After 2.5 hours of trying every vein in both of my arms, the IV team at my hospital has stated that they are unable to place a PICC line in me. It looks like I will be getting a port. Please tell me about your experience getting one, how it feels/looks afterwards and upkeep. Thanks!
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- Thread starter Jeana
- Start date
After 2.5 hours of trying every vein in both of my arms, the IV team at my hospital has stated that they are unable to place a PICC line in me. It looks like I will be getting a port. Please tell me about your experience getting one, how it feels/looks afterwards and upkeep. Thanks!
<P>Some specific questions that I have:</P>
<P></P>
<P>1. Has anyone gotten a tunneled catheter instead of a port and why might a doctor be against ports?</P>
<P></P>
<P>2. Is accessing your port painful?</P>
<P></P>
<P>3. Do you need to cover your port each time that you shower?</P>
<P></P>
<P></P>
<P></P>
<P>1. Has anyone gotten a tunneled catheter instead of a port and why might a doctor be against ports?</P>
<P></P>
<P>2. Is accessing your port painful?</P>
<P></P>
<P>3. Do you need to cover your port each time that you shower?</P>
<P></P>
<P></P>
<P>Some specific questions that I have:</P>
<P></P>
<P>1. Has anyone gotten a tunneled catheter instead of a port and why might a doctor be against ports?</P>
<P></P>
<P>2. Is accessing your port painful?</P>
<P></P>
<P>3. Do you need to cover your port each time that you shower?</P>
<P></P>
<P></P>
<P></P>
<P>1. Has anyone gotten a tunneled catheter instead of a port and why might a doctor be against ports?</P>
<P></P>
<P>2. Is accessing your port painful?</P>
<P></P>
<P>3. Do you need to cover your port each time that you shower?</P>
<P></P>
<P></P>
crystalina0814
New member
I was dead set against a port. Partially from being scared, the other was denial, or thinking it meant I was giving up or getting worse. I got my port about 2 years ago. It was tender for the first few weeks. After that, I didn't even realize it was there until it was accessed. Mine is in my upper right chest- closer to my boob. You only need to cover it in the shower when it is accessed- or when you are on IVs. I de-access myself and restart it while on IVs- so I don't need to cover it. I feel more in control. I love it! It really isn't any more painful accessing it then having blood drawn....and doesn't even compare to the gruesome chore of getting and digging around for a vein the PICC way. I would do it over and over again and would have gotten it sooner if I would have know how much more freedom and how much easier a port was. I can almost guarantee that you will feel the same way. I also don't hesitate to go on IVs anymore and my health is reflecting how much more proactive I am now. It does not limit any of your activity such as working out, ect. even when accessed. You just have to flush it monthly- which is nothing, I do it myslef at home in less than 10 minutes. You can even have all your blood drawn from your port- keeps from getting extra pokes!!! All in all, I love mine, gives me more freedom, I am no longer in tears over getting a PICC or not finding a vein, and I can even start IVs myself at home now. Love it. Good luck!!
crystalina0814
New member
I was dead set against a port. Partially from being scared, the other was denial, or thinking it meant I was giving up or getting worse. I got my port about 2 years ago. It was tender for the first few weeks. After that, I didn't even realize it was there until it was accessed. Mine is in my upper right chest- closer to my boob. You only need to cover it in the shower when it is accessed- or when you are on IVs. I de-access myself and restart it while on IVs- so I don't need to cover it. I feel more in control. I love it! It really isn't any more painful accessing it then having blood drawn....and doesn't even compare to the gruesome chore of getting and digging around for a vein the PICC way. I would do it over and over again and would have gotten it sooner if I would have know how much more freedom and how much easier a port was. I can almost guarantee that you will feel the same way. I also don't hesitate to go on IVs anymore and my health is reflecting how much more proactive I am now. It does not limit any of your activity such as working out, ect. even when accessed. You just have to flush it monthly- which is nothing, I do it myslef at home in less than 10 minutes. You can even have all your blood drawn from your port- keeps from getting extra pokes!!! All in all, I love mine, gives me more freedom, I am no longer in tears over getting a PICC or not finding a vein, and I can even start IVs myself at home now. Love it. Good luck!!
Hi Jeana, Lots of changes going on for your right now. I think this one will be one that you will be very happy you did. The independence is amazing with a port. I don't usually go in to the doctors to even start my IVs. Instead I go after two weeks to ensure I am back to baseline. Care for a port is not difficult. I will say though the sooner you learn to access it the better if you are up for it. THis way you can do dressing changes when it's convenient for you. Also you don't have to deal with annoying (and germy!) nurses in your home. I am always curious what other diseases they treat and it ends up causing me anxiety. Like one nurse had just come from someone's houses with mad cow disease. I'm sure it's not contagious but still. The port will include a tunneled catheter to your heart. Most typically they are placed just below the clavical and then the catheter actually goes over the clavical bone and into the subclavian vein. Mine is placed lower in my breast tissue. While this helped with concealing it (ie. it doesn't show when I have even a spaghetti strap shirt on) I feel it may be more sensitive tissue. The first half dozen times it was poked it hurt I won't lie. Some doctors (oncologists, never heard of a cf dr being against them) are worried about infection. The thing is as we read on here all the time, PICCS come with their host of issues too. Because cfers are so diligent with or extensive care routines I think we are a perfect candidate for a port. When your port is accessed you will need to cover it before showering. Sometimes though you can coordinate it with a dressing change and deaccess for a number of hours before reaccessing. A perfect time to shower! You will need to flush it every 4-6 weeks (and I've heard of people going much longer!) but it really is totally worth it. I think one year down the road you'll be so glad you have it. I have a single lumen regular port. You may hear about double lumen (how many of your meds though can you really infuse at the same time?). And remember double catheter means you'll have to flush both sides each time you access. Another type of port is a power port. This is good because you can put contrast in it. Again, how often do you need contrast I ask? From what I've heard power ports are smaller and more likely to clog. A pediatric port might be tempting for making it less noticeable but they can be difficult to hit (access). You'll want to be able to access that puppy on the first try.Any more q's just let me know.
Hi Jeana, Lots of changes going on for your right now. I think this one will be one that you will be very happy you did. The independence is amazing with a port. I don't usually go in to the doctors to even start my IVs. Instead I go after two weeks to ensure I am back to baseline. Care for a port is not difficult. I will say though the sooner you learn to access it the better if you are up for it. THis way you can do dressing changes when it's convenient for you. Also you don't have to deal with annoying (and germy!) nurses in your home. I am always curious what other diseases they treat and it ends up causing me anxiety. Like one nurse had just come from someone's houses with mad cow disease. I'm sure it's not contagious but still. The port will include a tunneled catheter to your heart. Most typically they are placed just below the clavical and then the catheter actually goes over the clavical bone and into the subclavian vein. Mine is placed lower in my breast tissue. While this helped with concealing it (ie. it doesn't show when I have even a spaghetti strap shirt on) I feel it may be more sensitive tissue. The first half dozen times it was poked it hurt I won't lie. Some doctors (oncologists, never heard of a cf dr being against them) are worried about infection. The thing is as we read on here all the time, PICCS come with their host of issues too. Because cfers are so diligent with or extensive care routines I think we are a perfect candidate for a port. When your port is accessed you will need to cover it before showering. Sometimes though you can coordinate it with a dressing change and deaccess for a number of hours before reaccessing. A perfect time to shower! You will need to flush it every 4-6 weeks (and I've heard of people going much longer!) but it really is totally worth it. I think one year down the road you'll be so glad you have it. I have a single lumen regular port. You may hear about double lumen (how many of your meds though can you really infuse at the same time?). And remember double catheter means you'll have to flush both sides each time you access. Another type of port is a power port. This is good because you can put contrast in it. Again, how often do you need contrast I ask? From what I've heard power ports are smaller and more likely to clog. A pediatric port might be tempting for making it less noticeable but they can be difficult to hit (access). You'll want to be able to access that puppy on the first try.Any more q's just let me know.
M
MCGrad2006
Guest
<P>I was also in the same boat as you regarding a port. I was having lots of trouble with PICCs and just generally miserable when on IV's. I had spoken with my doctor about it a few years back and he wanted to hold off because the risk of infection...yada yada...and I also at that point was not on IV's very often (once a year). In the last year I have been on IV's three times and had trouble placing the PICC and also had a blood clot once...and then the next time, PICC stopped working (either it moved or was placed wrong) a week before I was supposed to be done with IV's. At that point, after a weekend in the emergency to make sure I had no clot again, I mentioned to my doctor about a port and he was thrilled that I was the one to mention (that he didn't have to tell me to do it). </P>
<P></P>
<P>I got the port three weeks later and am already happy to have done it. I had it done on a Friday and probably could have gone back to work Tuesday. I only needed motrin for the pain and I was almost pain free within a few days. Every once in a while, I would get twinges of searing pain across my scar, but that only lasted maybe a month. I don't feel a thing anymore. I was semi-awake for the procedure, not completely out and that was the bestway it could have been done. I recovered quickly and besides being a bit tired I felt great. I don't prefer to access myself. For one, I don't think I would be able to see at the angle it is, and for two...I don't like needles. HAHA. I have had a nurse come three times now to flush and it doesn't even hurt. I can't feel a thing. It is placed in the very top of my breast tissue. It is a bit noticable, but nothing bad. It is a power port, which is triangular shape. </P>
<P></P>
<P>And so far I have not had to use it, so YAY. So I can't really tell you much about that part. Good luck!!</P>
<P></P>
<P>I got the port three weeks later and am already happy to have done it. I had it done on a Friday and probably could have gone back to work Tuesday. I only needed motrin for the pain and I was almost pain free within a few days. Every once in a while, I would get twinges of searing pain across my scar, but that only lasted maybe a month. I don't feel a thing anymore. I was semi-awake for the procedure, not completely out and that was the bestway it could have been done. I recovered quickly and besides being a bit tired I felt great. I don't prefer to access myself. For one, I don't think I would be able to see at the angle it is, and for two...I don't like needles. HAHA. I have had a nurse come three times now to flush and it doesn't even hurt. I can't feel a thing. It is placed in the very top of my breast tissue. It is a bit noticable, but nothing bad. It is a power port, which is triangular shape. </P>
<P></P>
<P>And so far I have not had to use it, so YAY. So I can't really tell you much about that part. Good luck!!</P>
M
MCGrad2006
Guest
<P>I was also in the same boat as you regarding a port. I was having lots of trouble with PICCs and just generally miserable when on IV's. I had spoken with my doctor about it a few years back and he wanted to hold off because the risk of infection...yada yada...and I also at that point was not on IV's very often (once a year). In the last year I have been on IV's three times and had trouble placing the PICC and also had a blood clot once...and then the next time, PICC stopped working (either it moved or was placed wrong) a week before I was supposed to be done with IV's. At that point, after a weekend in the emergency to make sure I had no clot again, I mentioned to my doctor about a port and he was thrilled that I was the one to mention (that he didn't have to tell me to do it). </P>
<P></P>
<P>I got the port three weeks later and am already happy to have done it. I had it done on a Friday and probably could have gone back to work Tuesday. I only needed motrin for the pain and I was almost pain free within a few days. Every once in a while, I would get twinges of searing pain across my scar, but that only lasted maybe a month. I don't feel a thing anymore. I was semi-awake for the procedure, not completely out and that was the bestway it could have been done. I recovered quickly and besides being a bit tired I felt great. I don't prefer to access myself. For one, I don't think I would be able to see at the angle it is, and for two...I don't like needles. HAHA. I have had a nurse come three times now to flush and it doesn't even hurt. I can't feel a thing. It is placed in the very top of my breast tissue. It is a bit noticable, but nothing bad. It is a power port, which is triangular shape. </P>
<P></P>
<P>And so far I have not had to use it, so YAY. So I can't really tell you much about that part. Good luck!!</P>
<P></P>
<P>I got the port three weeks later and am already happy to have done it. I had it done on a Friday and probably could have gone back to work Tuesday. I only needed motrin for the pain and I was almost pain free within a few days. Every once in a while, I would get twinges of searing pain across my scar, but that only lasted maybe a month. I don't feel a thing anymore. I was semi-awake for the procedure, not completely out and that was the bestway it could have been done. I recovered quickly and besides being a bit tired I felt great. I don't prefer to access myself. For one, I don't think I would be able to see at the angle it is, and for two...I don't like needles. HAHA. I have had a nurse come three times now to flush and it doesn't even hurt. I can't feel a thing. It is placed in the very top of my breast tissue. It is a bit noticable, but nothing bad. It is a power port, which is triangular shape. </P>
<P></P>
<P>And so far I have not had to use it, so YAY. So I can't really tell you much about that part. Good luck!!</P>
Hi Jeana,<br> I have had 3 ports.. The first two caused me to have DVT (blood clots) Having said that, I love my port !! My body just doesnt like having a foreign object in it.. So now I do one shot a day of blood thinner & so far so good , Ty God ! MOST ppl dont have this problem so dont let it freak you ..<br>As far as it being painful when getting accessed , I sometimes put Emlia cream on to numb it.. If it is accessed you do have to cover it like you would with a picc line. What I would also say is if you are going to have a home health care nurse access you for monthly maintenance find one that you know is good & request him/her all the time !! Know your access needle size so if the nurse isnt sure you know.. Make sure anyone that comes in contact w/ you & your port uses proper precautions ..<br>I know it is scary , but it is so worth it ! Let us know how it goes.<br><3 joni
Hi Jeana,<br> I have had 3 ports.. The first two caused me to have DVT (blood clots) Having said that, I love my port !! My body just doesnt like having a foreign object in it.. So now I do one shot a day of blood thinner & so far so good , Ty God ! MOST ppl dont have this problem so dont let it freak you ..<br>As far as it being painful when getting accessed , I sometimes put Emlia cream on to numb it.. If it is accessed you do have to cover it like you would with a picc line. What I would also say is if you are going to have a home health care nurse access you for monthly maintenance find one that you know is good & request him/her all the time !! Know your access needle size so if the nurse isnt sure you know.. Make sure anyone that comes in contact w/ you & your port uses proper precautions ..<br>I know it is scary , but it is so worth it ! Let us know how it goes.<br><3 joni
Honestly its the best peace of aftermarket parts I've ever ended up with, no need to covor it in the shower when it isn't accessed, and honestly its about like taking a soda bottle cap and taping it to your skin for size, infact I think the bottle cape might be bigger. It can hurt some when accessed but when doing so its normaly over with like snapping a finger, last few times I've not even noticed when somebody got into it.
Honestly its the best peace of aftermarket parts I've ever ended up with, no need to covor it in the shower when it isn't accessed, and honestly its about like taking a soda bottle cap and taping it to your skin for size, infact I think the bottle cape might be bigger. It can hurt some when accessed but when doing so its normaly over with like snapping a finger, last few times I've not even noticed when somebody got into it.
lilmac1177
New member
<font face="georgia" color="#0066ff">i am also entering the same boat many of you have stated you're in or have been in ... PICCs are getting harder to place (last one in November they used a "third choice vein") and they're starting to have issue w/ clotting very easily! i have been kicking around the idea of finally getting passed the fear, the denial and all the reasons i thought i should put it off...even talked to the RN w/ my CF team at my last clinic visit and she seemed to agree that if i'm beginning to have issues w/ PICC then a port would be a good idea.
<br>
<br>thank you all for "talking me into it" (w/o even knowing it i'm sure LOL)! i believe at my next clinic visit in February, i will talk to the doctor, too, and maybe try to set something up soon!</font>
<br>
<br>thank you all for "talking me into it" (w/o even knowing it i'm sure LOL)! i believe at my next clinic visit in February, i will talk to the doctor, too, and maybe try to set something up soon!</font>
lilmac1177
New member
<font face="georgia" color="#0066ff">i am also entering the same boat many of you have stated you're in or have been in ... PICCs are getting harder to place (last one in November they used a "third choice vein") and they're starting to have issue w/ clotting very easily! i have been kicking around the idea of finally getting passed the fear, the denial and all the reasons i thought i should put it off...even talked to the RN w/ my CF team at my last clinic visit and she seemed to agree that if i'm beginning to have issues w/ PICC then a port would be a good idea.
<br>
<br>thank you all for "talking me into it" (w/o even knowing it i'm sure LOL)! i believe at my next clinic visit in February, i will talk to the doctor, too, and maybe try to set something up soon!</font>
<br>
<br>thank you all for "talking me into it" (w/o even knowing it i'm sure LOL)! i believe at my next clinic visit in February, i will talk to the doctor, too, and maybe try to set something up soon!</font>