I'm posting this on the teen site because I would like some advice from someone who's gone or going through this too. We just found out that our almost 16yr old daughter won't be able to use a picc line anymore. Her veins have had it. She's put off the idea of a port for the last year and a half and now there is no other choice. Her main concern as you may guess is what will she look like in a bathing suit (bikini specifically)? They say that it can be put in the bra line and that you can wear a suit and it will not be noticeable. IS this true? Can you tell me your experience with a port? She gets hers put in on Monday 3/3/03. Any help you can give me would be greatly appreciated. Thanks so much! Posted by Liza on February 27, 2003 at 13:00:23NOTE: this message has been transfered from the old CysticFibrosis.com forums.
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My daughter has to get a port
- Thread starter anonymous
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Hello. I am almost 38 with CF. I got my port a year ago. My port is right above my right breast. I asked my surgeon to put it as low as he could go because I wear cocktail dresses! I have to admit I am pretty busty (38 D) and you can notice my port only by the scar that is still disapearing. I am so glad I got the port. Some people get it up by the shoulder, etc. You want to ask to put it as low as you can go so she can wear a bathing suit. When my port is accessed it is strange, but when your in this situation your not really out running around anyway. Let me know what goes on. God Bless.Monique Posted by Monique on March 01, 2003 at 07:49:31NOTE: this message has been transfered from the old CysticFibrosis.com forums.
I am 19 might as well say 20, be 20 in less than a week, yea me! lol. I have a port under my right breast kinda at the bra line but a little lower. Umm this causes a problem with bras, I have to wear one with no underwire or no bra at all. Luckly I am small in this area so I can get away with it. My port is a little bigger than most because I had to have it replaced because the old one got clogged and had to be replaced rather quickly because of my wedding and I think the dr thought this one would be small enough. But oh well. Where my port is it is hard to see with shirts but some tight blouses you can see the bump. But my breast pretty much hides the port and you can't see it through shirts or anything. If she gets the port placed in the same place or like you were saying the bra line, yes she can find a bathing suit that can hide it. I did this when I first got my port. There wasn't even a scar to show. (the way my doc put in the port there was two incesions one at the port location and a tiny cut in my shoulder area where they dragged the line.) But since I had mine replaced I have some scaring but I think they are cool I have even tricked some ppl saying I got into a fight and a knife was pulled on me...lol..but i tell them the truth. When I first got the port (my smaller one) I hid it all the time. I thougth you could see it so I wouldn't wear tight clothing or go swiming without a shirt, even thoguht I had a bathing suit that hid it. But i have always been self conises about my body anyway. But I have gotten over it. Now I don't care I am wanting a regular bikni this year. I don't care what ppl say and the ones that I hang out with know anyway so whats the point in hiding it. I know your daughter is probably concerned with boys looking at it, but the ones taht have a problem with it aren't for her anyway, right? Like I said she can find a suit that hides it or even find a cute little swiming top to go over her suit. You know the ones that they make with small holes in it or the shear ones. You can see the cute suit and body underneath but the sheer shirt hides the port.The cons are so small compared to the pros of having port. I mean you don't have to get stuck and have bruises all over your arms just because your veins are getting tired. Its get poked once have meds and your done. The port needle satys in for the whole med period, it will need changing every 7 days during meds but its no big deal. Just a little prick (well if the nurse is good at it and if not it still not so bad). And when your not on meds an ocassional flush that doesn't take but 2 minutes and doesn't hurt. Tell your daughter that once she gets the port she will love it. It takes some getting used to at first. If she needs to talk or you I am here you can e-mail me. akcooper_01@hotmail.com or visit my Cf chat group at http://groups.msn.com/CysticFibrosis2chat/homepage there are alot of ppl there willing to talk many parents and teenagers and even some younger ppl. Sorry for such a long post.God BlessAmanda Posted by Amanda on February 28, 2003 at 14:02:06NOTE: this message has been transfered from the old CysticFibrosis.com forums.
Thank you guys so much for your responses! It has been a great help. The docs and nurses can talk til they're blue in the face but sometimes it takes someone who's been through it to give some insite. Don't get me wrong, our team is great and they are very understandable and compassionate but they aren't teenagers having to go through it. Aparently they have come out with a new smaller port recently and that is what she is getting. Let me ask you guys another question if I can. She has a weight training class for gym this semeseter. Do you think that having a port will be a problem for her to complete that class? If she drops it she gets a drop/fail and she's already lost two credits this year due to hospitalizations, she can't afford to lose any more going into her Jr. year in HS. Thanks again for your posts! Posted by Liza on February 28, 2003 at 15:43:06NOTE: this message has been transfered from the old CysticFibrosis.com forums.
No having a weight training class won't effect anything. If she has just had surgery and has to take the class then it might hurt some. Plus for a few months it might feel like it pulls some where the port is but nothing to serious. But if she is doing something and it is real painful and maybe a bruise comes up it might be worth asking a doctor about. But with a port you can do any normal activity. Swiming, weight lifting, wrestling (i guess) I think having the port for me just makes me more causious. I don't want to hurt it because if something does hit it like a basketball or if some one hugs you the wrong way it can hurt. I mean your not going to pull it out of place unless something real bad happens. But I can kinda move mine back and forth but if it is moved to much i can feel it pull and it hurts. Ok so i repeat myself but you get the point. Does her school not take exceptions for drop/fail for medical reasons. I couldn't take P.E. in high school which was a credit but the just put me in another class to make up for it and have to put a doctors note as a reason why I couldn't take the class. I mean exersise is good its just some teachers push you to hard illness or not and that would make me sick I couldn't handle it physically. I still exersised at home but at my own pace. Hope I helped some how. As I said before if your daughter would like to talk as a pen pal or even you I don't mind. I like e-mails and pen pals. And anyone else who would like to be a pen pal.God BlessAmanda Posted by Amanda on February 28, 2003 at 16:47:56NOTE: this message has been transfered from the old CysticFibrosis.com forums.
I have had my port since I was 16 (I am now 21). I had it placed right under my left collar bone. I was taking Martial Arts at the time. I did not have to quit. I did have to slow down a bit after the surgery, just to let my body heal a bit, but after a month I was right back in doing my routine. Now I do some light weitht lifting and haven't had any problems in reference to my port. It doesn't really show with my clothing either. It just looks like a light bruise sometimes but mostly it's not noticeable.-Sunnie Posted by Sunnie on March 02, 2003 at 23:34:41NOTE: this message has been transfered from the old CysticFibrosis.com forums.
Hi, Can I ask? How old was your daughter Emily when she got her port? Anna finally got hers put in and immediately was unhappy with the location. She told them where she wanted it, we told them just before they wheeled her off that she wanted it as low as possible so that it can be hidden underneath a swimsuit. She can just about touch her chin to it. She was quite sore and hasn't returned to school yet. It's been about 11 days now. She says she'll be ready this week. I think she is getting used to it and even says she has found a swimsuit in a catalog. I surely hope so. She was also unhappy about how the dressing stuck out so much but we told her it was just swelling and that they put alot of dressing on it. When they changed her needle she got to see it and immediatley asked how much swelling was left because it was sticking up. She asked them to put a much smaller dressing on it and she's much happier now. I guess she is coming to terms with it now but hated it and actually said she wanted it out and how she wished she'd never got it in the first place. I don't know how much emotion is from the CF, the port, and just being 15 or if it's a combination of it all. Thanks everyone for your advice and experience it's been a great help.Liza
Hi! I got my port in halfway through my freshman year of high school, so I guess I was about 15 as well. I had a really hard time getting over the surgery, it took me about 2 weeks before it stopped hurting me and I felt ok walking around and wearing a bra (mine is about 2 inches below my left collarbone). However, I have really come to appreciate it because it means not so many nights spent digging in my veins for Picc lines!!! Mine isn't that noticeable itself, the most noticeable thing is the scar right above it, which has faded some in the last 6 years. However, I wear bathing suits and hardly anyone seems to notice ( I'm sure I'm more aware of it than anyone ). When someone asks and I don't want to explain, I usually just say I had to have stitches or I had surgery. Most people aren't nosy enough to keep bugging you after that! When I have it accessed, I just wear shirts that are more highly cut so that it is covered up, and as long as the shirt isn't extremely tight, you can't even tell the needle is in there! The only bad thing is when I'm doing IV's, they still have to draw the peaks and troughs (to check my kidneys) from my arms or hands...but usually they only have to do that once a week, so that's not so bad. And make sure and tell your daughter if she is experiencing pain when they access it to flush it monthly that it won't be long before she won't even feel it. I think the nerves deaden or something, it hasn't bothered me in years! If you have any other questions, feel free to e-mail me, my name is Jenny, at jenhum@email.unc.edu.
Hi! I got my port in halfway through my freshman year of high school, so I guess I was about 15 as well. I had a really hard time getting over the surgery, it took me about 2 weeks before it stopped hurting me and I felt ok walking around and wearing a bra (mine is about 2 inches below my left collarbone). However, I have really come to appreciate it because it means not so many nights spent digging in my veins for Picc lines!!! Mine isn't that noticeable itself, the most noticeable thing is the scar right above it, which has faded some in the last 6 years. However, I wear bathing suits and hardly anyone seems to notice ( I'm sure I'm more aware of it than anyone ). When someone asks and I don't want to explain, I usually just say I had to have stitches or I had surgery. Most people aren't nosy enough to keep bugging you after that! When I have it accessed, I just wear shirts that are more highly cut so that it is covered up, and as long as the shirt isn't extremely tight, you can't even tell the needle is in there! The only bad thing is when I'm doing IV's, they still have to draw the peaks and troughs (to check my kidneys) from my arms or hands...but usually they only have to do that once a week, so that's not so bad. And make sure and tell your daughter if she is experiencing pain when they access it to flush it monthly that it won't be long before she won't even feel it. I think the nerves deaden or something, it hasn't bothered me in years! If you have any other questions, feel free to e-mail me, my name is Jenny, at jenhum@email.unc.edu.
Hi Jenny, Thank you so much for your experience! It seems that Anna's is in the same location only on her right side. She went back to school today and said that she asked her friends if they could tell where she had her procedure done and they guessed it right off. So now she doesn't believe any of us when we tell her that it's not noticeable. I think she still has some adjustment to do but at least she is looking at bathing suits. That's a start I think. Now the dietician is starting on her about a feeding tube. She won't even discuss it. It's kind of frustrating because I told the dietician on the phone what Anna's feeling were and that it's definantly not something to bring up right now. Anyway off the subject. I think once she is finished with her antibiotics and can leave the bandage off and it finishes healing she will get more used to it. It was good to hear though that she is not the only one that took a couple of weeks to heal from the soreness. She had her needle changed today so she was sore for a couple of hours afterwards, that compounded by a bad mood from having to go another 9 days on antibiotics made it a bad afternoon. Thanks again for your input, it really helps.Liza
Hi Jenny, Thank you so much for your experience! It seems that Anna's is in the same location only on her right side. She went back to school today and said that she asked her friends if they could tell where she had her procedure done and they guessed it right off. So now she doesn't believe any of us when we tell her that it's not noticeable. I think she still has some adjustment to do but at least she is looking at bathing suits. That's a start I think. Now the dietician is starting on her about a feeding tube. She won't even discuss it. It's kind of frustrating because I told the dietician on the phone what Anna's feeling were and that it's definantly not something to bring up right now. Anyway off the subject. I think once she is finished with her antibiotics and can leave the bandage off and it finishes healing she will get more used to it. It was good to hear though that she is not the only one that took a couple of weeks to heal from the soreness. She had her needle changed today so she was sore for a couple of hours afterwards, that compounded by a bad mood from having to go another 9 days on antibiotics made it a bad afternoon. Thanks again for your input, it really helps.Liza
Emily was 18 when she had her port put in. At first she hated too BIG TIME. She wanted it moved ore moved or anything. That was five months ago and now she is perfcectly happy with it. It is just below her left breast. It sticks out but she has never been one to worry about "how things look". She has always worn a two piece swimsuit even though she has a 6" scar from surgery at two days of age. She is not a bit worried about how it looks...as a matter of fact, she is always happy to answer any questions about it rather than have people stare.Barbara
Emily was 18 when she had her port put in. At first she hated too BIG TIME. She wanted it moved ore moved or anything. That was five months ago and now she is perfcectly happy with it. It is just below her left breast. It sticks out but she has never been one to worry about "how things look". She has always worn a two piece swimsuit even though she has a 6" scar from surgery at two days of age. She is not a bit worried about how it looks...as a matter of fact, she is always happy to answer any questions about it rather than have people stare.Barbara
I didn't know you could get it put in your arm. Anna's arms are real thin though, she probably wouldn't have gone for it there. She's 5'5" and about 100lbs. give or take two on any given day. She is still having trouble with it. I am hoping she will be finished with her antibiotics at her appt. this week and that she can finally have a chance to really heal. What she wants most right now is a shower without saran wrap. Thanks everybody.Liza