port difficulty

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windex125

Guest
Get it done over, if you have the choice, as mentioned before I have mine 9yrs now. It is also above my breast under collarbone area. I think you will always be uncomfortable as that area is just too soft. Higher up may be alittle more noticable but so what? My scar is only abt 2" in length and has faded my buttons as I call them as it is a double mediport show through slightly. I've always had a blood return, but my nurse did tell me it is very possible sometimes you may not have one.So yr. port can be wrkg fine but I know we all look for he blood return to not worry abt clots. . But I wld suggest doing it over, long term you want to be comfortable. Also make sure you ask them where they are going to place it, under mild sedation you will do fine. Good luck. Pat-55/CF
 
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ej0820

New member
thanks all.

I think I will talk to my cf doc about getting a brand new one - having it completely redone and not just moved. I don't have an appt with him until after the first of the year. This is such a bummer, though...I was so excited for a port and it's given me so many issues.

Do you guys know where your lines go? Talking to the IV nurse, she had mentioned that they can direct the line to go into a vein that goes up into the neck (as opposed to in between my rib and collar bone). Are there are veins that are perhaps just above the collar bone?

Those of you with double lumen ports...why do you have them? Do you infuse two drugs at once with them? My infectious disease doc mentioned she would have rather had me get a double instead of a single, but the port was already placed so it was too late to really worry about it once she mentioned this. What would be the advantages of getting a double instead of a single??
 
E

ej0820

New member
thanks all.

I think I will talk to my cf doc about getting a brand new one - having it completely redone and not just moved. I don't have an appt with him until after the first of the year. This is such a bummer, though...I was so excited for a port and it's given me so many issues.

Do you guys know where your lines go? Talking to the IV nurse, she had mentioned that they can direct the line to go into a vein that goes up into the neck (as opposed to in between my rib and collar bone). Are there are veins that are perhaps just above the collar bone?

Those of you with double lumen ports...why do you have them? Do you infuse two drugs at once with them? My infectious disease doc mentioned she would have rather had me get a double instead of a single, but the port was already placed so it was too late to really worry about it once she mentioned this. What would be the advantages of getting a double instead of a single??
 
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ej0820

New member
thanks all.
<br />
<br />I think I will talk to my cf doc about getting a brand new one - having it completely redone and not just moved. I don't have an appt with him until after the first of the year. This is such a bummer, though...I was so excited for a port and it's given me so many issues.
<br />
<br />Do you guys know where your lines go? Talking to the IV nurse, she had mentioned that they can direct the line to go into a vein that goes up into the neck (as opposed to in between my rib and collar bone). Are there are veins that are perhaps just above the collar bone?
<br />
<br />Those of you with double lumen ports...why do you have them? Do you infuse two drugs at once with them? My infectious disease doc mentioned she would have rather had me get a double instead of a single, but the port was already placed so it was too late to really worry about it once she mentioned this. What would be the advantages of getting a double instead of a single??
 
W

windex125

Guest
Mine is through my jugular vein in my neck, so at this age, just looks age kicking in in the neck area. I had a double put in right from the beg. why I don't know? 9yrs ago I didn't ask alot of questions, and still not too many. I only infuse one med at a time, but the nurse alternates the neddles on a weekly basis from top to bottom. It works out better. I don't want to know numbers, or things that are not impacking my every day life, call me irresposnbile, but that's how I get by. My quailty of life on a day to day basis. I know what I have to do, to keep well so I jsut work at it, sure I slip up like anyone else on here, but I get back on track, as we all do. Wish you better luck with the new placement. Pat-55/CF
 
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windex125

Guest
Mine is through my jugular vein in my neck, so at this age, just looks age kicking in in the neck area. I had a double put in right from the beg. why I don't know? 9yrs ago I didn't ask alot of questions, and still not too many. I only infuse one med at a time, but the nurse alternates the neddles on a weekly basis from top to bottom. It works out better. I don't want to know numbers, or things that are not impacking my every day life, call me irresposnbile, but that's how I get by. My quailty of life on a day to day basis. I know what I have to do, to keep well so I jsut work at it, sure I slip up like anyone else on here, but I get back on track, as we all do. Wish you better luck with the new placement. Pat-55/CF
 
W

windex125

Guest
Mine is through my jugular vein in my neck, so at this age, just looks age kicking in in the neck area. I had a double put in right from the beg. why I don't know? 9yrs ago I didn't ask alot of questions, and still not too many. I only infuse one med at a time, but the nurse alternates the neddles on a weekly basis from top to bottom. It works out better. I don't want to know numbers, or things that are not impacking my every day life, call me irresposnbile, but that's how I get by. My quailty of life on a day to day basis. I know what I have to do, to keep well so I jsut work at it, sure I slip up like anyone else on here, but I get back on track, as we all do. Wish you better luck with the new placement. Pat-55/CF
 
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tarheel

Guest
The port is NOT supposed to be directly under the incision. My first port was much the same as yours- and stayed that way for about 6 months until it got infected. It got infected with yeast- but because of the way scar tissue forms it is basically unsanitary to have a port directly under the incision- scar tissue folds and creates lots of crevices for germs. This is especially a concern when near the armpits. But anyways, my port always hurt too. Talking to a different surgeon who did it the first time he was at a lack to explain everything the first surgeon did- it was just all not right (he took out the infected port and put in the new one) and when stuff like this happens the risk for infection goes way up. I would reccomend getting it taken out before you get a dangerous infection from it.
 
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tarheel

Guest
The port is NOT supposed to be directly under the incision. My first port was much the same as yours- and stayed that way for about 6 months until it got infected. It got infected with yeast- but because of the way scar tissue forms it is basically unsanitary to have a port directly under the incision- scar tissue folds and creates lots of crevices for germs. This is especially a concern when near the armpits. But anyways, my port always hurt too. Talking to a different surgeon who did it the first time he was at a lack to explain everything the first surgeon did- it was just all not right (he took out the infected port and put in the new one) and when stuff like this happens the risk for infection goes way up. I would reccomend getting it taken out before you get a dangerous infection from it.
 
T

tarheel

Guest
The port is NOT supposed to be directly under the incision. My first port was much the same as yours- and stayed that way for about 6 months until it got infected. It got infected with yeast- but because of the way scar tissue forms it is basically unsanitary to have a port directly under the incision- scar tissue folds and creates lots of crevices for germs. This is especially a concern when near the armpits. But anyways, my port always hurt too. Talking to a different surgeon who did it the first time he was at a lack to explain everything the first surgeon did- it was just all not right (he took out the infected port and put in the new one) and when stuff like this happens the risk for infection goes way up. I would reccomend getting it taken out before you get a dangerous infection from it.
 
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windex125

Guest
My double port sits directly under my incision? never had a infection as a matter fact as I sit typing I put my hand on it as I read the post.is it above or below I forget? You shd not be having and pain so I hope you have had the replacment done by now. Good luck Pat-55/CF
 
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windex125

Guest
My double port sits directly under my incision? never had a infection as a matter fact as I sit typing I put my hand on it as I read the post.is it above or below I forget? You shd not be having and pain so I hope you have had the replacment done by now. Good luck Pat-55/CF
 
W

windex125

Guest
My double port sits directly under my incision? never had a infection as a matter fact as I sit typing I put my hand on it as I read the post.is it above or below I forget? You shd not be having and pain so I hope you have had the replacment done by now. Good luck Pat-55/CF
 
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ej0820

New member
thanks for the concern!

I have not gotten it replaced. It's feeling better than it was and is working properly for the most part. Although, I'm still not used to where it is and it's pretty temperamental. I actually talked to my doc yesterday about it and he said all the long term IVs I'm on now for M. abscessus might only need to go until april. That being the case, once the IVs are done, he'll just have me get the port taken out and then replaced whenever the next time I need IVs is. If, for some reason, that I end up having to continue these IVs longer than april, then I will get it replaced then (probably on my spring break or long weekend from school). So...I'm sticking it out until april. My doc and PICU nurse (who changes my needle) have already spoken to another surgeon who now knows my case and is prepared to do whatever needs to happen. He's also discussed other anti-anxiety meds and such that he could use when the time comes.

thanks again for asking!
 
E

ej0820

New member
thanks for the concern!

I have not gotten it replaced. It's feeling better than it was and is working properly for the most part. Although, I'm still not used to where it is and it's pretty temperamental. I actually talked to my doc yesterday about it and he said all the long term IVs I'm on now for M. abscessus might only need to go until april. That being the case, once the IVs are done, he'll just have me get the port taken out and then replaced whenever the next time I need IVs is. If, for some reason, that I end up having to continue these IVs longer than april, then I will get it replaced then (probably on my spring break or long weekend from school). So...I'm sticking it out until april. My doc and PICU nurse (who changes my needle) have already spoken to another surgeon who now knows my case and is prepared to do whatever needs to happen. He's also discussed other anti-anxiety meds and such that he could use when the time comes.

thanks again for asking!
 
E

ej0820

New member
thanks for the concern!
<br />
<br />I have not gotten it replaced. It's feeling better than it was and is working properly for the most part. Although, I'm still not used to where it is and it's pretty temperamental. I actually talked to my doc yesterday about it and he said all the long term IVs I'm on now for M. abscessus might only need to go until april. That being the case, once the IVs are done, he'll just have me get the port taken out and then replaced whenever the next time I need IVs is. If, for some reason, that I end up having to continue these IVs longer than april, then I will get it replaced then (probably on my spring break or long weekend from school). So...I'm sticking it out until april. My doc and PICU nurse (who changes my needle) have already spoken to another surgeon who now knows my case and is prepared to do whatever needs to happen. He's also discussed other anti-anxiety meds and such that he could use when the time comes.
<br />
<br />thanks again for asking!
 
K

krisgabes

New member
Did your nurse ever say that your port is tilted? Your symptoms sound like some issues that I've had more recently. Sometimes I can't get a blood return, they had to use Activase on the line because they thought maybe it was clotted. Sometimes the flush is SO hard that it barely moves. I always seem to have it reaccessed. My nurse and the doctor who put it in said that my port is tilted and they have to move it around before they access it each time. Apparently the hard constant coughing and sleeping certain ways can push the line out of place and cause those kinks.

I feel so bad that yours is giving you such trouble! I think getting it re-placed is a good idea. I wouldn't be able to put up with that either. Good luck! I hope things work out! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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