port problems

lisa42
lisa42 Member Posts: 3,625 Member
edited March 2014 in Colorectal Cancer #1
How many of you have had problems with your port and have had to have them replaced? I've had mine in for three years now and the past two times my port has been accessed or flushed (two times ago I had chemo and the last time, just this past Tuesday, was a blood draw and port flush). Anyhow, these past two times when they go to flush the saline or heparin, I get a horrible shocking kind of pain downward from the port a couple of inches toward my breast. My port is on the left side, mid chest. They are still able to draw blood out of the port just fine- so it's still working and there was no pain or problem with chemo seeming to leak or anything, but the nurses are concerned it just tore or the tubing might have a small leak or something now. Yesterday a.m., the day after the port draw, I woke up with a bruise from the port and about two inches down underneath it, about an inch wide. It's really sore & from the looks of the bruise (which I've never gotten before), it looks like blood leaked out and drained down under my skin.

The nurses at the oncology office are concerned and put in a referral for me to get a radio test of some sort. I guess I'll go into the radiology dept at the hospital and they hook up the port, insert some kind of dye to track it and see it it's working, leaking, etc. They may determine that I need to have my port changed (It sounds like I'm a car, due for my oil to be changed, lol). I was told yesterday they'll try to get this approved thru insurance as soon as possible- I don't know what that means, though, timewise.
I'm due to have chemo this coming Wed & all this will have to be done before I can have chemo again. With Monday being Labor Day, don't know how quickly this all will happen.
Bummer, just because it's a pain in the butt (a pain in the chest, actually, lol).

Just wondering if this has happened to anyone else.

Lisa

Comments

  • HollyID
    HollyID Member Posts: 946 Member
    #2
    Hi Lisa...
    I've not had any problems with my port and don't even know it's there.

    It's very plausible that it could tear and leak. I'm not sure what kind of material that makes up the sheath that goes in the artery. It really does sound like yours tore if it's leaving bruises close to the port. It's good to check because you definitely don't want it breaking off and floating toward your heart.

    Prayers and good vibes going your way. If you have to have it replaced, I'm sure in your good hands. Love to you!

    Holly
  • TxKayaker
    TxKayaker Member Posts: 176
    #3
    I had to have mine removed 3
    I had to have mine removed 3 months after I finished chemo because the tubing pulled back and looped back on itself. The nurses could not flush it made a big knot in my chest because of the blockage.
    Good luck with your replacement.
    Mike
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
    Lisa
    I hope you get this figured out soon. I haven't had any problems with mine, so I am not a help here.
  • grammadebbie
    grammadebbie Member Posts: 464
    #5
    Sorry
    Hi Friend,

    I'm sorry you are having pain and problems with your port. As if you don't have bigger battles to fight..... Sometimes it the little things that wear on us....just one more thing to deal with. I hope everything turns out well. I will be praying for you.

    Hugs and Prayers,

    Debbie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    Timing
    Hi Lisa

    Sounds like you've got the problem diagnosed. If you need a new one, the timing sounds right...you don't want infusion with leaks, but you already know that.

    Just got my 3rd port put in last week.

    Hope your vacation went splendidly - with all of you sharing your trips, I've got to get mine, although next year. We both turn 50 and it's our 20-year wedding anniversary. So, if I make it that far, I want to do something FUN, like all of my friends:)

    Love you - Craig
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    Sundanceh said:

    Timing
    Hi Lisa

    Sounds like you've got the problem diagnosed. If you need a new one, the timing sounds right...you don't want infusion with leaks, but you already know that.

    Just got my 3rd port put in last week.

    Hope your vacation went splendidly - with all of you sharing your trips, I've got to get mine, although next year. We both turn 50 and it's our 20-year wedding anniversary. So, if I make it that far, I want to do something FUN, like all of my friends:)

    Love you - Craig

    Craig
    Hi Craig!

    It's good to hear from you! You have had so, so much to deal with lately- oh my goodness! I think of you often and pray. Looking forward to the 50th bday and the 20th anniversary is something to keeping holding on for- you will make it!

    Hugs to you,
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
    just got a call
    I just got a call from the hospital where my port was first put in. I have an appointment for 8 a.m. Tuesday (day after Labor Day). They said they're just going to assume that I'll need a new port- they'll run the test first to check it, then likely replace it.
    I'm glad they're getting me in fairly soon, but Tuesday is my 10 yr old's first day of school & I always like to take her and walk in with her. Maybe it won't be as big of a deal this year to her since she's in 5th grade. I'll have to ask her best friend's mom if she can take her and pick her up after school too that day.

    I know some of you have had your ports replaced already, so this shouldn't be a big deal, I hope. When I first had my port put in 3 yrs ago, I had a terrible time. It was very painful and it felt like they were slamming me with a sledge hammer and my whole chest, shoulder, and neck were sore for weeks following. I hope and pray that doesn't happen again this time! I already let them know on the phone how hesitant I was about this due to my experience & I was just informed to tell the nurses that morning that I need "extra" pain control.

    Well, I'll be in touch after Tuesday and let you know how the experience ends up.

    Hugs,

    Lisa
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    #9
    FYI
    when I had my port put in, I found the pain to be horrible everytime I got up and moved. The solution for me was to wear a bra. I thought I would be better at healing without one, but the breast pulled on the stitches and horrible pain. Soon as I figured it out it was like night and day. Just a FYI from my experience. Good luck to you. Pat
  • abrub
    abrub Member Posts: 2,174 Member
    #10
    My problems started the instant the port was placed
    Mine was replaced the day after it was originally put in - a defect in the port caused it to twist, and leave me in great pain. A review of a CT scan done later that day showed that the port was messed up, so I was admitted, and had the procedure re-done the next morning. No further problems.

    I've heard of a fair number of people whose ports have had to be replaced at some point during their treatments. Unfortunately, this is not uncommon.

    I hope all goes well with your deportation and reportation!

    Alice
  • geotina
    geotina Member Posts: 2,111 Member
    #11
    Hi Lisa
    George had trouble with the first port, after a few chemos, noting in nothing out. Sent him to the hospital where docs looked at it, they will fuss with it a bit more than the nurses. There was a kink or something in the tube that they saw on x-ray so out it came outand a new one put within a day or two. Second one put in by the colorectal surgeon and he has had no problems since. Sometimes the blood draw doesn't work the first time so George just tells them take it from the arm. When one of the more experienced nurses is there she knows how and will jiggle the needle the right way and out comes the blood.

    If there is trouble, let them put a new one in. Better safe than sorry if the old one is giving you trouble.

    Take care - Tina
  • stratplayer
    stratplayer Member Posts: 42 Member
    #12
    geotina said:

    Hi Lisa
    George had trouble with the first port, after a few chemos, noting in nothing out. Sent him to the hospital where docs looked at it, they will fuss with it a bit more than the nurses. There was a kink or something in the tube that they saw on x-ray so out it came outand a new one put within a day or two. Second one put in by the colorectal surgeon and he has had no problems since. Sometimes the blood draw doesn't work the first time so George just tells them take it from the arm. When one of the more experienced nurses is there she knows how and will jiggle the needle the right way and out comes the blood.

    If there is trouble, let them put a new one in. Better safe than sorry if the old one is giving you trouble.

    Take care - Tina

    Genetic testing
    Lisa, I found out that I am alergic to Heprin and Lovenox through my Genetic testing. So when I have my port flushed, they use Saline instead of Heprin.
    Heprin causes my blood to clot which is not a good thing.

    You will do just fine with your new port.
    You are not alone here or anywhere you go.

    God Bless us all!!!

    Mickey
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #13
    Ports
    Hi Lisa,
    I have had my port in for well over 6 years and the only issue I've had with it was that sometimes I get no blood return. It always lets the chemo (or whatever) in. I did have a flow test at one point just to make sure it works OK and it turned out to be fine. I don't recall the test being a big deal, they just put a dye in and then scanned me or something. I've never had pain issues with it other than it being sore for a while after it was first put in.
    I hope they can straighten it out for you easily. I start up chemo again next week too. (oh goodie!)
  • Eve1
    Eve1 Member Posts: 9
    #14
    Port replacement
    Hi Lisa, I had my port replaced last week. For some reason it flipped over. They removed the one on the left side and put one in on the right! It's a little sore but not to bad. I hope everything goes great for you.
  • Crow71
    Crow71 Member Posts: 679 Member
    #15
    Hey Lisa - Sorry you are
    Hey Lisa - Sorry you are having port problems.
    If walking your daughter into school is important, don't let this problem get in the way. My 5th grade daughter started last week. At her school, 5th grade is the first year of middle school and it is totally uncool for middle schoolers to be walked in by their parents. I was lucky to get a hug in the kitchen before we we left. If walking her in had been an option, I'd have done it - even if it made me late to an appointment. I hate to be late and disrespectful to my doctors, but sometimes I say to myself, "I'm the one whose life has gone off the tracks. I'm going to take this moment and enjoy it. Anyone who has a problem with that can kiss my cancer filled a$$."

    I've also had port problems. My colo/rectal surgeon put my first port in when he did my colostomy in August '09. He put it on the left side. I later found out that the right side is better for some reason - don't remember why. Mine stopped drawing with a few treatments left to go. The nurses hated that it didn't draw, but the doctor didn't want to interrupt chemo. I did have a test done at radiology and they determined that the tube did not go in far enough. It stopped short of the aorta and pinched up against the vessel wall.

    The port problem stayed on the back burner until a few weeks ago when it was time to start chemo again. I was fine to have radiology put my new port in, but my oncologist insisted that I go to the surgeon who did the hipec. He must have let a first year resident yank the old one out. It hurt, but only for a few days. The new one my right side is working just fine. I had chemo the next day.

    Hope everything works out. - Roger
  • Paula G.
    Paula G. Member Posts: 596
    #16
    John hasn't had any problems
    John hasn't had any problems yet. He isn't doing Chemo now but they do the blood and flush it every month. The doc that put it in said they should be good for five years. Others have had problems I have read about. I hope you don't have to have it replaced. Paula
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #17
    Crow71 said:

    Hey Lisa - Sorry you are
    Hey Lisa - Sorry you are having port problems.
    If walking your daughter into school is important, don't let this problem get in the way. My 5th grade daughter started last week. At her school, 5th grade is the first year of middle school and it is totally uncool for middle schoolers to be walked in by their parents. I was lucky to get a hug in the kitchen before we we left. If walking her in had been an option, I'd have done it - even if it made me late to an appointment. I hate to be late and disrespectful to my doctors, but sometimes I say to myself, "I'm the one whose life has gone off the tracks. I'm going to take this moment and enjoy it. Anyone who has a problem with that can kiss my cancer filled a$$."

    I've also had port problems. My colo/rectal surgeon put my first port in when he did my colostomy in August '09. He put it on the left side. I later found out that the right side is better for some reason - don't remember why. Mine stopped drawing with a few treatments left to go. The nurses hated that it didn't draw, but the doctor didn't want to interrupt chemo. I did have a test done at radiology and they determined that the tube did not go in far enough. It stopped short of the aorta and pinched up against the vessel wall.

    The port problem stayed on the back burner until a few weeks ago when it was time to start chemo again. I was fine to have radiology put my new port in, but my oncologist insisted that I go to the surgeon who did the hipec. He must have let a first year resident yank the old one out. It hurt, but only for a few days. The new one my right side is working just fine. I had chemo the next day.

    Hope everything works out. - Roger

    Roger- mine is left side
    Hi Roger,

    Interesting that you heard for some reason it's better to have the port on the right side. Mine is on the left & I've noticed it seems like most of the patients at my chemo center have theirs on the right side.
    I have no idea why it was put on the left vs. right side- I never even thought about it or asked about which side at the time I first had it done. Lousy to have another scar- I was hoping if I get a new one they'd just replace it in the same spot, but maybe that's not the best thing to do. Maybe this one can be put a little lower so it doesn't show above my shirts as much as this one does.
    I will definitely talk to them before they do anything to me!
  • Nana b
    Nana b Member Posts: 3,030 Member
    #18
    lisa42 said:

    Roger- mine is left side
    Hi Roger,

    Interesting that you heard for some reason it's better to have the port on the right side. Mine is on the left & I've noticed it seems like most of the patients at my chemo center have theirs on the right side.
    I have no idea why it was put on the left vs. right side- I never even thought about it or asked about which side at the time I first had it done. Lousy to have another scar- I was hoping if I get a new one they'd just replace it in the same spot, but maybe that's not the best thing to do. Maybe this one can be put a little lower so it doesn't show above my shirts as much as this one does.
    I will definitely talk to them before they do anything to me!

    Right side helps with the
    Right side helps with the seat belt when you are the driver. Lower is better, now that my port is out, you can see the scar with most v necks. Hope they can fix yours, scars in that area are not welcomed! At least not by me lol
  • taraHK
    taraHK Member Posts: 1,952 Member
    #19
    sorry
    Hi Lisa,

    So sorry you are having these problems with your port - just what you don't need!

    I've never had problems with a port. However, I have had three inserted (I was one of those people who wanted it whipped out as soon as I finished chemo. That was before I knew I was a recurring kind of gal!).

    I will say I've been very lucky with the insertion procedures -- mild discomfort for 24-48 hours afterwards, but nothing more. So, I wish you to have an uncomplicated and painless-as-possible procedure. I've had on right and left. They did want to avoid scar tissue for me, so you may need to be prepared for a new site....

    Sorry about the coincidence with your daughter's first day of school. What bad luck. Can you arrange a special something for the two of you instead? I know it ain't the same....

    Thinking of you and best wishes

    Tara

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