Portacath Users?

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Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/12/2005 4:40 AM (GMT -7)   
Hi, is anyone interested in giving information, advice, helpful hints, raves about how it's great!...etc...regarding a portacath.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.


Sylvanis
New Member


Date Joined Oct 2005
Total Posts : 7
   Posted 10/14/2005 2:32 PM (GMT -7)   
HI Twinstride

I know that my sister had 2 portacath's and she was so tiny, that they were really noticeable, and think she said one of them was the size of one that would be used for a 300 pound man! It was a great alternative to IV's because she had such small veins, that they would always roll and it was would soo difficult for the nurse to find her veins. So...hope that helps...:)

-Angela

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/15/2005 3:35 PM (GMT -7)   
Hi Angela,

Did your sister have to have the port replaced more than once?
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Sylvanis
New Member


Date Joined Oct 2005
Total Posts : 7
   Posted 10/16/2005 8:01 PM (GMT -7)   
Hiya Twinstride!

Yes she did, a couple times, and then eventually she had two, one on either side of her chest, just above her breasts. It was a really awkward place...one of them wasn't really noticeable, but the other one was, becaue it had to be replaced a couple times...

:)

-Angela

alywymark
New Member


Date Joined Nov 2005
Total Posts : 2
   Posted 11/3/2005 9:34 AM (GMT -7)   
hi my nameis aly i am 17 going on 18 i have a port fitted at the moment this is my second one as the first one got blocked, ever since having my port fitted it is so much better than the routine operations to have a tube inserted in my arm. the only down side to having a port is the scars on your neck and under the port other than that i think they are amazing :D well hope that has helped. and remember keep smiling tongue

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 11/4/2005 7:33 AM (GMT -7)   
Aly.....thanks for the message: keep smiling. Always remind me of that!.

Have a great day! :)
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Tayra
Regular Member


Date Joined Nov 2005
Total Posts : 40
   Posted 11/26/2005 11:28 AM (GMT -7)   
After 20 years of IV's we started using PICC lines for my veins - perhipherally inserted central catheters. They are desgined to stay in for 3-4 months for IV med delivery.

Now my last run required 4 different picc lines to be inserted - which is rediculous - but it demonstrated the need to get a port put in.

When I need my next round of meds I will be getting one put in - I just wanted to say thank you to everyone who posted about their ports. I was a bit nervous but I think it will be better than getting stuck with needles all the time.

Tyler
New Member


Date Joined Mar 2006
Total Posts : 5
   Posted 3/14/2006 4:27 AM (GMT -7)   
I have a port just above my left nipple, and in my opinion, as useful as it is, it is one decision that I regret. I am 18 yrs. old, and was already very self consious to begin with, now I have this HUGE dome sticking out of my chest with an equally obvious tube coming from the top of it. I don't even like to take my shirt of to go swimming in public, EVERYONE asks the SAME question: "what is that?", followed immediately by "why do you have to get so many IVs?", and then comes the "what is CF" question, and finally the pity that I DESPISE. I just wish people would mind their own l)amned business and keep their curiosity to themselves, and their save their pity for someone who needs it. I know this is very superficial of me, but try to understand where I am coming from when I tell you that I am still a virgin, so imagine how apprehensive i am to take my shirt off in front of a girl for the first time (I can hear it now: "eww! what's that?!") I am currently giving VERY serious thought to getting this wretched thing removed. One of my major concerns when I was considering getting the port was if it would be noticable. I still remember what the doctor said: "it will be slightly noticable", he never told me i would have this massive tumor-like object sticking out of my chest.

It's not only the aesthetics that bother me. When I got it, I was under the impression it was a one-stick-when-needed sort of thing, and my doctor nor my family (of which several members were oncology patients and had ports) never bothered correcting me. It's not a one stick it's done thing, and the sticks hurt just as much now as they did before i had it (another misleading bit of info i was given). This wretched thing has to be stuck once a month, whether i need medicines or not, just to be flushed out, and even when i do need medicines, the needle has to be changed once a week. A PICC line didn't have to be changed every week, and it came out after i was done with my medicines, they also didn't leave some unsightly blemish to my body that made me embarassed to take my shirt off. Finally, a PICC line also allowed blood draws (as does the port), and also could be used for CT scan contrast injection fluid (you can't get that through your port, you have to get an IV for that even with the port). HOW IS THIS ANY BETTER THAN HAVING A PICC??! I wish I could punch the doctor that convinced me to get it with his misguiding information.

missy6
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 3/14/2006 9:07 AM (GMT -7)   
hi Everyone
I was a little curious about what a portacath is..really i have never heard of one, but every time i go into the hospital I get a PICC and i love them because i don't have to o through getting IV's.
HI Everyone


Lauren Michelle
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 3/18/2006 1:16 AM (GMT -7)   
hi tyler.  I'm a 14 F with cf nd i have a port.  ive had mine for about 5 years now, and i'm really happy with it, although i c where ur coming from.  I would go to school in a blouse that just barely went under my collar bone and people would point and whisper and ak me what it was and why i had to have it and what cf was, all that junk.  After about a year, most of the people in my school had asked me what it was and knew.  as for the visibility, u can only see it when i wear a swimsuit or collar-bone length shirt.  My scar is about 1.5" long, now a pale pink.  the frst 3 or so years it was red and very noticeable, but i put that maderma or neosporin scar strips on it and it got lighter, so now it not as noticeable.
 
As for the flushing, thats not such a pain for me.  My mother is a RN (reg'd nurse) and so we order my flush supplies (sharps box, huber needle, etc. ) our insurance pays for that too.  I would do my own flushes, except i cant see to stick myself.  i use a 3/4" needle, and i think its like a 20 gauge.  I do not use emla cream, as i think its just a pain in the butt, when the initial stick is so quick and not even painful anymore, its just not worth uing emla. 
 
I had to get a port because I cant have picc s  ne more.  my veins roll and then when they do stick the vein, they cant feed the catheter!  and besides that, its so painful!  I also have a bad habit of getting flabitis in my arm where it gets so sore, and the vein basically gets burnt out, o i couldnt have a picc for more than 3 weeks.
 
Overall, I have had a great experience with my port.  If you would like to talk, I have posted my IM addresses and my email.  just have a relative subject in the subj line so i dont post it as spam. 

Lauren Michelle Kelly

Lmkelly0408@sbcglobal.net 

  

Proverbs 3:5-6

 

Trust in the Lord with all of your heart and rely not on yourself, in all times, acknowledge him. And he will make your paths straight.

 

 


kristins mom
Regular Member


Date Joined Sep 2005
Total Posts : 27
   Posted 3/20/2006 5:04 PM (GMT -7)   
When my daughter progressed to the point we were returning to the hospital every 3 months or so, I let myself be talked into trying a PICC line since she was having to restart a new IV every 2-3 days. I thought it was wonderful but when she was sent home to finish her IV s, it was a whole new set of worries!! She was an active 4 with a large dog, a swimming pool, and a jungle gym in the backyard. I was convinced that at any time we would be returning to the hospital to have it checked out due to being immersed in water or yanked out by playful paws! This may or may not have been founded but it was a real possibility in my mind. Finally, her CF pulm. sat me down and discussed the port. I was scared to death--almost as scared as Kristin, but we decided to go for it. My only regret is that I waited so long. It's not perfect, they do become clogged and have to be replaced (once in 5 years for us), and have to be flushed monthly but thats a small thing compared to regular IV's. As long as she's not accessed, she could swim, take a bubble bath, do anythink she was able to before. Since she had such a phobia of needles, the nurses would apply a cream (don't think I can say the name!) to her port site and within 45 min.-1 hour, the area would be numb so she was fine with it. I was concerned about scarring but her dr. said we did have options of locations other than the chest when she was a little older. It made such a difference that when her little brother was diagnosed at 2 weeks with CF, she informed them they needed to put one in him so he didn't have to feel the blood draws or IVs If you had known my daughter, this would convince you automatically. It is something I definately recommed seriously thinking about.
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