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living with nephrostomy tubes

NorcalJ's picture
NorcalJ
Posts: 192
Joined: Feb 2008

Hi!

New to this board, but unfortunately, long time "lurker" and occassional contributor to the breast cancer board, starting 6 years ago.

Being treated for BC mets to the adrenal since last April.  Last scan showed hydronephrosis in kidney on other side.  Ended up this week getting a nephrostomy tube.  Not that hard to handle , but I was hoping to get some tips on the everyday stuff.  I don't wear dresses or skirts unless I'm pushed to the wall, and since I'm now retired---no walls!

So how do you all handle the yucky plastic sticking to your leg and bobbing around in your pants leg thing?  Yes, I have it pinned to my blouse/shirt, but that means I have to tuck in the top which I usually don't do.  I'm not much on sewing, but could make a pouch, but how do you hold the pouch in place?  Leg bands??  And will I always have to wear stretch waist pants?

I would love to hear from anyone whose dealt with all the daily "froo-froo" (always like to use the technical terms, when possibleLaughing)

Thanks,

J

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi J, I am sorry to hear that you have had so much to deal with. I have not seen anyone on the site  recently that has a nephrostomy tube. So you may not have much imput relating to accommodating the bag. I did come across this site though http://www.URineStyles.com/, which may be of use. This is a family business, they styled these bags to help a family member who is in the same position as you.  It can be worn inside or outside your clothing.If it works for you it will save you making something!

Do you have to wear this permanently or are they going to be able to remove the blockage? Hope you find something that helps, all the best:)

Djinnie x

NorcalJ's picture
NorcalJ
Posts: 192
Joined: Feb 2008

Hi Djinnie,

Thanks so much for the site info.  I will check them out.

As for how long I will have this thing is anyones guess at this point. My next step is a biopsy to see what the blockage is all about---not looking forward to that one, But I've had 4 of those in the last 6 years for the breast cancer (2 recently for mets to my adrenal), so I know how "fun" any biopsy can be! 

Thanks again---the fact that you haven't seen many posts about nephrostomy tubes, helps, and explains why I couldn't find much in my short hunt.

Jan 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Jan, 

I hope all goes well with the biopsy and the tube becomes redundant. I had a kidney biopsy recently, not the most comfortable experience, so I sympathize. I hope you find the bag site useful, the design is quite innovative:)

 

Djinnie x

cjhawk38's picture
cjhawk38
Posts: 40
Joined: Dec 2013

Jan I had a kidney biopsy done about 3 weeks ago and it was nothing.  Dr wasn't sure he could do it because the colon was by it but he was able to get 2 samples.  The worst part of it was having to lay in the bed for 4 hours after.

Good luck

 

Cindy

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

I recently heard about an acquaintance who has had 2 types of breast cancer and spent part of last summer dealing with mets to the stomach area, which has left her with a pot belly.  She is wearing maternity pants with the elastic front panel along with the longer, floaty type tops.  She's still able to work part-time as a CPA.

Good luck.

Donna

NorcalJ's picture
NorcalJ
Posts: 192
Joined: Feb 2008

Thanks all.  It helps to hear from people who've gone through it all.

Unfortuantely, my biopsy will be to my ureter where the blockage is and possibly my bladder as they saw a thickening there--whoopee!

I've had a number of biopsies, and I can absolutely agree that there is no "fun biopsy".  Have had some with soreness and pain during, and after.

Donna, I'm not into "fashionable" at this stage, only comfortable, and preferably hidden.  I have had bilat. mastectomies and eventually, had reconstruction, so I know about loose clothing. I had a prosthesis for about a year until my chemo and rads were done, and I have to say, I LOVE having the new (undroopable) girls.

One of the sites I saw with a homemade bag holder was actually over the shoulder.  I think it was made more for someone with a larger bedside sized bag (and probably a male).  Mine is a small leg bag, and I already carry an over the shoulder purse, so I'm in danger of running out of shoulders!Laughing  

Thanks to everyone for all the help,

Jan

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