Need some advice

[CHERIE4HARTS]

Hi out there-
it has been a long time since I visited this web site, and I am glad to be back. I am mom to Jacob 23 yrs w/cf. I have tried unsuccesfully to get him to log onto this site, as he is floundering and really doesn't want advice or help from his parents, esp mom. He just went back into hospital where he is living in WI and they ended up pulling his port. He went into septic shock last week when accessing the port to start IV meds. This is the third time this has happened, but NEVER so severely as last week. This port is 5 years old and when they put it in, they punctured his right lung, and he ended up on a chest tube for 3 days. He is now talking about NOT having a new port placed. I know he scared, but I am not sure how to advise him. We both talked about it, and he talked to Dr- maybe see if this will be good year for him and he can get by with pic lines! Anyway, just wanted to see if any adults have any port stories or info to help
Cherie

 

[CHERIE4HARTS]

Hi out there-
it has been a long time since I visited this web site, and I am glad to be back. I am mom to Jacob 23 yrs w/cf. I have tried unsuccesfully to get him to log onto this site, as he is floundering and really doesn't want advice or help from his parents, esp mom. He just went back into hospital where he is living in WI and they ended up pulling his port. He went into septic shock last week when accessing the port to start IV meds. This is the third time this has happened, but NEVER so severely as last week. This port is 5 years old and when they put it in, they punctured his right lung, and he ended up on a chest tube for 3 days. He is now talking about NOT having a new port placed. I know he scared, but I am not sure how to advise him. We both talked about it, and he talked to Dr- maybe see if this will be good year for him and he can get by with pic lines! Anyway, just wanted to see if any adults have any port stories or info to help
Cherie

 

[CHERIE4HARTS]

Hi out there-
it has been a long time since I visited this web site, and I am glad to be back. I am mom to Jacob 23 yrs w/cf. I have tried unsuccesfully to get him to log onto this site, as he is floundering and really doesn't want advice or help from his parents, esp mom. He just went back into hospital where he is living in WI and they ended up pulling his port. He went into septic shock last week when accessing the port to start IV meds. This is the third time this has happened, but NEVER so severely as last week. This port is 5 years old and when they put it in, they punctured his right lung, and he ended up on a chest tube for 3 days. He is now talking about NOT having a new port placed. I know he scared, but I am not sure how to advise him. We both talked about it, and he talked to Dr- maybe see if this will be good year for him and he can get by with pic lines! Anyway, just wanted to see if any adults have any port stories or info to help
Cherie

 

[Kelli]

Maybe he just needs a break from having a port and perhaps if he isn't be compliant with care, it may be best if he skips the port for now. I know this probably isn't very helpful but it's just my opinion.
I have a port and like it, I find it to be a plus when it comes to IV care and also I can hide it very easily (which I love).
Maybe he just needs some time to come to terms with having his surgery go so horribly wrong (punc. lung). And doesn't want to face it again.......yet.
Since it doesn't sound like he HAS to get another port, maybe just put it off for a while until he wants one (or at least won't mind having one placed).

Good luck with that!
KELLI
29 female, CF

 

[Kelli]

Maybe he just needs a break from having a port and perhaps if he isn't be compliant with care, it may be best if he skips the port for now. I know this probably isn't very helpful but it's just my opinion.
I have a port and like it, I find it to be a plus when it comes to IV care and also I can hide it very easily (which I love).
Maybe he just needs some time to come to terms with having his surgery go so horribly wrong (punc. lung). And doesn't want to face it again.......yet.
Since it doesn't sound like he HAS to get another port, maybe just put it off for a while until he wants one (or at least won't mind having one placed).

Good luck with that!
KELLI
29 female, CF

 

[Kelli]

Maybe he just needs a break from having a port and perhaps if he isn't be compliant with care, it may be best if he skips the port for now. I know this probably isn't very helpful but it's just my opinion.
I have a port and like it, I find it to be a plus when it comes to IV care and also I can hide it very easily (which I love).
Maybe he just needs some time to come to terms with having his surgery go so horribly wrong (punc. lung). And doesn't want to face it again.......yet.
Since it doesn't sound like he HAS to get another port, maybe just put it off for a while until he wants one (or at least won't mind having one placed).

Good luck with that!
KELLI
29 female, CF

 

[kybert]

i can understand wanting to have a break from a port. im seriously considering having a break if mine needs to go [im having trouble with mine at the moment].

 

[kybert]

i can understand wanting to have a break from a port. im seriously considering having a break if mine needs to go [im having trouble with mine at the moment].

 

[kybert]

i can understand wanting to have a break from a port. im seriously considering having a break if mine needs to go [im having trouble with mine at the moment].

 

[katyf13]

Mike has never had a port. He always gets picc lines. He is in the hospital every other month for IV's and they seem to work pretty well. He is able to keep them in for a few months at a time. I can't blame your son! That sounds horrible! Mike is already really selective about who can put in his picc lines, as he has had people botch them before.

 

[katyf13]

Mike has never had a port. He always gets picc lines. He is in the hospital every other month for IV's and they seem to work pretty well. He is able to keep them in for a few months at a time. I can't blame your son! That sounds horrible! Mike is already really selective about who can put in his picc lines, as he has had people botch them before.

 

[katyf13]

Mike has never had a port. He always gets picc lines. He is in the hospital every other month for IV's and they seem to work pretty well. He is able to keep them in for a few months at a time. I can't blame your son! That sounds horrible! Mike is already really selective about who can put in his picc lines, as he has had people botch them before.

 

[Diane]

It sounds like he does need a break from the port. I cant imagine how horrible that mishap must have been for him. I dont blame him for wanting to hold off on getting another. Hopefully he can go for a little while without the need for one.

 

[Diane]

It sounds like he does need a break from the port. I cant imagine how horrible that mishap must have been for him. I dont blame him for wanting to hold off on getting another. Hopefully he can go for a little while without the need for one.

 

[Diane]

It sounds like he does need a break from the port. I cant imagine how horrible that mishap must have been for him. I dont blame him for wanting to hold off on getting another. Hopefully he can go for a little while without the need for one.

 

[Lilith]

I've had my port for close to eight years now, and while I'm dreading the day that it has to be removed, I have never had such an ordeal with mine. I don't blame your son, however, for not wanting to take the risk again. I hope picc's will suffice for him!

Although I have to wonder...maybe getting a new port in a totally different part of his body might ease his mind? I don't know where he had his previous one, but mine is in my chest above my left breast and it seems like a great location. Just a thought...

 

[Lilith]

I've had my port for close to eight years now, and while I'm dreading the day that it has to be removed, I have never had such an ordeal with mine. I don't blame your son, however, for not wanting to take the risk again. I hope picc's will suffice for him!

Although I have to wonder...maybe getting a new port in a totally different part of his body might ease his mind? I don't know where he had his previous one, but mine is in my chest above my left breast and it seems like a great location. Just a thought...

 

[Lilith]

I've had my port for close to eight years now, and while I'm dreading the day that it has to be removed, I have never had such an ordeal with mine. I don't blame your son, however, for not wanting to take the risk again. I hope picc's will suffice for him!

Although I have to wonder...maybe getting a new port in a totally different part of his body might ease his mind? I don't know where he had his previous one, but mine is in my chest above my left breast and it seems like a great location. Just a thought...

 

[Uli]

My port is in my upper arm, so no way to hurt the lungs...<img src="i/expressions/face-icon-small-happy.gif" border="0">

Uli,44, Germany

 

[Uli]

My port is in my upper arm, so no way to hurt the lungs...<img src="i/expressions/face-icon-small-happy.gif" border="0">

Uli,44, Germany