Port questions

[randomgirl]

My first question about ports is how long have you had them? I've had mine for 3.5 years. I want mine out so badly though. I've had a transplant over 2 years ago. I do use it every month for IV IG though. But the annoying part is that I cannot wear 95% of shirts because they all show my port. And the shirts that I can wear are t-shirts and just ugly shirts. I know I sound incredibly annoying but it's frustrating being a girl and not being able to wear what everyone else is wearing. I also have a manly body shape because of no curves whatsoever so that makes it even harder to find clothes. My port sticks out more than most people's because I'm pretty underweight. So my other question is has anyone got there port moved to a different location? Mine is under my clavicle but under my neck towards the center of my chest (not in the center though). My other question is where is everyone's port located? I read you can get them in the arm.

 

[jshet]

Hi randogirl. My son has had his port for a year, and we love it. His is placed through his jugular vein, and sits above his right chest(nipple). Like you he is very underweight,and you can see it sticking out through all his shirts. But he has developmental issues, and is a guy, so it does not bother him at all. I do have a daughter who is 21, and if i think of how she would feel in the same situation, i can understand why you feel the way you do. As helpful as your port is for you, you do not want to be reminded of it constantly, or be limited by what you feel comfortable wearing. Feeling good mentally and emotionally is very importatant to your physical health.
i have heard of some having it placed in their arm. I am assuming since you still need monthly iv's, you still definetly need the port and cannot have an iv placed each month, or have a picc line placed.
i am sure you will get great advice on here, but maybe bring it up to your cf doc or nurse. I am sure they will understand your feelings and be willing to discuss having your port placement moved to your arm if it is something that is a safe option for you. Good luck.

 

[Meg73]

I have had my port for almost 10 years now. It's right beneath my right collar bone, and it sticks out quite a bit. When I first got it, I got rid of any clothes that didn't cover it. It is bigger than I expected it to be, and the scar beneath it is quite fat. After a while though, I was able to accept it, and now I wear whatever I want. Very occasionally, people notice it and ask questions, but mostly I'm able to forget about it. However, I understand not wanting it out for everyone to see.

PICC lines got so hard to place, I'm usually grateful that my port makes my life easier, and it's worth having it. I haven't had an arm port, but if your chest one makes you uncomfortable, it might be a good fit for you. It's important for you to feel comfortable in your own body.

 

[triples15]

My first question about ports is how long have you had them? I've had mine for 3.5 years. I want mine out so badly though. I've had a transplant over 2 years ago. I do use it every month for IV IG though. But the annoying part is that I cannot wear 95% of shirts because they all show my port. And the shirts that I can wear are t-shirts and just ugly shirts. I know I sound incredibly annoying but it's frustrating being a girl and not being able to wear what everyone else is wearing. I also have a manly body shape because of no curves whatsoever so that makes it even harder to find clothes. My port sticks out more than most people's because I'm pretty underweight. So my other question is has anyone got there port moved to a different location? Mine is under my clavicle but under my neck towards the center of my chest (not in the center though). My other question is where is everyone's port located? I read you can get them in the arm.

Hi there, just have a minute, but wondered if you know what specific port you have? I ask because I had the purple "Power Port" and it was quite large. I have a pretty big bust, so it it never stuck out a ton. It was/is always the scar that I didn't like. I only had it for a few years before it broke (literally), but that's neither here nor there.

My reason for asking is that when I was looking into getting mine, my hospital did have a "low profile" option, which was much thinner. They also had a child-size port which is an option for smaller people. Those may be options worth looking into for you.

This is just hearsay (I have zero personal experience or scientific evidence), but I have heard that the arm placements tend to have more problems. However, I do know of a person or two that had them in their arms and loved it. So it's a tough call (what isn't?).

Anyway, good luck to you and take care,

Autumn 34 w/cf

 

[shay]

Hi Randomgirl. My daughter is 18 years old and is on her second port. Her port is placed on her side, under her arm. Her pediatric surgeon does this specifically for the aesthetic reasons you mentioned. The only time it really shows is when she wears a bikini or halter or something, but it is much less noticeable under her arm than on her chest. The only down side that I can see is that it would be difficult for her to access it herself. (I do that for her.)

 

[windex125]

Hi, I've had mine in since 2001 it is in the same place as jshet's I've been told it is child sized, never knew that it's also a double. I was upset the first few years as well, now I do not even know its there, but I do see it, I've think it's moved upward more over the years with the use of it. I call it my buttons. I as well always tried to cover it in the beginning, but now do not care. But I am older so not much borthers me anymore. how abt trying layering like a lacy camisole under a top that will come a little lower than the cami, it will cover the port. and you can possibly wear a shirt/shirts you like? Just a idea? Good Luck also great news new lungs AHHHH

 

[Meg73]

Windex--that's a long-lasting port! I love to hear of ports lasting a long time.