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Percutaneous Nephrostomy
Percutaneous Nephrostomy:
I had this procedure done this morning, feeling a little sore but nothing I can’t cope with. I was advised to take strong painkillers regularly for the first 48 hours, I also have anti biotics.I now have a tube in my kidney to ease the blockage and have a urine bag which will stay in place until I have the RC.
I do not yet know the extent of kidney damage caused; I will get to know this information soon.I was very anxious this morning about this procedure, however, it was not as bad as I thought. I just wanted to reassure anyone who may have this done in the future that it really is ok. You will have a mild sedative and painkillers to help you through the procedure………I can’t remember a thing!
I had this done at the University of Florida Shands Center, the staff were great and explained everything to me and once again the professionalism and care I received was of a standard of excellence.
I now have to adapt to life with a urine bag for a few months, it’s a bit scary making sure that you don’t catch the tubes and I am sure I will get used to the bits and pieces and care of the bag in time.
For the girls ;)
I was looking at the urine bag tonight and thought of how I could disguise it under my clothes. I think this is going to be difficult for me to adjust.
So what I have decided to do is buy some nice material and little glitzy decorations and make a pouch for the urine bag and make a tubular material long draping belt to hide the tube, hook the lot to a Velcro waistband and see what happens!!!
If it turns out ok I can make a few more to match my clothes. I am hoping this will just look I have a purse around my waist!!! This sounds ok in theory; I will let you know if I can mange to do this.
Doing this for me will keep me occupied and take my mind of things, anybody tried anything like this? -
9 Replies
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Maria – We’ve been reading your posts and just want to wish you well through the chemo and RC. Harry had his surgery first and then started chemo. I don’t really understand the difference for chemo before or after RC, but know there must be one! Chemo is no walk in the park… Harry will begin his final round next week and is truly looking forward to being done with it! He’s had his ups and downs but we take it a day at a time and think of the end results and our blessings through this journey. I have had you in my prayers and will continue to do so. Margot and Harry
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Thanks for your replies. I slept all day yesterday, must have been the pain meds and my new night life, so to speak!
Had fun and games with the drainage bag and tubes…………….its like bringing home a new baby!!! I have been up past 2 nights every few hours checking the tubes haven’t twisted and emptying the bag, it was easier last night and I am sure it will get easier in time.I can relate to all comments regarding the bag and problems it brings, I have had so many ‘near misses’ catching the tubes, it just sends you into panic mode and then you realize you are ok………. got to keep that sense of humor.
I have a velcro strap around my hips with the bag attached, that’s ok for around the house. Tomorrow I am going out for a short time, I have baggy pants I can disguise the bag until I make the covers.Duane, I did have the amnesia / pain relief for the procedure, no idea about the creatin, just knew the blockage needed dealt with urgently.
I am due to start chemo for 2 months and RC after. -
Go for the glitz,, sequins, rhinestones etc. My husband decorates his bag, its a big smile face this week, sometimes he smiles more depending on how much is in the bag…decorate the bag Maria, buy some material and make covers, great idea. I was thinking of opening my own business, designing bags for ileaut conduit people. As far as clothes go I am sure you can get creative there as well,,take care, prayers for you, Ginger
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The reason you can’t remember is , they probably gave you VERSAID–(spelling)–that has the effect of amneisia plus pain relief. You never said what your CREATAN–(sp) level is ,mine went from 6.2 down to 1.4 after my RC, the tumor covered the opening to my left kidney. I can’t rember what diversion you chose, I chose the outside bag and now the little slosh from the bag is just replaceing the urge to pee that I use to have.—-OH by the way Bag covers —–Just google bag covers –they have lacey ones for women and Camo for men some are hand made , might help you with your design. Duane
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Hi Marie
Glad the procedure wasnt as bad as you feared.Lets hope your disguises work do you have a date yet for your RC.Sometimes you just think what else can they throw at me.
Take care and good health
Lisa x -
Hello Maria,
I am so glad you have found a great medical center and team for your chemo and RC…
After my RC I was sent home for a week with a catheter and bag but was given velcro straps for my thigh. The straps had two small buttons on them which clipped onto the bag. The bag is then hidden under any garment. I also relate to the sloushing of the urine that Melodie mentioned :) and constantly checking to see that the valve was closed.
Making little pouches for your bag in various colours is also a fabulous idea which will indeed keep you busy and take your mind off things a little…
You have a great positive attitude Maria and I know this will see you through this journey.
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
An image comes to mind of an elastic strap to hug the bag to your thigh. I don’t remember where I saw a picture of such a device. I wonder if a medical supply place would have something that would work to help you keep it disguised under your clothes. You might try googling for a way to carry and disguise the bag.
I used google to look for something to put over my husbands PICC line in his arm so he could take a shower easier. I had used the plastic bag the newspapers comes in when it rains and taped it to his arm with waterproof tape. I found several products that said they were waterproof and would work even while swimming. The best one was a Walgreens Home Health of all places.
There are more people than we know with blocked kidneys and nephrostomy tubes with bags so I’m sure there is a remedy somewhere. Julie
Volunteer Coordinator
ABLSC
Maria,
I’m reminded of when I was in your situation. One night as I was walking through the kitchen after the “the procedure” my tube caught on one of the knobs on a cabinet. The experience gave new meaning to the term “breaking one to led”. Got my attention right away!! :D :D
As my daughter says, “it is what it is”. The humor of it all keeps us trucken. Our thoughts are with you.
Gordon
age 70
Dx 10/03
neobladder 9/4/04
Maria,
You’re so cute and creative! Good idea…somewhat empowers you and that is excellent when facing cancer. :) Good for you!
I’m wondering why they didn’t set you up wth some kind of leg bag that fits under your pants and fastens around the ankle, like I was given when I had my TURB. And then at night I switched over to a bigger bag which would hold more but did restrict me as to how I could sleep. I have to say, I dispised that bag on my ankle. I take in lots of liquids and I just didn’t like that urine constantly sloushing around my ankle when I walked and I was always checking it to ensure the little valve was shut. I very little about kidney problems and how those are managed. Sorry you have that concern to handle prior to your RC, but you sound much more “up beat” now that you have some good medical support. I’ll be anxious to hear how you new attire works out. Take care,
Hugs, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightSign In to reply.
