Getting Port next week: words of wisdom

phutton

New member
I am getting port next week. I am very active. I workout daily and own a gym and yoga studio. I am nervous about placement. For those of you who are active where did you get your port? How noticeable is it in your chest? How long before you worked out? Did you request certain port or needles? Can you tell I am nervous by the million questions(VEST)
 

Melissa75

Administrator
I'm sure you'll get some replies from people with experience and specific answers to your questions, but in the meantime here are a few threads from the past that dig deep into placement, needles and more.

http://forum.cysticfibrosis.com/threads/1766-Port-Placement-Options
http://forum.cysticfibrosis.com/threads/14355-getting-a-port
http://forum.cysticfibrosis.com/threads/16682-IV-Port-on-Arm-vs-Chest
http://forum.cysticfibrosis.com/threads/16473-Took-the-first-Step-scheduling-port-surgery!

I think it's very cool that you own a gym and yoga studio!
 

jshet

New member
Hi. My son had his port placed last April, so it has been a year, and he loves it. His is placed high on his right chest. His sticks out a good bit because he is super thin. I think the more meat you have, the less noticable it is. I believe it was a week before he could really lift or carry anything heavy. He can now do whatever he wants when not accessed. The size of the needle was decided the first time he was accessed. His port is a power port, and i was given a card with all of the info. about his port, surgeons name, ect to carry with me. I just put it in an envelope and wrote his needle size on it so i wouldn't forget.
my son also has a g tube, and between it and the port when wearing a tee shirt really isn't noticable unless the shirt is more clingy, then it is noticable at times.
I think once you get past the surgery, you will become more comfortable with it, and forget it is even there most of the time.
good luck with your surgery and if there is snything else i can help answer for you please ask. Take care, Janelle
 

jaimers

Super Moderator
Melissa provided some great threads for you to look into! I have had a port for about 7 years and I love it. I have a power port (see link below for picture of it). they do make lower profile ports so maybe talk to your doctor about the options for it size wise. It's on my right upper chest about 2-3 inches below my collar bone. It does show a little bit but I'm at a healthy weight and I have a larger chest so it's not noticeable unless I'm wearing a tank top or lower cut neckline or a bathing suit. There is a 1 inch scar right over it so that might make it a little more noticeable. On me you can see where the catheter is tunneled up over my collar bone and attached into the vein in my neck but unless you knew what you were looking at it looks like a muscle or something normal on the side of my neck. I know what it is so I see it but the average person would have no idea. I seem to recall it being sore for about a week and then it was fine. I wasn't consistently working out at the time so I don't have an answer for you on how long it would take to get back to that.
I'm relatively active and work out about 3 times a week doing crossfit. I haven't had any issues with the port getting in the way. It is sewn onto the chest wall so when I'm stretching sometimes I can feel it pulling but it's not painful or anything. The only time I really take caution with it is when it's accessed. The needle does make it stick out more than normal so I'm more likely to catch it with a barbell or my hand or something. When it's accessed I just modify what movements I do in the gym and it's fine. I do tend to sweat the dressing/covering off when working out so I just have to change that more.

http://www.bardaccess.com/port-powerport.php?section=Overview
 

shay

New member
My daughter is 18 and her port is placed on her side under her arm. Her pediatric hospital does this for the girls so that they don't show on the chest which is really nice. You can absolutely see it in things like string bikini top and the like, but it is not on her chest. The disadvantage to this placement is that I don't think she could access it herself. I do that for her now. She really likes the placement. Her surgeon allowed her to pick the spot and he said he would try his best to place it where she wanted, no promises of course.
 
I don't have any advice other than saying the years I've been on this forum all I've heard is how people were so glad they got it done and how they wish they'd done it earlier. :) HUGS and good luck! Do follow the threads above, I remember a discussion of the size of needles and how one was easier than the other, but the details have slipped my mind. Talk to your CF team, they are very experienced and have good info to offer. Make sure if you use the vest as an air clearance therapy that you ask for extra foam or padding and talk to the team about how the placement will affect your vest treatments.
 
I got my port a few years ago, and I love it. It took many months before I stopped noticing it in my upper left chest. It has been INCREDIBLY useful, in that I access it myself once a week to rehydrate, and I think it's kept me out of the hospital many times. I exercise and do yoga, and the only times I've been really careful are doing Cobra pose when I'm accessed. Otherwise, it's just a little tighter there than it used to be. I'm always happy to talk if you'd like!
 

azdesertrat

New member
I got my port in Nov. of 2014. I sure am happy with it.
My veins were shot; it was near impossible to place an IV or to access a vein for blood work. With the port there is no more digging around to set an IV, no more multiple sticks looking for a vein for blood
work.
The only drawback I can see is that it takes a little longer to get my blood draw due to the fact I have to have an RN access my port. Sometimes it's hard to get an RN away from their regular duties to come over to the lab to draw blood.
I have been told by doctors and nurses that only an RN is qualified to draw blood from a port. It kind of blew me away to read some people are accessing their port by themselves; but then everybody's situation is different, right?
As far as activities go, I haven't had to do much of anything different. I still go target shooting, I just don't fire rifles or shotguns with a bad kick to them. I still ride my ATV out in the boonies.
No, it hasn't changed my activity schedule much at all.
Good luck, I hope you get yours set where you need it & your quality of life stays the same or better yet, improves!
 

nmw0615

New member
I got a port November of 2013. It's actually a double port, so I have two access points instead of one. My only complaint is that, as a female, coving up an accessed port is more difficult that covering up a picc dressing. And really, that's a problem that's pretty low on the serious rating, haha.

When I'm accessed, I can't swim (my preferred exercise), but I do pretty much everything else. I also do yoga, and I noticed some positions felt uncomfortable, accessed or not, and so I've tended to shy away from those or alter them just slightly.

Mine is placed on my upper left chest. When I'm at my normal, healthy weight, it sticks out a little, but not too much. The scar stands out more than the port, really. I didn't do much for about a week, maybe a week and half after getting the port. The pain went away fairly quickly, but I felt an uncomfortable sensation for a few days.

I request certain needles so the profile stays low. We tried needles that came with a "buffer," but those stuck out too much for me, and they were difficult to cover. Now I use a lower profile needle.
 
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