a port for a good 5 months and we accessed it weekly pretty much on the dot because that is the medical recommendation.
If there were time periods such as pulsing meds etc and time off like 3 days to a week then we would de access it and wait a few days without the needle to give it and me a break too..
Anyone I ever talked to who has or has a port said the same... but maybe others will have a different view or idea about your post.?
Posted by Haley (Member # 22008) on :
When I told my doctor that I could get home healthcare and that I would do the infusions myself, he freaked out. He thought it was way to risky. He wanted me to come into his IV room every day.
I eventually talked him into it. The Home health nurse came once a week to put in a new needle and I did the infusions. If the infusions were 5 days a week, I would take out the needle myself or have my boyfriend take it out.
I did go through a period where I was poked every day. It was not fun.
Posted by Rumigirl (Member # 15091) on :
Thank you. I've never heard of having to have it accessed DAILY!! It makes no sense at all to me. But my doctor, who I think really doesn't know about ports, won't listen to me about it. I'm very frustrated.
It took me 4 months to get him to come around to letting me go back on IV and to get a port. ANd now I'm back to square one with no tx that I can tolerate, and in really bad shape.
Posted by Rumigirl (Member # 15091) on :
I just spoke with the infusion nurse that I had when I had my PICC, who was going to be my nurse this time around. He's extremely experienced with IV care and ports.
He said you NEVER access ports daily. That it's dangerous. He has patients 2 years old even, and you would never do that. So . . I need to get my dr's office to call him. And now the surgeon will be on vacation for 1 1/2 weeks.