(The Basics – It’s back there somewhere? It’s a good time to have a friend)
Basics – The Stick:
This is where the urine collects, to then start its way down your ureters to the bladder. This is the hard part, they call it the “stick” (because they have to “stick” the needle through your back into the right spot in the kidney). The doctor then widens the hole to insert a firm tube (catheter) in place. This catheter has a “Locking Pigtail” (a curly Q) inside the collection area, to keep the tube from coming out. After several weeks to a month, the hole that was made going through your back into the kidney will “mature”. The basics of this is when the hole firms up and actually becomes a tunnel around the tube.
Then, when it’s time to replace the tube, the tunnel stays open making it easier to remove and replace with a new tube (catheter).
This is where the tube comes out of the skin, the “hole”. The doctor has probably secured the tube to your skin with a stitch (or two). It is done to help hold the tube securely, it makes sense. (but see The Stitch)
Basics – The Tube:
The tube is actually a drainage catheter(fancy name for a tube). It has a “Locking Pigtail” (the curly Q inside your kidney) at one end, and a Female Luer Lock (screw-tight connector) on the end coming out of your back.
As mentioned, most doctors use The Stitch to help secure the tube to your back.
We Have Learned, The injection they use to numb the area for the stitch hurts a lot!
We Have Learned, The stitch has, more than once, pulled out of the skin, (But, No cause for worry!)
We Have Learned, The “hole” will often ooze out “stuff” which crystallizes under the stitch and feels like it’s stabbing you.
We Have Learned: After a few tube changes, The doctor asked me if I wanted The Stitch, or not? I didn’t know it was an option! I was very concerned about not having “The Stitch” because I am very active.
But, I figured I’d try it. Going without The Stitch worked out fine. Perfect in fact! No problems at all! AND, without The Stitch, I don’t get stabbed and poked from the crystallized ooze that gets trapped there. I haven’t used The Stitch in over two years, with no problem.
The Dressing and Securement Device (or Tube Restraint or Catheter Fixation):
The Dressing is the protective covering over the Point of Insertion.
I prefer to use a dressing that has a window that goes over the Point of Insertion with a self-sticking perimeter. This allows for a visual inspection of the site while keeping foreign matter out. The Securement does just what it says, it secures the tube to the skin, to help keep the tube getting pulled on because it’s stuck down.
A good Adhesive Securement, works better (In My Experience) than a stitch, because the Adhesive Securement has “give”, flexibility, and still does its job, while a stitch will just pull out of your skin.
The Transition Piece – between Drainage Catheter and the collection bag tube
Without a Transition piece, the tube from the catheter would connect directly to the bag’s tube. There would be no way to shut-off the flow from the kidneys when you need to change bags, messy. So, a Stop Cock, (often called a 3-way valve), will work as a shut-off but is the bulkiest option. When you are trying to get comfortable sleeping on your back, bulky doesn’t work so well.
We Have Learned, a section of tube with a tube clamp is the most streamlined, allowing for shut-off without being too bulky. Both valves are designed to allow a connection to a needle-less syringe to be able to back-flush the catheter into the kidney to clear any debris that may develop around the holes in the Pigtail.
The Basic Components are a Luer lock, the tube, bag, and drain. The Luer Lock is the twist connector. There are both male and female connectors. All Nephrostomy bags that come with a tube will have a male Luer lock connector. The tube transfers the urine from the transition piece down into the bag. The Bag collects the urine prior to disposal, and the drain is a “shut-off” at the bottom of the bag, which allows the bag to be emptied.
Theory – What is important to know, is the bag works by gravity. The bag needs to be lower than your kidney for urine to drain into it. If you raise the bag above your kidney, urine can drain from the bag into your kidney. You don’t want that, it can increase the chance of infection, and doesn’t let the kidney drain (that’s bad). This is important to think about especially when lying down or sleeping.
How to wear the Bags – All bags we’ve seen come with some kind of straps. Usually two, (or one long one to cut in half) one toward the top of the bag, one towards the bottom, to secure the bags to some part of your body. Different lengths of straps, some Velcro®, some not, some hole and button. They come with instructions on how to attach them to your waist, or your thigh, or your leg, somewhere.
We Have Learned, The waist isn’t practical (with pants) unless you’re going to wear them outside of your pants and a Darth Vader cape over your clothes to cover them up, for modesty (I did that for a very short time, hooking the bags onto my belt loops).
Common sense taught, Since your thigh is wider at the top, if you strap around your thigh, by the time you walk a hundred steps, it has slipped down to your knee.
We Have Learned, What works best is to strap it on just below your knee, above your calf muscle, and it will stay put all day, and you only need to use the top strap of the bag. The pants leg easily slides over the bag, for modesty. By The Way, there is no easier way to drain your bag, than to put your foot up on the edge of the toilet or a urinal, pull up your pants leg and open the drain. Even outdoors, you can go to the grass at the edge of the parking lot, or mulch around a tree discretely, you look like you are just tying your shoe!
Adjustments – The bags usually have slots for the straps, at the top and at the bottom. Using the “below the knee” attachment method, you only need the top strap, and it’s more comfortable not having two straps. Feed the strap through the holes so the strap is on top of the bag, not under the bag. If it’s under, the bag will bunch up. Don’t tighten the straps too tight, or your leg will itch like crazy come the end of the day. I tighten my leg strap just enough, so when the bag is about half full, it’s just, “not quite”, starting to slip, then tighten it a little more. Once I feel it start slipping down, I know I need to drain it sooner rather than later. Start looser, then tighten a little at a time until you find your comfortable spot. If your leg is itching under the strap at the end of the day, you can probably go looser.
Re-sizing the tube – Depending on the style bag you have, you can usually pry the Luer Lock connector off of the end of the tube (I use one blade of a pair of scissors to pry with), cut the tube, and re-insert the Luer Lock back onto the tube. That’s the hard part, it takes a lot of hand strength because the Luer Lock is so small. In My Experience, I screw the Luer Lock onto an Adapter (Gives you more to hold on to) to be able to re-insert it into the tube. Running the tube under hot water will also soften it up, making it easier to re-insert.
Two Tips for Comfort
Larger Volume bags for overnight !!
Nobody tells you about this. So here’s what up. The “Industry” wants you to sleep in your leg bags, and/or attach a larger bedside bag to the drain at the bottom of your leg bags. So you are either getting up in the middle of the night to drain your bag (that’s still strapped to your leg), or try to sleep through the night with the bags strapped to your legs, and tubes connected to them going to a larger bag. How uncomfortable!
We Have Learned, At Night, switch to a different bag setup. I use a long 36″ tube extension (same size as the bag’s tube) that connects to the transition piece at the top. That tube goes down to connect to an Adapter, and I then connect a 2000ml urinary catheter bag to the adapter, by cutting off the cone at the top of the larger tubing that comes with the larger bags. The Large bag hangs next to the bed (lower than the bed), I have the tubes organized so there are no issues. This is a brief explanation, See the Videos Page to see how it actually works, there are a lot of little details.
This completely changes the sleeping dynamic, sleep well my Nephrostomy
brothers and sisters, sleep well.
Think about Clothing
When I first came home, I had to figure out my clothing, for going out in public. Being a man, I wear pants, and I apologize for not having insight on how a dress feels with Nephrostomy. For me, the tubes (and dressings) were just low enough, I couldn’t pull my underwear up where I usually like it. My friend angles my tubes a little more to the outside, giving me a little more height. I have since gotten used to that. But my pants, the waistband crosses right on top of my tubes, and after just a short time, the tubes dig in uncomfortably. And forget about wearing a belt! The answer for me, coveralls! They are nice and roomy through the body, no interference at all with the site or tubes. The legs, especially the calves, are also roomy enough to completely cover the leg bags without them being visible from the outside, but more importantly, they don’t bind on the bags at all.
My personal experience, when ordering coveralls from Dickies.com was amazing. I needed the coveralls as soon as I could get them, and I happened to order the wrong size. I contacted Dickies.com and asked them if they could send me the correct size “now”, while I was sending the wrong size back to them. I didn’t want to wait for mine to get to them before they sent me the new correct size. They said
“I’ll tell you what, how about if we send you the new correct size today? Don’t worry about sending the other pair back, just take them and donate them someplace, or to someone that can use them.”
How cool was that! It is because of their awesome concern for their customers, that I am acknowledging them here, and now. That makes them a company I will wholeheartedly recommend.