CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I had a PICC for 9 months and while I had no problems, it sort of sucked to have the thing so bulky and accessed all the time. I am being offered to choice of PICC or chest or arm port, and am liking the idea of the port better.
My goals are 1) involving as few people as possible that I have to pay to care for it and 2) being able to access and de-access myself and 3) being able to lake and pool swim this summer.
Could people please weigh in?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
I have had a port for over 15 months. I have a Bard Slim power port so I can shower and sauna when my huber needle is out. I infuse twice a day 4 days a week.
Generally there are less problems with a port. When it is accessed, I use a hand shower and cover the port with press n seal in case I splash water on that area.
You can swim when the needle is out. You may be infusing 4-5 days a week so you do have some time for activities.
Your doctor will have to give the nursing staff permission to teach you how to access the port yourself.
I had to learn to do it for a vacation so now I do it myself and also for my husband who is also being treated and has a port.
Even accessed, I don't feel any restrictions for physical activity at all. You don't feel the needle at all once it is in and I use ice just before accessing so I don't feel the needle going in at all.
My port is in the chest on the right side. I would think that a port on the arm might be hard for you to access. The chest port is easy.
If you decide on the port, ask the interventional radiologist to mark where you bra strap is so that the port is not going to be bothered by your straps.
It may sound silly to do that but in the summer, I wear racer back bra's that are cut in more and I just didn't want my straps to rub the area that was accessed.
The doctor was happy to do that.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
I have had mine for over 2.5 years now, and let me tell you why I love it...
1) When I have to get off treatment due to abnormal labwork, it isn't as big of a deal because I just deaccess and try again at a later date. No need to get a line pulled and get a new one.
2)I can deaccess and feel like a normal person! No wires or tubing. I can shower normally without it and move around.
3)I've had no issues with infection or embolisms.
4)I can access it myself anytime I need fluids, etc.
5)You have one surgery then it's smooth sailing. You don't have painful dressing changes.
The only thing is that I wish I would have gotten a power port...If I go to the ER, I normally end up with two IV's because I can't get contrast through my port.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Wow, sounds like port is the way to go.
What about the dressing changes, isn't that a big deal?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Port - everyone has said it above.
The home health nurse came once a week and changed the needle.
At one point I was infusing M-F and I could take the needle out on Friday and have the weekend off. The nurse would come Monday and put the needle back in.
The only problem I had was home health nurses who didn't really know how to deal with putting in a needle for the port. Once I realized they didn't know what to do, I would say goodbye and call the nursing place and ask for another nurse.
I was a little sore the day after they placed the port, but nothing huge.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Oh jeez. In that instance a family member, or yourself, could probably be trained to do it, right?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
It isn't hard to do at all. You just have to remember the sterile steps. Easy as pie. I access myself and my husband every week.
We buy supplies in bulk to save money so we have a huge bookcase full of all our infusion stuff.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Faithfull, where do you buy your supplies?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Well I was just told by the infusion company that they will not train people to remove or reinsert the needles for a port.
Spoke to a pharmacist who said it is too risky. You could nick part of what's under the skin and it could float through your body (my very bad way of paraphrasing what he said).
I was so happy to learn about a port vs. picc and for sure the port sounded like a better option.
But if the needle has to be in 24/7 you have to treat it the way you treat the picc--no water can get to it, so there goes my thoughts of being in the ocean with a port.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
quote:Originally posted by beaches: Well I was just told by the infusion company that they will not train people to remove or reinsert the needles for a port.
Spoke to a pharmacist who said it is too risky. You could nick part of what's under the skin and it could float through your body (my very bad way of paraphrasing what he said).
I was so happy to learn about a port vs. picc and for sure the port sounded like a better option.
But if the needle has to be in 24/7 you have to treat it the way you treat the picc--no water can get to it, so there goes my thoughts of being in the ocean with a port.
You won't nick anything. They are trying to scare you!!
Use Infuserve for your meds and get another nursing service. They have to teach you to do it if your doctor tells them to. Is your doctor on board with that?
Tell them you have to learn how to do it because you are taking a vacation. That is what I did.
Just watch the nurse do it a couple of times and you will be able to do it. You can't nick anything and hurt yourself. The only thing you might do is miss the port and there are hard bumps around the outside of it so that is not likely.
The needle is in 24/7 for the days you infuse and then out. If you infuse 5 days a week, then it will be out for two days. I infuse twice a day for 4 days so I get to have the needle out for 3 days.
Shower with the port covered with press n seal and use a hand shower to make sure you are careful around it. Once you have the surgery to implant the port, you will have to stay away from the ocean for two weeks until the sutures heal.
Well worth it to be free the other few days to shower and swim in the ocean.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic