Mediport for my 14 year old - should we do it?

NYCLawGirl · Mar 13, 2010

I got my first port when I was 18. I was a competitive horseback rider and very very active, plus I was moving away to college. The port IN NO WAY slowed me down -- if anything you can do a lot more with a port than with PICC lines. The surgeon/radiologist will explain to you how to protect your port, but for the most part they are placed in spots where damage is unlikely b/c of rough-housing or athletics. And certainly it would be tough for anyone to "grab" the port and hurt it -- they're very small. Sometimes they are tender to the touch but I am now on my 2nd port and find that when it's not accessed I don't even feel it. Ever.

As for infection/clot risk -- you have to weigh those. The risk of infection is greater with a port UNLESS you are getting PICC lines frequently and they are difficult to insert. Ports have to be accessed once a month to flush with heparin, but the infection risk is minimal so long as proper procedure is followed. It's not nearly as invasive a procedure to access a port as it is to get a PICC placed. In my case, I was getting IVs at least 2x a year and had bad veins -- the port was definitely the SAFER option for me in terms of risk of infection and clot, not to mention vein preservation. Your doctor is the person to speak with about this.

One word of advice from someone who has been there: don't avoid a port just b/c it's scary and/or it makes CF seem more "real" in the form of a permanent device. Like everything else that is loud and visible about this disease (the VEST or oxygen someday or whatever), the port is designed to HELP your daughter and make things EASIER for her. I know it feels like you hit these milestones like a port or a g-tube or whatever and it's gross and makes you feel like your daughter is losing something to CF, but it's not at all like that. I was so worried about all that stuff when I got my port, and then I realized how much HAPPIER it made me not to have to get PICCs. How much more NORMAL I felt knowing that I could easily do home IVs without having to worry about getting a line placed. You even get to the point where you can access your port by yourself and it's really empowering. I love my line and was really sad when I lost it after 9 years and had to wait 3 months to get a new one placed. In the interim I had a PICC and it was really frustrating.

There are really good reasons to question getting a port and to talk to your doctor -- just please remember that it is only being suggested as another tool in your toolbox, so to speak. It's not in any way supposed to be limiting or a sign that CF has won yet another battle.

NYCLawGirl · Mar 13, 2010

I got my first port when I was 18. I was a competitive horseback rider and very very active, plus I was moving away to college. The port IN NO WAY slowed me down -- if anything you can do a lot more with a port than with PICC lines. The surgeon/radiologist will explain to you how to protect your port, but for the most part they are placed in spots where damage is unlikely b/c of rough-housing or athletics. And certainly it would be tough for anyone to "grab" the port and hurt it -- they're very small. Sometimes they are tender to the touch but I am now on my 2nd port and find that when it's not accessed I don't even feel it. Ever.

As for infection/clot risk -- you have to weigh those. The risk of infection is greater with a port UNLESS you are getting PICC lines frequently and they are difficult to insert. Ports have to be accessed once a month to flush with heparin, but the infection risk is minimal so long as proper procedure is followed. It's not nearly as invasive a procedure to access a port as it is to get a PICC placed. In my case, I was getting IVs at least 2x a year and had bad veins -- the port was definitely the SAFER option for me in terms of risk of infection and clot, not to mention vein preservation. Your doctor is the person to speak with about this.

One word of advice from someone who has been there: don't avoid a port just b/c it's scary and/or it makes CF seem more "real" in the form of a permanent device. Like everything else that is loud and visible about this disease (the VEST or oxygen someday or whatever), the port is designed to HELP your daughter and make things EASIER for her. I know it feels like you hit these milestones like a port or a g-tube or whatever and it's gross and makes you feel like your daughter is losing something to CF, but it's not at all like that. I was so worried about all that stuff when I got my port, and then I realized how much HAPPIER it made me not to have to get PICCs. How much more NORMAL I felt knowing that I could easily do home IVs without having to worry about getting a line placed. You even get to the point where you can access your port by yourself and it's really empowering. I love my line and was really sad when I lost it after 9 years and had to wait 3 months to get a new one placed. In the interim I had a PICC and it was really frustrating.

There are really good reasons to question getting a port and to talk to your doctor -- just please remember that it is only being suggested as another tool in your toolbox, so to speak. It's not in any way supposed to be limiting or a sign that CF has won yet another battle.

NYCLawGirl · Mar 13, 2010

I got my first port when I was 18. I was a competitive horseback rider and very very active, plus I was moving away to college. The port IN NO WAY slowed me down -- if anything you can do a lot more with a port than with PICC lines. The surgeon/radiologist will explain to you how to protect your port, but for the most part they are placed in spots where damage is unlikely b/c of rough-housing or athletics. And certainly it would be tough for anyone to "grab" the port and hurt it -- they're very small. Sometimes they are tender to the touch but I am now on my 2nd port and find that when it's not accessed I don't even feel it. Ever.

As for infection/clot risk -- you have to weigh those. The risk of infection is greater with a port UNLESS you are getting PICC lines frequently and they are difficult to insert. Ports have to be accessed once a month to flush with heparin, but the infection risk is minimal so long as proper procedure is followed. It's not nearly as invasive a procedure to access a port as it is to get a PICC placed. In my case, I was getting IVs at least 2x a year and had bad veins -- the port was definitely the SAFER option for me in terms of risk of infection and clot, not to mention vein preservation. Your doctor is the person to speak with about this.

One word of advice from someone who has been there: don't avoid a port just b/c it's scary and/or it makes CF seem more "real" in the form of a permanent device. Like everything else that is loud and visible about this disease (the VEST or oxygen someday or whatever), the port is designed to HELP your daughter and make things EASIER for her. I know it feels like you hit these milestones like a port or a g-tube or whatever and it's gross and makes you feel like your daughter is losing something to CF, but it's not at all like that. I was so worried about all that stuff when I got my port, and then I realized how much HAPPIER it made me not to have to get PICCs. How much more NORMAL I felt knowing that I could easily do home IVs without having to worry about getting a line placed. You even get to the point where you can access your port by yourself and it's really empowering. I love my line and was really sad when I lost it after 9 years and had to wait 3 months to get a new one placed. In the interim I had a PICC and it was really frustrating.

There are really good reasons to question getting a port and to talk to your doctor -- just please remember that it is only being suggested as another tool in your toolbox, so to speak. It's not in any way supposed to be limiting or a sign that CF has won yet another battle.

NYCLawGirl · Mar 13, 2010

I got my first port when I was 18. I was a competitive horseback rider and very very active, plus I was moving away to college. The port IN NO WAY slowed me down -- if anything you can do a lot more with a port than with PICC lines. The surgeon/radiologist will explain to you how to protect your port, but for the most part they are placed in spots where damage is unlikely b/c of rough-housing or athletics. And certainly it would be tough for anyone to "grab" the port and hurt it -- they're very small. Sometimes they are tender to the touch but I am now on my 2nd port and find that when it's not accessed I don't even feel it. Ever.

As for infection/clot risk -- you have to weigh those. The risk of infection is greater with a port UNLESS you are getting PICC lines frequently and they are difficult to insert. Ports have to be accessed once a month to flush with heparin, but the infection risk is minimal so long as proper procedure is followed. It's not nearly as invasive a procedure to access a port as it is to get a PICC placed. In my case, I was getting IVs at least 2x a year and had bad veins -- the port was definitely the SAFER option for me in terms of risk of infection and clot, not to mention vein preservation. Your doctor is the person to speak with about this.

One word of advice from someone who has been there: don't avoid a port just b/c it's scary and/or it makes CF seem more "real" in the form of a permanent device. Like everything else that is loud and visible about this disease (the VEST or oxygen someday or whatever), the port is designed to HELP your daughter and make things EASIER for her. I know it feels like you hit these milestones like a port or a g-tube or whatever and it's gross and makes you feel like your daughter is losing something to CF, but it's not at all like that. I was so worried about all that stuff when I got my port, and then I realized how much HAPPIER it made me not to have to get PICCs. How much more NORMAL I felt knowing that I could easily do home IVs without having to worry about getting a line placed. You even get to the point where you can access your port by yourself and it's really empowering. I love my line and was really sad when I lost it after 9 years and had to wait 3 months to get a new one placed. In the interim I had a PICC and it was really frustrating.

There are really good reasons to question getting a port and to talk to your doctor -- just please remember that it is only being suggested as another tool in your toolbox, so to speak. It's not in any way supposed to be limiting or a sign that CF has won yet another battle.

NYCLawGirl · Mar 13, 2010

I got my first port when I was 18. I was a competitive horseback rider and very very active, plus I was moving away to college. The port IN NO WAY slowed me down -- if anything you can do a lot more with a port than with PICC lines. The surgeon/radiologist will explain to you how to protect your port, but for the most part they are placed in spots where damage is unlikely b/c of rough-housing or athletics. And certainly it would be tough for anyone to "grab" the port and hurt it -- they're very small. Sometimes they are tender to the touch but I am now on my 2nd port and find that when it's not accessed I don't even feel it. Ever.
 
 As for infection/clot risk -- you have to weigh those. The risk of infection is greater with a port UNLESS you are getting PICC lines frequently and they are difficult to insert. Ports have to be accessed once a month to flush with heparin, but the infection risk is minimal so long as proper procedure is followed. It's not nearly as invasive a procedure to access a port as it is to get a PICC placed. In my case, I was getting IVs at least 2x a year and had bad veins -- the port was definitely the SAFER option for me in terms of risk of infection and clot, not to mention vein preservation. Your doctor is the person to speak with about this.
 
 One word of advice from someone who has been there: don't avoid a port just b/c it's scary and/or it makes CF seem more "real" in the form of a permanent device. Like everything else that is loud and visible about this disease (the VEST or oxygen someday or whatever), the port is designed to HELP your daughter and make things EASIER for her. I know it feels like you hit these milestones like a port or a g-tube or whatever and it's gross and makes you feel like your daughter is losing something to CF, but it's not at all like that. I was so worried about all that stuff when I got my port, and then I realized how much HAPPIER it made me not to have to get PICCs. How much more NORMAL I felt knowing that I could easily do home IVs without having to worry about getting a line placed. You even get to the point where you can access your port by yourself and it's really empowering. I love my line and was really sad when I lost it after 9 years and had to wait 3 months to get a new one placed. In the interim I had a PICC and it was really frustrating.
 
 There are really good reasons to question getting a port and to talk to your doctor -- just please remember that it is only being suggested as another tool in your toolbox, so to speak. It's not in any way supposed to be limiting or a sign that CF has won yet another battle.

theLostMiler · Mar 13, 2010

My dad also didnt want me to get it, b/c like Piper said, 'I couldnt be "normal" ever again' but its only made things easier. I have had my port only since September 2009 but the only time it hurts when not accessed is if it gets pushed around kinda violently, and sometimes when hit directly on it, but it isnt substantial as far as severity wise for myself.

I tried to think back to my cheerleading days and the only way I can see it maybe hurting her (obviously when not accessed) is if she does the backspot position, and if she has the port placed somewhere in her upper chest, just because the weight of the girl hits that area when you are backspotting sometimes. Remember there are options when it comes to where it is placed in the body too, so be sure to talk with the Doctor or Radiologist about that as well. In fact, I heard one girl even had the port placed somewhere down by her hip!
I think somewhere in the chest is best for doing cheerleading though personally, and know that you can get them on the underside of the breasts and so that could be an even better option b/c her breasts can take a lot of the "beating" of cheerleading possibly.

I never did tumbling much, but I cant imagine that affecting the port much.

Good Luck with things though, and like Piper said, it isnt the end of the world actually.

theLostMiler · Mar 13, 2010

My dad also didnt want me to get it, b/c like Piper said, 'I couldnt be "normal" ever again' but its only made things easier. I have had my port only since September 2009 but the only time it hurts when not accessed is if it gets pushed around kinda violently, and sometimes when hit directly on it, but it isnt substantial as far as severity wise for myself.

I tried to think back to my cheerleading days and the only way I can see it maybe hurting her (obviously when not accessed) is if she does the backspot position, and if she has the port placed somewhere in her upper chest, just because the weight of the girl hits that area when you are backspotting sometimes. Remember there are options when it comes to where it is placed in the body too, so be sure to talk with the Doctor or Radiologist about that as well. In fact, I heard one girl even had the port placed somewhere down by her hip!
I think somewhere in the chest is best for doing cheerleading though personally, and know that you can get them on the underside of the breasts and so that could be an even better option b/c her breasts can take a lot of the "beating" of cheerleading possibly.

I never did tumbling much, but I cant imagine that affecting the port much.

Good Luck with things though, and like Piper said, it isnt the end of the world actually.

theLostMiler · Mar 13, 2010

My dad also didnt want me to get it, b/c like Piper said, 'I couldnt be "normal" ever again' but its only made things easier. I have had my port only since September 2009 but the only time it hurts when not accessed is if it gets pushed around kinda violently, and sometimes when hit directly on it, but it isnt substantial as far as severity wise for myself.

I tried to think back to my cheerleading days and the only way I can see it maybe hurting her (obviously when not accessed) is if she does the backspot position, and if she has the port placed somewhere in her upper chest, just because the weight of the girl hits that area when you are backspotting sometimes. Remember there are options when it comes to where it is placed in the body too, so be sure to talk with the Doctor or Radiologist about that as well. In fact, I heard one girl even had the port placed somewhere down by her hip!
I think somewhere in the chest is best for doing cheerleading though personally, and know that you can get them on the underside of the breasts and so that could be an even better option b/c her breasts can take a lot of the "beating" of cheerleading possibly.

I never did tumbling much, but I cant imagine that affecting the port much.

Good Luck with things though, and like Piper said, it isnt the end of the world actually.

theLostMiler · Mar 13, 2010

My dad also didnt want me to get it, b/c like Piper said, 'I couldnt be "normal" ever again' but its only made things easier. I have had my port only since September 2009 but the only time it hurts when not accessed is if it gets pushed around kinda violently, and sometimes when hit directly on it, but it isnt substantial as far as severity wise for myself.

I tried to think back to my cheerleading days and the only way I can see it maybe hurting her (obviously when not accessed) is if she does the backspot position, and if she has the port placed somewhere in her upper chest, just because the weight of the girl hits that area when you are backspotting sometimes. Remember there are options when it comes to where it is placed in the body too, so be sure to talk with the Doctor or Radiologist about that as well. In fact, I heard one girl even had the port placed somewhere down by her hip!
I think somewhere in the chest is best for doing cheerleading though personally, and know that you can get them on the underside of the breasts and so that could be an even better option b/c her breasts can take a lot of the "beating" of cheerleading possibly.

I never did tumbling much, but I cant imagine that affecting the port much.

Good Luck with things though, and like Piper said, it isnt the end of the world actually.

theLostMiler · Mar 13, 2010

My dad also didnt want me to get it, b/c like Piper said, 'I couldnt be "normal" ever again' but its only made things easier. I have had my port only since September 2009 but the only time it hurts when not accessed is if it gets pushed around kinda violently, and sometimes when hit directly on it, but it isnt substantial as far as severity wise for myself.
 
 I tried to think back to my cheerleading days and the only way I can see it maybe hurting her (obviously when not accessed) is if she does the backspot position, and if she has the port placed somewhere in her upper chest, just because the weight of the girl hits that area when you are backspotting sometimes. Remember there are options when it comes to where it is placed in the body too, so be sure to talk with the Doctor or Radiologist about that as well. In fact, I heard one girl even had the port placed somewhere down by her hip!
 I think somewhere in the chest is best for doing cheerleading though personally, and know that you can get them on the underside of the breasts and so that could be an even better option b/c her breasts can take a lot of the "beating" of cheerleading possibly.
 
 I never did tumbling much, but I cant imagine that affecting the port much.
 
 Good Luck with things though, and like Piper said, it isnt the end of the world actually.

stephsumner · Apr 9, 2010

I had a dual power port placed in October of 2008 and I consider it my good luck charm. Since having it placed I have only needed iv anti's once, and that was only a week or so shy of the one year mark of placement. When I had mine placed they put me under, not sure what they gave me, but I was out. When I go for my monthly flush I "prep" the area 15 to 30 mins prior with a lidocane cream and I don't feel a thing.

Right after placement I was pretty self concious about it, but now I don't care what anyone thinks it makes things easier for me. I love it!

Stephanne
26 year old female with CF
Diagnosed at birth

stephsumner · Apr 9, 2010

I had a dual power port placed in October of 2008 and I consider it my good luck charm. Since having it placed I have only needed iv anti's once, and that was only a week or so shy of the one year mark of placement. When I had mine placed they put me under, not sure what they gave me, but I was out. When I go for my monthly flush I "prep" the area 15 to 30 mins prior with a lidocane cream and I don't feel a thing.

Right after placement I was pretty self concious about it, but now I don't care what anyone thinks it makes things easier for me. I love it!

Stephanne
26 year old female with CF
Diagnosed at birth

stephsumner · Apr 9, 2010

I had a dual power port placed in October of 2008 and I consider it my good luck charm. Since having it placed I have only needed iv anti's once, and that was only a week or so shy of the one year mark of placement. When I had mine placed they put me under, not sure what they gave me, but I was out. When I go for my monthly flush I "prep" the area 15 to 30 mins prior with a lidocane cream and I don't feel a thing.

Right after placement I was pretty self concious about it, but now I don't care what anyone thinks it makes things easier for me. I love it!

Stephanne
26 year old female with CF
Diagnosed at birth

stephsumner · Apr 9, 2010

I had a dual power port placed in October of 2008 and I consider it my good luck charm. Since having it placed I have only needed iv anti's once, and that was only a week or so shy of the one year mark of placement. When I had mine placed they put me under, not sure what they gave me, but I was out. When I go for my monthly flush I "prep" the area 15 to 30 mins prior with a lidocane cream and I don't feel a thing.

Right after placement I was pretty self concious about it, but now I don't care what anyone thinks it makes things easier for me. I love it!

Stephanne
26 year old female with CF
Diagnosed at birth

stephsumner · Apr 9, 2010

I had a dual power port placed in October of 2008 and I consider it my good luck charm. Since having it placed I have only needed iv anti's once, and that was only a week or so shy of the one year mark of placement. When I had mine placed they put me under, not sure what they gave me, but I was out. When I go for my monthly flush I "prep" the area 15 to 30 mins prior with a lidocane cream and I don't feel a thing.
 
 Right after placement I was pretty self concious about it, but now I don't care what anyone thinks it makes things easier for me. I love it!
 
 Stephanne
 26 year old female with CF
 Diagnosed at birth

crystalina0814 · Apr 9, 2010