nephrostomy tube

rebeccasuec
rebeccasuec Member Posts: 4
edited March 2014 in Emotional Support #1
Hi, I can't seem to find anyone living with a nephrostomy tube. I have questions about this. I have been getting it changed every 3 months but now they allow me every 4 month changes. Each time I get it changed I would end up in the hospital very sick. Last time they did IV antibiotics before and the day after and that worked, however I actidently pulled on the tube and ended up on 3 antibiotics again at present. They could not get a stent in, tried about 3 times. No one answers when I ask if anyone has lived with this for years. It has almost been a year for me now. I have leiomyosarcoma, now in surgical remission. Becky in Michigan.

Comments

  • GregStahl
    GregStahl Member Posts: 188
    #2
    I know what it is
    but I have not read anything from anyone that has this. Sorry, wish I could help. Try the Kidney cancer blog here, you might find someone there.
    Greg
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #3
    GregStahl said:

    I know what it is
    but I have not read anything from anyone that has this. Sorry, wish I could help. Try the Kidney cancer blog here, you might find someone there.
    Greg

    Sorry
    Not me either. I've never heard of one. I can't help but wish you very good luck!
  • callisto
    callisto Member Posts: 1
    #4
    nephrostomy tubes
    I have bilateral tubes which I have had since August 2009. I have them changed every three months and find that that works fine. Whe n I first had them, I had a lot of trouble with leaks, but have not had that problem since first change. The dressings are changed by my wife every week or sooner if any minor skin problems. I have had two very serious problems with infection when changes were done every six months, but not since changes every three months. This may or may not have been related to the tubes. My cancer is rectal which I have had since 2001. I've had two major surgeries, chemo (which I am still on), and radiation. Good luck with your tubes and let me know if I can be of any help.
    Fred in Wisconsin
  • NorcalJ
    NorcalJ Member Posts: 187
    #5
    Nephrostomy tubes

    I see this is an old post, but I'm new to the "tube" and was also looking for info from someone living with it.  I've got a history of Breast Cancer 6 years ago, and am currnetly being treated for mets to the adrenal.  The hydronephrosis kind of popped up out of the blue--aren't I lucky? Possible lesion in ureter.  I don't think they consider a stent if the lesion can return.  From what I gather, it's usually only used for kidney stones.

    Handling it all doesn't seem to be a huge problem, but it's looking like some people have talked about problems only when the tube is changed (I'm still 2 1/2 months away from my first change).

    Currently just securing it to shirt or blouse during the day and tucking it in my pants or skirt---any other suggestions, without it hanging out for the world to see?

    I hope you're doing well, and I've heard many people have it for years---not convenient, but beats a none functioning kidney!

    Thanks,

    Jan 

  • NorcalJ
    NorcalJ Member Posts: 187
    #6
    callisto said:

    nephrostomy tubes
    I have bilateral tubes which I have had since August 2009. I have them changed every three months and find that that works fine. Whe n I first had them, I had a lot of trouble with leaks, but have not had that problem since first change. The dressings are changed by my wife every week or sooner if any minor skin problems. I have had two very serious problems with infection when changes were done every six months, but not since changes every three months. This may or may not have been related to the tubes. My cancer is rectal which I have had since 2001. I've had two major surgeries, chemo (which I am still on), and radiation. Good luck with your tubes and let me know if I can be of any help.
    Fred in Wisconsin

    Nephrostomy tubes

    Hi Fred,

    Do you still have the tubes?  I looked on the kidney cancer site without much luck, so even tho this is an older post, I'm hoping for some general info on daily living with them.

    Just got them a couple of weeks ago, and hoped for some general insites.  I had breast Cancer about 6 years ago, and am again on chemo for mets to the adrenal.  Supposedly BC doesn't go to the kidneys or bladder, but that's what they said about the adrenal gland!  I'm hoping they'll do a biopsy soon because the waiting is the hardest part, as I'm sure you know.

    Thanks for any info.

    Jan  

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