Please help me decide– Port? Picc? for IVIg
AnonymousFebruary 28, 2007 at 5:35 pm
I want to try an alternative, semi-permanent line for getting my IVIg– I get 55 grams three times per month, and my veins are not easy to access. I’d like to do this before I’ve got no good places left!
My neurologist has written the orders, but the best person in my area to insert them does not consult– so I must do my own research and decide (if I chose something that wouldn’t work in my body, he’d speak up– he just doesn’t explain all the choices and advantages/disadvantages.)
If anyone has preceded me down this path, can you please share how you decided– what factors did you consider?– and what type you decided on? I [I]think [/I]I’d prefer a port because it’s not exposed, but it’s not a clear cut or easy decision.
(I have only found this thread, “What is your opinion on ports? Good or bad” http://www.gbs-cidp.org/forums/showthread.php?t=1709)
AnonymousFebruary 28, 2007 at 7:03 pm
I had a lot of medical problems when I was diagnosed with CIDP,so my veins were not good either.I had a Picc line which I kept for 6 months and HATED! I ended up with a constant low grade temperature which went away when they pulled the Picc.They had to come out and do dressing changes every week,and it was just always in the way.I now have a port in my chest and have had no problems with it at all.I know mine will be long term so there’s no worry about having it removed.Take good care.
AnonymousFebruary 28, 2007 at 7:36 pm
A port is harder to get infected. They last a really long time if used properly. I think most are good for about 360 accessess or 3-5 years.
I think they are a Godsend. It has made my daughter’s life SO much better. She had a Broviac catheder first & that got an infection. It was so hard to take care of. Anytime you have something hanging out of your body you have to be concerned about infection & take special precautions. Life was extremely limited during the 4 months that she had it.
There are only 6 veins that dr’s like to put a port in. 2 on either side of your neck & 1 above each elbow. There are some in the groin area too but they really don’t like to put anything there for risk of infection.
With a PICC line you will have to be concerned about what kinds of shirts you wear, getting it wet (no baths or swimming), and someone tugging on it. There is also a higher risk of infection with it.
I HIGHLY recommend a port for anyone that is debating this issue. While you are not getting treatments your life can go on like nothing is wrong. You are not limited in activities & it’s like it’s not even there.
If it does get infected then it is harder to remove. They can get clogged but there are ways to clean it out. Rarely someone will get a defective port.
My major concern is to make sure that we have a nurse that knows what they are doing. They MUST use proper sterile technique while accessing it. They MUST clean the cap WELL with alcohol pads before inserting anything into it.
My advice, go for the port. You’ll be sore for a few days afterwards & you’ll have a scar on your neck and on your chest just above the port but honestly they aren’t that bad. The one on my daughter’s neck has completely faded and she got hers August 31, 2006.
I hope that helps.
AnonymousFebruary 28, 2007 at 8:54 pm
My mother was in the hospital for a week recently. Due to the poor quality of her veins, the doctors wanted to do a PIC line. Me and my brothers were very leary of this because we had read that they are often the source of infection.
Unfortunately, she ended up having one inserted, and sure enough, the 2nd day after leaving the hospital, the PIC site got an infection. Fortunately, we were watching for it, and caught it very early, so she’s ok now.
If you have a less invasive alternative, I would go with that instead of the PIC. Just my opinion, but there have been several newspaper articles here lately about the high numbers of serious infections picked up in hospitals by patients. Whatever you decide, don’t be shy about telling anyone handling the pick site to be sure to wash hands and follow the medical guidelines for keeping the PIC line clean.
AnonymousFebruary 28, 2007 at 9:26 pm
Kelly is so right about the nurses keeping a sterile environment when accessing the port.Mine have been really good,and were with the Picc line too,but I still got an infection from it.I’d had it for 6 months,and just think there’s a lot more chance of infection with an external line.My neck scar isn’t visable now either. The vein in my neck does get a little irratated and sore after infusion,but it’s nothing major.
AnonymousMarch 1, 2007 at 6:24 am
I had a pic line for about a year, which was honestly too long for that of what I understand. The nurses did a great job keeping it clean; however.
What the others say about keeping it dry, clean, etc. is correct. I hated the thing as I either had to wrap it for showers, or stick my arm straight up in the air while showering. I sooooo enjoyed my first shower after I had it removed!
I would definitely go with the port next time. Just make sure you keep it clean and infection free. Of what I understand, it’s pretty much a direct feed to your heart; therefore, you don’t want infections at all.
Best of luck!
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