Port Advice

[Beaz]

Hi. Hope I can glean some good advice from those who've been there. My almost seven year old son is most likely looking at a hospitalization next week for IV ABs. The last time we were inpatient the interventional radiologist who placed the PICC said they MIGHT be able to do one more PICC, but ideally it is time to go to a port. What advice do you have and what do you wish you knew BEFORE you had your port placed? What kind of port do you have? Any problems? Thanks in advance for your help/advice.

 

[idajune]

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. Seeing as I am older I guess I have a different out look on it. 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. At your sons age I am sure he will have to be a bit more careful, not too much rough housing, but I think the ease off the mind is a great bonus. Oh, 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, and if your son does do a vest, don't have the port acessed right after placement, that is uncomfortable when it is trying to heal and yet having it accessed. Okay, that was kind of choppy, hope that helped.

 

[EmilysMom]

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. )

 

[HollyCatheryn]

I also love my port. I wish I'd gotten it years before I did so I could avoid all those horrible sticking and digging trial and error IV's that didn't last long enough to make it worth the while. I am on my second port and have had it for over 7 years. I've had no problems. There are, as Emily's mom mentioned briefly, alternative places for ports other than the usual sub clavical spot. Most guys I have known have not been bothered by that spot the way girls are though and your guy is probably not to the age where he's worried about impressing people, so it matters less. That spot usually won't show much, if at all under clothes when it is not accessed. I have mine under my right arm, even with my nipple. I love it there because it doesn't show in a swimsuit unaccessed and it doesn't show under regular clothes, even when it is accessed. It's a nice spot for me because I have a 2 yr old and we're always rough housing. It's out of the way enough that I don't even have to be that cautious when I'm accessed. You might just ask around about possible placement sites, though you ought to keep in mind this: If he has to have it replaced someday, they may or may not be able to reuse the same site. So, you might want to pick a spot now that will allow him to make a more discreet placement choice later on as a teen or young adult. One thing that was very helpful for me was meeting a person who had a port and asking my own questions, touching it beneath their skin and seeing it for myself. It took a lot of the fear out of it. He may want to see what the thing looks like before it is implanted - I got to and it was pretty interesting.PS - having or not having a port is not a statement about how healthy or sick a person is. It is about making life as uncomplicated and pain free as possible. I wish I had known <EM>that.</EM>

 

[anonymous]

Sorry it's kind of a late reply. Better late than never. My son got a port when he was nine. They started suggesting about age 8. He is now 12. They have trouble getting picc lines in and keeping them in. It has made tune ups soooo less stressful and I'm not as nervous with home IV's. My daughter is seven I imagine it won't be much longer before they start mentioning it with her. So far she hasn't needed as many tune-ups.

Farmfamily

 

[StephG]

Hi. My name is Stephanie and I am new to this forum. My daughter is 9 months old and has a port. It was by my insistance that she have one because as being a nurse I know all the frustration of not having reliable access therefore causing pain and trauma. I would highly advice anyone with a child with CF to get one. It is such a relief to know my child does not have to be "dug into" with every IV ab. or blood draw. By the way, I'm excited to be a part of this. I need this. Thank you.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I know a guy with a port right below the collar bone and he is a weight lifter (yes with cf). So the rough houseing thing you might jsut ask the doc about...depends on where its located and if it sticks out alot. The bump size depends on how skinny you are and what size port they put in, of course tehy have a pediactric size. I have heard of people getting a port on their upper arm, my surgeon is against the arm because it is to active and its a dirtier spot however some people say they love it on the arm. I did know a little girl about 7, who had a port place on her upper arm and she was so skinny and her weight flucuated so much it detached itsself from the muscle the surgeon secured it to and started slipping to where it was litterally at her arm pit. I saw it myself. She was so tiny even with the smallest port they had this thing looked huge on her. So when your son gets on ask where the best place is for him, hi size and activity level. I have my under my right breast and i like it there it is well hidden and it never moves no matter how active. My friend the body builder loves his where it is (below collar bone), the only thing he can't do is a certain bench press because it could put to much stress on the port or something.
Anything i wish i would have known before i got my port.......WHY DIDN"T THEY GIVE ME ONE SOONER? Seriously!
For me mine sticks out a bit but like i said is hidden because its under my breast enough to where shirts cover it well. Thats really the only thing that bugs me and it doesn't bug me all that much. I still go out in a bikni. The surgeron that did place my first one (yes i am on my second), said that ports last a long time if you don't have clotting problems, it is flushed properly, caution taken when accessing and taking meds (being really clean and careful). He said he has had several last 10+ years and those were when they first came out and weren't as well made and sizeable as they are now. He said that parents should take in mind that you shouldn't expect a port to last forever on children. This is why, they grow. Like a picc line they have to measure the catheter and as your child grows that catheter doesn;t so eventually the port will have to be replaced just because it has become to small. He also said depending on the age of the child and how fast they grow they can still last several years.

I am sure when you talk more to your son's doctors that they will explain everything to you I am just trying to share my info. I know i like to know everything i can before hand and still ask questions when the time comes jsut so I am prepared and know what to ask.

If I had to replace my port once a year I would still think its worth it. I might not like all the scars with once a year port replacements but it sure beats getting poked and proded and dug around in for hours on end trying to get a PICC started for just one round of antibotics when I usually need them 4+ times a year. Besides the fact that I have had so many PICCs my viens are ruined and could no longer take a PICC.....thats what finally got my docs to say I needed a port even though I was routinely getting IVs at that time 3+ a year.
OK sorry for such a long post. Sorta rambling and slight venting at the same time. Sorry if i went to much off topic or as we call it here "chasing rabbits"
AB

 

[MarkR]

Ports are the greatest thing. ive had five of them and if I still needed alot of IVs I would get another one.
My veins are so shot I have a real bad time even getting labs done. So go for it