I saw my doctor yesterday and he wanted to put my on home I.V.s. They try to put the PICC in two different ways, and the end result was 5 holes in my arm and no I.V. I need the antibiotics, and it's up for debate now whether when I go back in Monday whether to try again to put the PICC in or have a port put in. I really didn't get a chance to talk to him about it because we'd been at the hospital all day, I was worn from all the poking and proding they'd been doing, and the clinic was closing. What I really would like is some personal experiences with ports. My step-father is several states away and when I told him I was considering it he freaked out and thought it was a bad idea. I think he may be going on outdated info though. Could some of you with ports please tell me of any complications that you may have had, or if having a port has just been a breeze?? My step-dad has me really worried now because he makes it sound like getting the port is going to be the death of me. Maybe give me a little info about ports as well?? It's implanted in the jugular or the subclavian vein right?? (My dad thinks its put into the aorta, and personally that what I thought too until I looked up some info on a website.) Any info, or stories are welcomed.ThanksTiffany 21 w/cf
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Debating whether to get a port
- Thread starter usngreer
- Start date
i had one recently put in. the operation went well, except i had a reaction to an antibiotic they gave during surgery. ive only had my port used once and it hasnt been flushed since so i dont know if its still in working order. but its a big relief to have it. knowing that if i need ivs there none of this business of stuffing around with cvcs etc. and FAR LESS pain once its healed etc. only problem is, now i dont mean to scare you in any way [im just an unlucky person] today i found out i have 2 blood clots near my arm. apparently they can be quite common with ports, that mixed with my families bad luck curse <img src="i/expressions/face-icon-small-happy.gif" border="0"> i think the main thing is to be aware of what can go wrong so you know what to do the odd chance it happens. for about a week my arm was going numb and blue and the veins were popping out. got it ultrasounded today and now i have to go on clexane shots and warfarin. but im still glad i got my port!!!i have mine on the side of my rib cage under my boob. that way no one can see it when i wear singlets. its a bit weird having something on the side but im starting to get use to sleeping on it. at first it was very painful. because of the position i have mine in it involved more cuts and pulling of the skin. maybe get your doc to give you some pamphlets. i found web sites about ports to be pretty much useless on here. not enough diagrams and pictures. if i can find the diagram of all the places you can get them put in i will scan it for you. tell your step dad once its in, he will probably forget all about it and wonder what the fuss was all about! my partner was all weird about it. but thats because he was severly misinformed lol. he thought id have this huge thing on top of my skin! oh the look of relief on his face when i told him he was wrong.
I posted this under the family file, for a question that also pertained to the port. If you have any further questions, e-mail me at sasieb02@smumn.edu A "port" is different than a line put into the main vein in your neck, or such things as Hikmens (something like that), know which one your doctor is considering. I LOVE MY port, it has been one of the greatest stress relievers when it comes to being ill, I don't have to worry about whether they will get into my vein. And when not accessed, I hardly know it is there. -----I didn't start having IVs until I was 17, I suffered with peripherals and PICCS for about three years before I got the port-a-cath and I must say it is one of the greatest decisions I have made. I was to the point peripherals lasted a day and a half at the most, throughout a two week course of IV's I would become depressed and angry. My first port lasted five years, I had the second put in two years ago. Many don't like the port 'bump' and feel it is visible, and understandably it makes many feel different, most especially when going shirtless or swimsuits - of course depending on gender. I rather have a bump and have everyone look then to spend another moment being poked, poked and re-poked. Accessing is easy, I don't do it myself, but there are many who do. It can be numbed with a topical numbing cream so the accessing is not felt. I also do the therapy vest, and I am able to use a cushion around the acessed port when doing my treatments. One other thing, it is painful after placement, but only for about a week. With my first one, I had irritating pain for about five days, then 'boom' just like that in the middle of the day the pain was gone. Oh, don't have the port acessed right after placement, that is uncomfortable when it is trying to heal and yet having it accessed - more so not have it accessed if you do the vest, or avoid the vest but do other treatments for a few days. Okay, that was kind of choppy, hope that helped. -------------------------Sarah 27/cf 'Sometimes on the way to a dream you get lost and find a better one'
Similar to Sarah, I also love my port. I was 17 when I had my first IV's and actually had my port put in shortly there after. I actually have my port placed near my left breast, so I am able to cover it with my bras or swimsuit tops. I love the freedom the port has afforded me. I typically only stay in the hospital a couple of days and can do the rest from home easily. I have had the port clot up on me a few times over the years, but nothing that has been irreversible. I also flush my port myself and have been for over 10 years...anything to make me as independant as possible!I would be happy to talk more about my experience if you would be interested.Good luck,Tanya30 w/cfsloant@u.washington.edu
I too love my port! However, it is not without it's problems. I started getting IV's when I was around 10 or so. For so many years I got poked and prodded all up and down my arms until finally there was NOTHING left to poke! I was 20 when I got my first port. I was only getting IV's about once a year, but there was really no choice as there were no veins in my arms left and the PICC lines were getting harder and harder to place. I was so scared to get the port. I fought it for so long, but when I got it I couldn't believe how much easier it made everything. I was like why didn't I get this sooner! LOL. Anyway, when I got the port placed I did get a pneumothorax. They had put me in a twilight and laid me on my back and of course I coughed when they were threading the needle through. After that though, everything was great. It lasted for 5 years before it clotted up. I got the second port placed on the other side of my chest. It is above my breast, sort of in the fleshy part by your armpit (where you put your hand when you say the pledge of allegience). Anyway, about 3 weeks after that my face and neck swelled up and they told me I had blood clots in my chest and upper arms. I went on Coumadin for 6 months and my facial swelling did go down, but I still don't quite look like I used to. My face is fuller than it was. Anyway, now I'm told by my transplant team that my superior vena cava (which is what the catheter of the port is in) is blocked due to damage to the vein wall from the clots. They say it's not too big a deal, I did develop lots of other veins for my blood to go around this vessel. Blood clots do run in my family though and it is one of the complications of getting a port. Honestly though, I would do it all over again if I had to. I still love my port and would get another one in a heartbeat. I go to a local hospital to have it flushed once a month. You can't really even see mine at all, all you can see is the scar, which is fading. I hope this answers your questions, don't let it scare you, they really do make everything much easier!Martha 29, CF
I am putting up links from another site that has had several posts on ports. The good and bad. Also a link to a page that describes them, it has a diagram but like what Kylie said not enough to show you where all they can place them. Just copy and past the links, make sure you get the whole thing. http://groups.msn.com/CysticFibrosis2chat/general.msnw?action=get_message&mview=0&ID_Message=11973&LastModified=4675481456692787550That one was started because she knew all the pros and wanted to know the cons.http://groups.msn.com/CysticFibrosis2chat/general.msnw?action=get_message&mview=0&ID_Message=4734&LastModified=4675439113989552986http://groups.msn.com/CysticFibrosis2chat/general.msnw?action=get_message&mview=0&ID_Message=4329&LastModified=4675435822964610863that one says there is a picture, and there is but it is moved to page 4 or 5 under Amanda's Lifehttp://groups.msn.com/CysticFibrosis2chat/portinfo.msnwthats the general info for ports on that websitethats all that i could recover from that site. i can even find the posts that were on this one before it was "remodeled" there were lots of port posts then.I have a port and I love mine. Mine is also what is in the picture. It is bigger than most, long story short i had to have it placed in a small town and the surgen usually only put them in cancer patients and that was the smallest he had. Even with it being a bit bigger its unnoticable, you can only see it through shirts if it is accessed for meds and even then you have to point it out most of the time. The only pain i have from it was right after it was placed. and when accessed i feel a sharp pinch for about 2 seconds. Also if i lay on it wrong or bump it while accessed, and even if its unaccessed but that has to be a big bump for me to notice. I was forced to get one after PICCS no longer could be threaded...Like your story they tried both arms several times the last time i was supposed to have a picc. i looked like i had been beat up after that. but i wish i would have had a port sooner it would have saved me a whole lot of pain and trouble. also baths and showering even while accessed is really easy. even easier if you have a removable showerhead attached to one of those hose things when accessed. for me the pros out way the cons most definately. there is nothing to be scared of really. yes they can become clogged with blood clots or even protiens from ivs meds (usually only if not flushed properly). most of the time the blood clots can be thinned and removed by simply putting a certain med in it. there is a higher risk of infection with ports but i think its rare i have only heard of one case, my surgeon had told me that its rare but you still need to take care of it like its not. the only thing i have found to be complicated with it and risky is the actual surgery to have it placed and it was a day surgery...only took about an hour to have it put in. i do know a girl that hates hers. she thinks its gross and hates the bump. i have to admit though that no matter how big or small your port is it takes som getting used to the bump and it always looks bigger to the person who has it. if nothing we have replies has helped maybe ask some specific questions. but i hope we have helped some.Amanda
Emily started getting PICC lines at about 17. She immediately started having trouble with the PICCs from the beginning. We would end up at the ER at 3:00 or 4:00 in the morning having to have it pulled and a new one put in the other arm due to mechanical phlebitis. After about the 9th or 10th time, she opted for a port. BEST DECISION EVER! The surgery was okay and the recovery was a little longer than we thought but what a great thing! She now does her own IV therapy at home. She accesses it herself and does peaks and troughs at a local drawing station. Her meds are delivered by a home nursing company. She flushes it herself once a month. Life is much easier for her and us with the port. Hers is located just inder her left boob at the top of her rib cage. Its very obvious in her swim suit but it doesn't bother her. People stare but they also stare at the scar from her meconium ileus surgery so she has learned to live with stares. She usually stares back! Kids ask questions and she always answers them as easily as she can so they understand. <img src="i/expressions/face-icon-small-blush.gif" border="0">)
I got my port last year, when i was 17 and its the best thing i ever did. i've had it for about 18 months now and have had no problems with it. it makes everything so much easier...especially not having to worry about whether they will find a vein or not. I LOVE IT!!! compared to a lot of people mine is quite big but i don't care at all because it just helped me so much. i would definitely recommend anyone getting one because it makes hospital admissions a lot more stress free.Kady 18 oz
Thanks for all the info guys. It was really helpful. I am now the new receipant of a port. Still a little nervous about it all, especially having an 8 month son and all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I think I will grow to enjoy it as much as the rest of you.Thanks again!!Tiffany 21 w/CF
so have you got it yet or are you waiting for the op? tell us how everything goes! you will be nervous about it for a while. i was worrying about it non stop for about a month after i got it placed. its pretty weird having some permanent thing in your body at first. have some fun with it. go round to people who have no idea what it is and say 'poke it!'. they think you have some cancerous growth in you until you tell them whats going on lol. hope everythings ok.
LOL! You guys are funny. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I did have the surgery Monday, so I don't want people poking it quite yet because I'm still a little sore. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My Mom and sister are visiting me from Ohio, (I live in Georgia,) and since it's accessed they're totally grossed out by it. Especially when I go into detail about it being really creepy that the needle stays in. It really sucks having it accessed right after surgery, because not only do you have the itching from the tap you have the itching from the healing. It's driving me nuts!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> So now that I have it do you think you could give me some tips as how to scratch it?? <img src="i/expressions/face-icon-small-smile.gif" border="0"> j/kThanks again guys. It was really helpful.Tiffany 21 w/CF
serendipity730
New member
Wow! I amazed that you all love your ports so much! I am easily on my 30th PICC line, and now have to get them with interventional radiology. But, personally, I intend to get them until I haven't a good vein left in my arm. I just don't want anything permanent like that. But I am glad to hear that people haven't found it to be such a terrible thing (especially girls) for when that day comes. Mary
glad everything went well then tiffany! i know what you mean about the itching. i get that whenever i have anything taped to my skin. when they change the dressing get them to hand you a sterile cotton swab and you can have a good dig at it. oh the relief <img src="i/expressions/face-icon-small-happy.gif" border="0">