Posting For A Forum Member, Port Leaking From Embarrasing Spot

    • Anonymous
      January 20, 2009 at 1:30 pm

      Hi family,
      I’m posting this for a forum member who’s too embarrassed to ask for advice as to what is wrong. She told me she’s leaking from the nipple immediately after she receives an infusion. She talked to her primary care doctor, her GYN and her neurologist, none of them has heard of this happening before. Her infusion nurse hasn’t heard of this either. She has an appointment to have the port line checked and a new one put in if necessary. The surgery nurse thought there might be a kink in the line.

    • January 20, 2009 at 2:50 pm

      Is she sure it is ivig? If so, obviously the port may be defective, or the needle is not in the port. Is is strange that it is coming out the nipple, as the tubing goes from the port to the vein in the neck. (At least that is how Kevies is) I assume the gynecologist cleared the leakage as not being discharge? Good luck to your friend.
      Dawn Kevies mom

    • Anonymous
      January 20, 2009 at 5:47 pm

      Hi Liz,
      I never had any problems like that with my port. I would be concerned that the line has come out of the vein/artery (?).. Or possibly more of an actual medical issue. Tell her please do not let it be brushed off because obviously this is not something that should be happening.

      Take care

    • Anonymous
      January 21, 2009 at 1:28 am

      Does this happen to both sides and does it happen only with immunoglobulin or also with other infusions including saline? Leakage of fluid from the glands of the breast is called galactorrhea. There are two reasons that it might happen with immunoglobulin infusions and be more likely on both sides. First is that some other medicine is being given with the immunoglobulin (?steroids, calming medicine, medicine to help settle the stomach)–there are a few that can cause galactorrhea and it might happen only after she gets that medicine and not other times. Second is that there is a huge protein load with immunoglobulin and this might displace some medicine/hormones that are protein bound. I cannot immediately think of any, but the point is to look at other things as well as the “primary” medicine being infused.

      Leakage from the breast glands, if this is what this is, is increased if one has a high level of prolactin–the hormone used to let milk “come down”. There are reports of autoimmune problems altering the prolactin pathway including antiprolactin antibodies in lupus. If there is leakage at other times or from both nipples, the person probably should have the prolactin level tested. FYI, this can happen in men or women, but is more likely in women because women’s bodies are already relatively prepped for the potential to make breast fluid. We are just more advanced! Ha.

      The breasts are pretty self contained on the surface of people and the port catheter should be intact and separate. People can get holes in the catheter and there is a tiny, tiny chance that a hole could cause leakage into a breast duct. This would have to be only in the breast on the side where the catheter is located. This could be detected with a line study using fluoroscopy or with infusing something that one could see (such as a colored fluid) or detect. Before removing and replacing a port, it is probably worth doing a “line study” where a tiny amount of dye that can be seen by an x-ray test is put into the catheter and the radiologist uses a low level of x-rays (fluorscopy) to see if there is leakage as the fluid/dye is given through the port.

    • January 21, 2009 at 10:54 am

      I thank God for giving us With Hope!!! What would we do without her!!!
      Dawn Kevies mom

    • Anonymous
      January 21, 2009 at 3:08 pm

      Hi family,
      I asked my friend to come forward and explain things herself, we’ll see if she does. She told me in another email that she’s leaking clear fluids. She didn’t say if it’s out of both breasts. She has 4 different IV nurses and they get the IV needle in chest port most of the time. It never leaks from the port site itself.

      She had a thorough mammogram recently and everything showed normal.

    • Anonymous
      January 21, 2009 at 3:17 pm

      Sometimes this can happen and it has nothing to do with IVIG or CIDP/GBS.

      I know someone that went thru this…clear leaking…but only when manipulated. It’s horomonal and perfectly normal. ( In her case )
      So, it could be that everything is fine and normal. I would mention it to a dr tho…obviously.

      good luck.


    • Anonymous
      January 21, 2009 at 5:53 pm

      I’m not embarrassed, it’s not like I asked for any of this. I’ve been leaking clear fluid for nearly 18 years now. I had many tests, blood tests, MRIs of my pituitary gland etc. and they have never found reason for it. It’s not a lot and it rarely happens now without that obligatory breast exam. Frankly I haven’t noticed whether it’s more or less with the IVIg because I really try NOT to squeeze any fluid out. The more you mess with it the more your body thinks you need/want the milk and so it continues, even men can breast feed as I read in the news recently, when presented with the need and the stimulation. When I was seeing doctors 18 years ago my breasts were getting so much attention they were leaking all the time. Now… well… it happens now and then but it’s not a big deal. I saw a video of a guy who can shoot blood out of his tear duct a foot out from his face – now that goes beyond embarrasing medical oddities to the all out nasty. :p

    • Anonymous
      January 21, 2009 at 7:35 pm

      Alright, so I’m going to speak up too.

      My breasts leak as well. It started when I was pregnant (obviously it would happen then) and never really stopped. It only happens right before I get my period – my dr said it’s because I have a surge of hormones.

      It sounds like WithHope had some good advice. I would think it would be from an increase in proteins or from a medication before thinking it was a problem with the port.

      Kelly (surprisingly not blushing)