port difficulty

E

ej0820

New member
hey all!!

I got my first port about two months ago. Right out of surgery I had some troubles with it. No one could access it, it was put in a spot I never expected (the surgeon didn't discuss where it was going to be placed with me...only that he could *try* for the left side like I asked), and upon the first few successful accesses, there was no blood return. There was talk of replacing it before I even got to use it. After several x-rays, visits with the surgeon post-op and a mediport dye test, it was finally accessed with a blood return. I've been using it since then but it's pretty tempermental. I've gone weeks with no blood return (at one point had TPA injected into it b/c they thought it was clotted) and I've also gone weeks with a blood return every day...

It was placed in my chest, right on top of my breast next to my arm pit. It looks like a third boob, lol. Because it's partially in my breast tissue, I can feel it being pulled when my breast moves. Taking off my bra makes it uncomfortable for several minutes until I get used to the feeling.

These are all pretty minor annoyances, but the thing is, it still hurts. Anytime I have a needle change, I cringe. Where my port is feels like a gigantic bruise (it looks ok though) and anytime it's accessed or deaccessed it hurts like someone is poking that gigantic bruise. I've been told that this should not happen two months after a placement...have any of you had anything like this?

The IV nurse that has been changing my needle for the last few weeks is concerned. She doesn't think it's the greatest spot for a port because of how close to breast tissue it is. She spoke to a dr in radiology who said if I wanted, I could have the port moved up higher, in a more secure place. This would be done with light sedation and pain drugs...that freaks me out. I could also have the thing completely taken out and redone.

I'm not sure what to do. It's working just fine but it's uncomfortable. The IV nurse suggested that since I'm having discomfort and my port is already so fussy that that may be an indication that bigger problems are in the future...she also said this same stuff could happen if I had it moved or got a brand new one (rightfully so). I'm on IVs right now and will be for several more months...should I invest in getting this taken care of or should I just continue to grin and bear it? Would you guys have it moved or completely replaced?? I'm puzzled!

Sorry this post is so long! Thanks for any input!
 
E

ej0820

New member
hey all!!

I got my first port about two months ago. Right out of surgery I had some troubles with it. No one could access it, it was put in a spot I never expected (the surgeon didn't discuss where it was going to be placed with me...only that he could *try* for the left side like I asked), and upon the first few successful accesses, there was no blood return. There was talk of replacing it before I even got to use it. After several x-rays, visits with the surgeon post-op and a mediport dye test, it was finally accessed with a blood return. I've been using it since then but it's pretty tempermental. I've gone weeks with no blood return (at one point had TPA injected into it b/c they thought it was clotted) and I've also gone weeks with a blood return every day...

It was placed in my chest, right on top of my breast next to my arm pit. It looks like a third boob, lol. Because it's partially in my breast tissue, I can feel it being pulled when my breast moves. Taking off my bra makes it uncomfortable for several minutes until I get used to the feeling.

These are all pretty minor annoyances, but the thing is, it still hurts. Anytime I have a needle change, I cringe. Where my port is feels like a gigantic bruise (it looks ok though) and anytime it's accessed or deaccessed it hurts like someone is poking that gigantic bruise. I've been told that this should not happen two months after a placement...have any of you had anything like this?

The IV nurse that has been changing my needle for the last few weeks is concerned. She doesn't think it's the greatest spot for a port because of how close to breast tissue it is. She spoke to a dr in radiology who said if I wanted, I could have the port moved up higher, in a more secure place. This would be done with light sedation and pain drugs...that freaks me out. I could also have the thing completely taken out and redone.

I'm not sure what to do. It's working just fine but it's uncomfortable. The IV nurse suggested that since I'm having discomfort and my port is already so fussy that that may be an indication that bigger problems are in the future...she also said this same stuff could happen if I had it moved or got a brand new one (rightfully so). I'm on IVs right now and will be for several more months...should I invest in getting this taken care of or should I just continue to grin and bear it? Would you guys have it moved or completely replaced?? I'm puzzled!

Sorry this post is so long! Thanks for any input!
 
E

ej0820

New member
hey all!!
<br />
<br />I got my first port about two months ago. Right out of surgery I had some troubles with it. No one could access it, it was put in a spot I never expected (the surgeon didn't discuss where it was going to be placed with me...only that he could *try* for the left side like I asked), and upon the first few successful accesses, there was no blood return. There was talk of replacing it before I even got to use it. After several x-rays, visits with the surgeon post-op and a mediport dye test, it was finally accessed with a blood return. I've been using it since then but it's pretty tempermental. I've gone weeks with no blood return (at one point had TPA injected into it b/c they thought it was clotted) and I've also gone weeks with a blood return every day...
<br />
<br />It was placed in my chest, right on top of my breast next to my arm pit. It looks like a third boob, lol. Because it's partially in my breast tissue, I can feel it being pulled when my breast moves. Taking off my bra makes it uncomfortable for several minutes until I get used to the feeling.
<br />
<br />These are all pretty minor annoyances, but the thing is, it still hurts. Anytime I have a needle change, I cringe. Where my port is feels like a gigantic bruise (it looks ok though) and anytime it's accessed or deaccessed it hurts like someone is poking that gigantic bruise. I've been told that this should not happen two months after a placement...have any of you had anything like this?
<br />
<br />The IV nurse that has been changing my needle for the last few weeks is concerned. She doesn't think it's the greatest spot for a port because of how close to breast tissue it is. She spoke to a dr in radiology who said if I wanted, I could have the port moved up higher, in a more secure place. This would be done with light sedation and pain drugs...that freaks me out. I could also have the thing completely taken out and redone.
<br />
<br />I'm not sure what to do. It's working just fine but it's uncomfortable. The IV nurse suggested that since I'm having discomfort and my port is already so fussy that that may be an indication that bigger problems are in the future...she also said this same stuff could happen if I had it moved or got a brand new one (rightfully so). I'm on IVs right now and will be for several more months...should I invest in getting this taken care of or should I just continue to grin and bear it? Would you guys have it moved or completely replaced?? I'm puzzled!
<br />
<br />Sorry this post is so long! Thanks for any input!
 
M

mag6125

New member
Hey Erin,

Sorry you're having so much trouble. Now when you say you're not getting blood return is it still flushing ok? I know with mine when its first accessed I don't get blood return until I've had a couple doses of meds go through it then I get blood return fine. This past week however I was in the hospital and for three days was on constant iv fluids, during that time they couldn't get blood return at all, but after being off fluids and just on meds for a day we got blood again. Sometimes they are just picky, and I know different docs/nurses/surgeons will say different things regarding blood return. I've heard some say if it doesn't get return everytime regardless of how it flushes that it should be replaced and others say that its fine as long as it flushes with no problem and they basically leave it up to the patient what they want to do about it.

As far as location goes that doesn't sound very comfortable to me and I can't believe your surgeon didn't explain where he was planning on putting it. I had a nurse tell me yesterday they have a couple patients who need to have their's replaced because its too hard to find and access in the breast tissue. I was lucky enough to have an amazing surgeon who worked with me and placed my port about an inch below my breast, when it isn't accessed and I'm a healthy weight you can't even see it and its very comfortable. My scar is right along my bra line and the only time anyone can even see it is if I'm wearing a bathing suit.

My incision area was rather tender for about 8 weeks afterward until I developed some scar tissue. I wasn't able to wear a bra for a couple of weeks but after that it was just a slight discomfort until completely healed. If things don't start working out and you opt to get a new one placed really talk to your surgeon about your placement options, I got a second opinion because the first surgeon told me there was no way he'd place the port where I wanted, and then I met his partner who was much kinder and more understanding and I've had no problems at all with it since!! If you want to know anything else feel free to pm me!
 
M

mag6125

New member
Hey Erin,

Sorry you're having so much trouble. Now when you say you're not getting blood return is it still flushing ok? I know with mine when its first accessed I don't get blood return until I've had a couple doses of meds go through it then I get blood return fine. This past week however I was in the hospital and for three days was on constant iv fluids, during that time they couldn't get blood return at all, but after being off fluids and just on meds for a day we got blood again. Sometimes they are just picky, and I know different docs/nurses/surgeons will say different things regarding blood return. I've heard some say if it doesn't get return everytime regardless of how it flushes that it should be replaced and others say that its fine as long as it flushes with no problem and they basically leave it up to the patient what they want to do about it.

As far as location goes that doesn't sound very comfortable to me and I can't believe your surgeon didn't explain where he was planning on putting it. I had a nurse tell me yesterday they have a couple patients who need to have their's replaced because its too hard to find and access in the breast tissue. I was lucky enough to have an amazing surgeon who worked with me and placed my port about an inch below my breast, when it isn't accessed and I'm a healthy weight you can't even see it and its very comfortable. My scar is right along my bra line and the only time anyone can even see it is if I'm wearing a bathing suit.

My incision area was rather tender for about 8 weeks afterward until I developed some scar tissue. I wasn't able to wear a bra for a couple of weeks but after that it was just a slight discomfort until completely healed. If things don't start working out and you opt to get a new one placed really talk to your surgeon about your placement options, I got a second opinion because the first surgeon told me there was no way he'd place the port where I wanted, and then I met his partner who was much kinder and more understanding and I've had no problems at all with it since!! If you want to know anything else feel free to pm me!
 
M

mag6125

New member
Hey Erin,
<br />
<br />Sorry you're having so much trouble. Now when you say you're not getting blood return is it still flushing ok? I know with mine when its first accessed I don't get blood return until I've had a couple doses of meds go through it then I get blood return fine. This past week however I was in the hospital and for three days was on constant iv fluids, during that time they couldn't get blood return at all, but after being off fluids and just on meds for a day we got blood again. Sometimes they are just picky, and I know different docs/nurses/surgeons will say different things regarding blood return. I've heard some say if it doesn't get return everytime regardless of how it flushes that it should be replaced and others say that its fine as long as it flushes with no problem and they basically leave it up to the patient what they want to do about it.
<br />
<br />As far as location goes that doesn't sound very comfortable to me and I can't believe your surgeon didn't explain where he was planning on putting it. I had a nurse tell me yesterday they have a couple patients who need to have their's replaced because its too hard to find and access in the breast tissue. I was lucky enough to have an amazing surgeon who worked with me and placed my port about an inch below my breast, when it isn't accessed and I'm a healthy weight you can't even see it and its very comfortable. My scar is right along my bra line and the only time anyone can even see it is if I'm wearing a bathing suit.
<br />
<br />My incision area was rather tender for about 8 weeks afterward until I developed some scar tissue. I wasn't able to wear a bra for a couple of weeks but after that it was just a slight discomfort until completely healed. If things don't start working out and you opt to get a new one placed really talk to your surgeon about your placement options, I got a second opinion because the first surgeon told me there was no way he'd place the port where I wanted, and then I met his partner who was much kinder and more understanding and I've had no problems at all with it since!! If you want to know anything else feel free to pm me!
 
E

ej0820

New member
thanks...I'm not sure what I want to do. It really is quite uncomfortable - for so many reasons! The place it's in isn't very conducive for dressings. When my arm moves, tape comes unstuck. When my armpit sweats, tape comes unstuck, etc. Let me ask, where exactly is your port in relation to your incision? My port seems to be literally UNDERNEATH the incision, which I think is what made it so hard to access right after I had it placed. Something tells me it's not supposed to be like that...most I've heard on here, I've gathered that most peoples' ports are below or to the right/left of the incision.

It does flush just fine, blood return or not, which is why I'm not quite sure what to do with all of this.

Another reason the IV nurse is concerned is because it seems the catheter goes in the vein that is between my clavical and first rib. Whenever I move my arm or shoulder in certain positions, those bones come together and the line tends to kink (total pain in the butt when I'm infusing...I'll infuse for a good 15 mins before I realize nothings infusing because my shoulder needs to move). Can't kinks make the catheter more prone to breaking?
 
E

ej0820

New member
thanks...I'm not sure what I want to do. It really is quite uncomfortable - for so many reasons! The place it's in isn't very conducive for dressings. When my arm moves, tape comes unstuck. When my armpit sweats, tape comes unstuck, etc. Let me ask, where exactly is your port in relation to your incision? My port seems to be literally UNDERNEATH the incision, which I think is what made it so hard to access right after I had it placed. Something tells me it's not supposed to be like that...most I've heard on here, I've gathered that most peoples' ports are below or to the right/left of the incision.

It does flush just fine, blood return or not, which is why I'm not quite sure what to do with all of this.

Another reason the IV nurse is concerned is because it seems the catheter goes in the vein that is between my clavical and first rib. Whenever I move my arm or shoulder in certain positions, those bones come together and the line tends to kink (total pain in the butt when I'm infusing...I'll infuse for a good 15 mins before I realize nothings infusing because my shoulder needs to move). Can't kinks make the catheter more prone to breaking?
 
E

ej0820

New member
thanks...I'm not sure what I want to do. It really is quite uncomfortable - for so many reasons! The place it's in isn't very conducive for dressings. When my arm moves, tape comes unstuck. When my armpit sweats, tape comes unstuck, etc. Let me ask, where exactly is your port in relation to your incision? My port seems to be literally UNDERNEATH the incision, which I think is what made it so hard to access right after I had it placed. Something tells me it's not supposed to be like that...most I've heard on here, I've gathered that most peoples' ports are below or to the right/left of the incision.
<br />
<br />It does flush just fine, blood return or not, which is why I'm not quite sure what to do with all of this.
<br />
<br />Another reason the IV nurse is concerned is because it seems the catheter goes in the vein that is between my clavical and first rib. Whenever I move my arm or shoulder in certain positions, those bones come together and the line tends to kink (total pain in the butt when I'm infusing...I'll infuse for a good 15 mins before I realize nothings infusing because my shoulder needs to move). Can't kinks make the catheter more prone to breaking?
 
M

mag6125

New member
Wow that does sound like an odd place for it and I can see how the kinking would be a concern, I'm not sure if it makes it more prone to breaking but it can definitely mess with your infusions. That would make me consider having a new one placed and maybe that has something to do with why you have so much trouble getting blood return. My port is just under my incision, but I can tell you it has moved down some since it was placed,it was more directly under the incision at first. I've been told its normal for it to move a little bit like that depeding on the fat around the area and how the scar tissue forms. Having it accessed right after placement can definitely be uncomfortable, I had mine accessed for the first time a week after it was placed and I had them use Emla cream to numb it just in case. Ever since its healed though its just like a tiny little prick, less than a shot.
 
M

mag6125

New member
Wow that does sound like an odd place for it and I can see how the kinking would be a concern, I'm not sure if it makes it more prone to breaking but it can definitely mess with your infusions. That would make me consider having a new one placed and maybe that has something to do with why you have so much trouble getting blood return. My port is just under my incision, but I can tell you it has moved down some since it was placed,it was more directly under the incision at first. I've been told its normal for it to move a little bit like that depeding on the fat around the area and how the scar tissue forms. Having it accessed right after placement can definitely be uncomfortable, I had mine accessed for the first time a week after it was placed and I had them use Emla cream to numb it just in case. Ever since its healed though its just like a tiny little prick, less than a shot.
 
M

mag6125

New member
Wow that does sound like an odd place for it and I can see how the kinking would be a concern, I'm not sure if it makes it more prone to breaking but it can definitely mess with your infusions. That would make me consider having a new one placed and maybe that has something to do with why you have so much trouble getting blood return. My port is just under my incision, but I can tell you it has moved down some since it was placed,it was more directly under the incision at first. I've been told its normal for it to move a little bit like that depeding on the fat around the area and how the scar tissue forms. Having it accessed right after placement can definitely be uncomfortable, I had mine accessed for the first time a week after it was placed and I had them use Emla cream to numb it just in case. Ever since its healed though its just like a tiny little prick, less than a shot.
 
L

lilywing

New member
Hey Erin
I'm so sorry you are still having port problems, and painful ones on top of it.
My personal feeling is that your port shouldn't be hurting you this much. It sounds like it's in a very awkward spot and it moves around enough to cause discomfort and difficulty. Have you discussed with your doctor?
If it was me, I would attempt to get a new port placed in a better location, and ideally enjoy a happy, healthy, user-friendly, and pain-free port for the next few years.
And I just want to add (and I know I've said it before blah blah blah lol) that when I had my port placed 2 years ago, under conscious sedation, it was a breeze. Prior to the procedure, I was terrified at the concept of conscious sedation, and was convinced that things would go terribly wrong and that I would die on the table (of a self-induced anxiety attack, or otherwise). But it was a piece of cake, and I proved to be a little stronger than I thought I was. If I can do it, I know you can too <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lilywing

New member
Hey Erin
I'm so sorry you are still having port problems, and painful ones on top of it.
My personal feeling is that your port shouldn't be hurting you this much. It sounds like it's in a very awkward spot and it moves around enough to cause discomfort and difficulty. Have you discussed with your doctor?
If it was me, I would attempt to get a new port placed in a better location, and ideally enjoy a happy, healthy, user-friendly, and pain-free port for the next few years.
And I just want to add (and I know I've said it before blah blah blah lol) that when I had my port placed 2 years ago, under conscious sedation, it was a breeze. Prior to the procedure, I was terrified at the concept of conscious sedation, and was convinced that things would go terribly wrong and that I would die on the table (of a self-induced anxiety attack, or otherwise). But it was a piece of cake, and I proved to be a little stronger than I thought I was. If I can do it, I know you can too <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lilywing

New member
Hey Erin
<br />I'm so sorry you are still having port problems, and painful ones on top of it.
<br />My personal feeling is that your port shouldn't be hurting you this much. It sounds like it's in a very awkward spot and it moves around enough to cause discomfort and difficulty. Have you discussed with your doctor?
<br /> If it was me, I would attempt to get a new port placed in a better location, and ideally enjoy a happy, healthy, user-friendly, and pain-free port for the next few years.
<br />And I just want to add (and I know I've said it before blah blah blah lol) that when I had my port placed 2 years ago, under conscious sedation, it was a breeze. Prior to the procedure, I was terrified at the concept of conscious sedation, and was convinced that things would go terribly wrong and that I would die on the table (of a self-induced anxiety attack, or otherwise). But it was a piece of cake, and I proved to be a little stronger than I thought I was. If I can do it, I know you can too <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
wow, i would get it replaced, just the annoyances you are having makes it useless to get a port in the first place! My port is above my scar, like he inserted up into the muscle area.... but the scar has grown a lot so it covers like the bottom half of the port, which is fine b/c then I cant even feel the needle go in if they put it through the scar tissue. I never need or use emla cream and I was accessed right after it was placed, well in surgery and the next day a a new needle was placed, I think the pokin feeling gets a bit to used to huh, at first it was like a bee sting, but usally its pretty quick so it doesnt bother me.

I have mine in my right side above the boob, so its more noticeable, but I dont have to worry about it moving around a lot on a nurse trying to access me. I like it there, is kinda towards the center so my bra strap doesnt hit it directly and kinda irritate it at all.

The kinking this would be so annoying, and to me a bit scary like you said, it makes sense to worry about breaking if its being kinked a lot....

overall, I would get it replaced.

Is conscious sedation where you are like twilighty? like at the dentist? when I got mine done they said only initially local anasthesia but I got versaid and so I was kinda out but not fully out, is that onscious sedation? I dont remember a thing about my placement. I wasnt even sore to much, only took ibuprofen afterwards no vikatin.
 
T

theLostMiler

New member
wow, i would get it replaced, just the annoyances you are having makes it useless to get a port in the first place! My port is above my scar, like he inserted up into the muscle area.... but the scar has grown a lot so it covers like the bottom half of the port, which is fine b/c then I cant even feel the needle go in if they put it through the scar tissue. I never need or use emla cream and I was accessed right after it was placed, well in surgery and the next day a a new needle was placed, I think the pokin feeling gets a bit to used to huh, at first it was like a bee sting, but usally its pretty quick so it doesnt bother me.

I have mine in my right side above the boob, so its more noticeable, but I dont have to worry about it moving around a lot on a nurse trying to access me. I like it there, is kinda towards the center so my bra strap doesnt hit it directly and kinda irritate it at all.

The kinking this would be so annoying, and to me a bit scary like you said, it makes sense to worry about breaking if its being kinked a lot....

overall, I would get it replaced.

Is conscious sedation where you are like twilighty? like at the dentist? when I got mine done they said only initially local anasthesia but I got versaid and so I was kinda out but not fully out, is that onscious sedation? I dont remember a thing about my placement. I wasnt even sore to much, only took ibuprofen afterwards no vikatin.
 
T

theLostMiler

New member
wow, i would get it replaced, just the annoyances you are having makes it useless to get a port in the first place! My port is above my scar, like he inserted up into the muscle area.... but the scar has grown a lot so it covers like the bottom half of the port, which is fine b/c then I cant even feel the needle go in if they put it through the scar tissue. I never need or use emla cream and I was accessed right after it was placed, well in surgery and the next day a a new needle was placed, I think the pokin feeling gets a bit to used to huh, at first it was like a bee sting, but usally its pretty quick so it doesnt bother me.
<br />
<br />I have mine in my right side above the boob, so its more noticeable, but I dont have to worry about it moving around a lot on a nurse trying to access me. I like it there, is kinda towards the center so my bra strap doesnt hit it directly and kinda irritate it at all.
<br />
<br />The kinking this would be so annoying, and to me a bit scary like you said, it makes sense to worry about breaking if its being kinked a lot....
<br />
<br />overall, I would get it replaced.
<br />
<br />Is conscious sedation where you are like twilighty? like at the dentist? when I got mine done they said only initially local anasthesia but I got versaid and so I was kinda out but not fully out, is that onscious sedation? I dont remember a thing about my placement. I wasnt even sore to much, only took ibuprofen afterwards no vikatin.
 
W

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
 
W

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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