can anyone youngish tell my daughter about having a port?

[vampress]

hi, my 9 year old daughter "Chloe" has cf, shes not doing too well at the minute, she cant put weight on and her lungs are bad, shes on IV`s every 3 months, but latley its getting harder and harder to get a line in her arm, they tried 12 times last week and its really upseting us all.
the nurse has said the best thing for her is to have a port, and after my research i agree, it will be a lot easier for her when she needs her ivs, but chloes really against it, she said shes scared about the op, and about having a needle pushed into her chest when she needs IVs but ive told her she wouldnt feel it and its a lot better than having a iv in her arm!
i would appriciate it if there are any young people who can tell my daughter how good it is and that she has nothing to worry about! if any of you reply i will let her read it, thanks everyone,
nikki and steve.

 

[anonymous]

HI, my name is Cariann and i am 19 years old. I got a port at 13. I know what she is going through, the thought of having a needle going into your chest!! That is realy weird and very scary. I had very bad veins and it took them several time to put a line in and then after they got it in it would blow or hurt really bad! So i finally agread to have a chest port, It was the best thing that i have ever done for myself. So now when i go in they know exactly where to poke me and now, having it for a long time i dont even use emla cream. I would suggest her getting one! I love mine to death. The only thing i dont like about it is that you have to have it flushed ever 4-6 weeks. But if it bothers you she could have emla cream put on and she wont feel it! Has she ever sen one before? I got to see what one looked like and then play with it. That really halped me out, knowing that almost the whole thing was medel except the top part which is like rubber. SO the needle wont go through the back side, like i thought it would do and that is what scared me the most. So, the surgery, yah it is like any other surgery, they put you out and the you wake up and it is all done and you go to raise your right arm and man, the muscle hurts so bad, but the next day i was way better and it didnt hurt! So it was worth everything!! Hey if you have any questions you can e-mail me at Cariann2005Rob@excite.com I would be more than happy to answer any questions. By the way, if you take care of your port by having it flushed out ever 4-6 weeks and not let anyone not use alcohol to connect the lines and just basically take good care of it, there is no reason why it can't last years, mine is going on 7 years on the 14 of feb. so yah just email me if you have any questions!!!

 

[shamrock]

I have one too since I was 9 (now 17) but I ALWAYS use emla or amnytop cream when I'm getting needles put in.<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Dear Chloe and Nikki,
My name is Amber I am 12 years old and I have CF, Asthma, and Diabetis! It has been really hard! I have a port and a g-tube. I got my g-tube in 2002, the day before Thanks Giving, that was kinda a bummer! Then in 2003 I got a port because I could not have any more picks. The doctor could not put any more in because of so much scar tissue! I have had picks in my arms and neck and upper chest. Finally they decided to give me a port. Please e-mail me I would love to here from you knowing I am not the only one who has been through all this. My e-mail address is hon-in_the_sun@yahoo.com or sixtyfiveroses92 @yahoo.com!
Amber

 

[anonymous]

Hi
I think that getting a port was the best thing in the world and i am glad i got it! I had to have 2 because the first one went bad! But now I am doing great! From Amber !2 years old

 

[Emily65Roses]

Just FYI, they're not picks, they're PICCs. Peripherally Inserted Central Catheter. <img src="i/expressions/rose.gif" border="0">

 

[vampress]

hi amber..ive sent you an email!
we dont say piccs in england, they are just called long-short lines, or line, or just IV.. never heard of piccs.

 

[anonymous]

wow some one else from england....!! long lines sound better than piccs! I have had 2 ports in as had complications with the first one. But i agree with everyone else they are definatly a better long term solution. However i would suggest thinking seriously about where to have it inserted. A lot of ppl tend to go for the top chest. Mine is neatly tucked away beside my left arm underneath my breast. the reason for having it there is i can hide it quite well with my arm so it doesnt get knocked when im clubbin or what not!... and it realy isnt that obvious and doesnt stick out too much as this is something i became concious about. Again if you use ami-top b4 inserting the needle you dont feel a thing! And she may even learn to change the needle herself one day.
my email address is emzy.86@gmail.com would love to hear from you.

emma 18 cf uk!

 

[anonymous]

ports are the same as the implantafix right?

 

[shamrock]

Sorry that was me!<img src="i/expressions/face-icon-small-blush.gif" border="0">forgot to log in!<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

erm not sure !?!

emmz 18 cf uk

 

[shamrock]

Hey vampress,
How is your daughter? Have you made up your mind about the port yet?<img src="i/expressions/musicnote.gif" border="0"><img src="i/expressions/rose.gif" border="0">

 

[vampress]

hi shamrock,
yes she is going to have it done, we all think its for the best...she still backs out though, but it will get booked soon and she wont be able to change her mind!
thanks for asking!
niki.

 

[EmilysMom]

Niki,
Emily had hers done when she was 18 (I think) after several years of picc lines and MANY trips to the ER. Every time she had IV therapy, her picc lines got mechanical phlebitis every single time and they had to be pulled and redone EVERY SINGLE TIME. I lost count of how many times in the middle of the night we ended up at the ER to have the lines pulled. After several thousand of those, the doctor finally said "get a port". Best decision she ever made! Now she does all her IV therapy at home. She flushes it at home or school by herself every month. (although she has taught her boyfriend how to do it too). No more late night trips to the ER to have infected Picc lines pulled. Plus with the port, if she wants to swim or shower, she just pulls the needle, swims or showers, and resticks herself for the next dose. You can't do that with a picc line. More freedom with a port! Your daughter will be glad she made the choice! (after recovering from the surgery....a couple of days) ;o)

 

[anonymous]

hi my name is annie wisenbaker and i have cystic fibrosis just like your daughter. Im 11 and i had my port taken out when i was 3 years old. they put the medicen in the port so you can't even feel it . dont wory it will be fine.

 

[Emily65Roses]

Yes, mom, I was 18 when I got my port. And I agree. It was such a good decision.

 

[heidinicole85]

hi my name is Heidi. I'm 20 years old I just got a port and it's the best thing that I ever did. My doctors and I along with the IV nurses and my mom have been discussing getting a port for a few years, but I usually only get hospitalized once a year so they didn't think it was necessary. But my last hospitalization my PICC line blew and they couldn't get anymore in, so they tried to do a midline but that didn't work either. They were gonna try to put a PICC in using a dye and some machine, but that wasn't able to happen so I kept getting regualr IV's for about a week and I was going thru at least 2 a day, now that I have my port I don't need to get anymore IV's it's not uncomfortable at all, it's just a little uncomfortable when it is accessed. You can't notice it, there is a small scare and I had it put under my arm, so you can't really see it or feel it. I just have to get it flushed once a month and a homecare nurse comes out to my house and flushes it and it takes less than 5 minutes to flush it. And I would never go home on IV's when I had PICC lines because I would have problems with them at the hospital so I knew I would have problems if I went home with it in, with the Port I'm able to go home on IV meds and it's great I can do things while I'm accessed, I can still go to school and just hook up to the medications at their proper times. I'm only hooked up for about an hour and then I can get back to doing whatever I want. I can wear anything with the Port, When I had the PICC lines I could only wear t-shirts because they would get caught on anything that had long sleeves.